*IMPORTANT* Call to Action

This entry is going to be a bit tricky, which is why I’ve been mulling it over in my mind since Thursday evening. I woke up early this morning to start writing, so I apologize in advance if it seems scattered, or if things don’t seem to make sense. I’m trying my best to explain what’s going on in laymen’s terms while still not totally understanding it all myself.

Here’s what’s going on:

We found out last Thursday that Claire will no longer be eligible for her A&D waiver (age and disability) which is how she qualifies for Medicaid. Her eligibility will run out end of February because you have to reapply/get re-evaluated every year. While it’s a pain to reapply, I do think it’s good to reassess and check in each year to help avoid anyone who may take advantage of these services. That’s not where my issue lies. My issue is in the guidelines that have been changed – read further to understand more.

In essence, the A&D waiver, “waives” the income factor for families applying for Medicaid and grants Medicaid based on the person’s medical needs instead. We’ve applied for Medicaid several times since having Claire, but get denied each time because our income is too high (you basically have to make next to nothing to qualify). So, the way we were able to get her on Medicaid last year was that we were finally approved via the A&D waiver because the guidelines change from birth to three, and since she was turning three – her level of care and medical needs was significant enough to qualify her. Hooray! Here’s what has been so great for us, as parents, to have her on the waiver:

  1. All of her therapies are covered. This includes her weekly PT, OT, and ST which would normally cost us hundreds of dollars each month (even with primary insurance).

  2. Because of these therapies, Claire gets the support she needs to help her meet her full potential. She’s learned how to chew (yes, something we normally don’t think about but kids with low oral muscle tone have to work to learn), how to drink from a straw, how to crawl, how to walk, and her device which has opened doors to communicating and given her the confidence to start finding her own voice.

  3. We get diapers every month because they are considered a prescription. Claire is three and a half and isn’t potty trained, and she’s no where close. That’s not typical. She can’t get communicate when she needs to go, let alone have the strength to get herself there, go, and wipe independently. That’s just not a reality for us right now. So, having diapers funded for us has been a tremendous help.

  4. The waiver helps cover some costs for specialists. Claire sees: neurology, genetics, endocrinology, orthopedics, ophthalmology yearly – if not more. These are not negotiable appointments. We don’t go for fun, trust me. We go to keep tabs on her, update or plan, and make sure she’s getting the best care possible.

  5. In May she had a repeat brain MRI and extensive genetic testing done, which lead to some incredible findings for us. We would not have been able to do this on our own – the genetic testing itself is thousands of dollars – not including the MRI, anesthesia, doctors costs, room costs, etc.

On Thursday, at our re-evaluation, we went through the new checklist – the new guidelines. And unfortunately found out Claire will no longer be eligible for this waiver. She missed qualifying by ONE POINT. As you can imagine, having this bomb dropped on us was quite the shock. At first, I felt like I handled the news pretty well. The criteria for qualifying are pretty drastic, so a part of me was like “Well, I mean, I guess we should be thankful her level of care isn’t that intense.”

And then, as it started to settle in, I became angry. I still am. The new guidelines are so strict, it’s nearly impossible to qualify for. While Claire may not have the highest level of need compared to other children, she still has significant needs and should be able to receive the help she needs without fighting tooth and nail to get it.

I’m frustrated and disappointed, at the misinformation and ignorance of the people (“nurses” and “doctors”) who made these changes.  Clearly, they are so far removed from the daily impact and the incredible support that comes from this waiver. Are they up late at night, sick to their stomachs, wondering what child, what family, isn’t going to be able to afford the basic medical needs for their disabled child? Are they worried about the long term affects this will have for that child and their family? Probably not. Their perfectly polished guidelines are eliminating families and children in need because they do not meet a certain number of “checks” ex: 6 out of 7 in one category (medical) or 3 out of 5 in another (activities of daily living). Doesn’t matter which categories are checked, more severe or less severe, if you don’t meet that magic number…you’re out!

If you look at our state flag, it says “Equality before the law.” How interesting. Are we really upholding that?

A family shouldn’t have to choose between quitting a job or getting a divorce so that they could reapply and qualify due to income to receive Medicaid. They shouldn’t have to move to the next state over because their waivers are much better than ours. That’s insane.

I’m not writing this post to gain your sympathy. Being sorry, having a pity party for ourselves isn’t going to change anything right now. I’m writing this to spread awareness (because if we, a family who receives this service, were blindsided by the news, I would imagine you don’t know these changes were made either). I’m writing so that together we can come up with a plan of action and do something about it. We can’t sit idle thinking someone else will stand up, someone else will say something … because they won’t. It has to be you. It has to be me.

So, gather around me, troops. We’re going into battle!

  1.  Go here  and go to the last paragraph, click the blue link next to “Comments may be submitted to” and comment. You can comment until January 9th. “But, I don’t know what to say?”. Say something like this:
    It’s been brought to my attention that major qualification changes have been made to the A&D waiver for Medicaid. I do not support these changes and the negative impacts these implications will have on hundreds of families across our state. We need to defend and stand up for those in our community who are vulnerable and at risk. Providing them the services they need at a young age will help them gain the skills they need to reach their full potential. I urge you to revoke the most recent changes and reinstate the old guidelines.
    *It’s important you stress A&D waiver. These comments are technically for the DD waiver (which is different), but any comments made must be addressed, so use this to make your voice heard for the A&D waiver.

  2. Join me this Wednesday (January 9th) @1:30pm in Lincoln for a public forum. This is open to EVERYONE. This is a meeting about Medicaid and long term care, but they must address every public comment made. Join us. The more people who can be there for support, the better. Even if you don’t know what to say or how to say it, show up and be present. There is power in numbers.Claire and I will be there. I’m hoping to share our testimony, give them a story, a face, a family impacted by the waiver, and pray that we open some minds, and soften some hearts and a change can be made.Address:  Nebraska State Office Building
    Centennial Mall South Lower Level Room A
    Lincoln, NE 68509

 

We are one of the first families affect (since it’s so early on in the year) and we need to take action now in hopes of preventing it from happening to other families. Please pray for me to have the courage, wisdom, knowledge and strength I need to plead our case and the case of so many children who will fall through the cracks and lose the support they and their families need. You guys, this is a big deal. A very big deal. We can not stand by and let some of the most vulnerable in our society get trampled over, taken advantage of, and silenced because of misguided and misinformed law makers. Please, I beg you, join me in my efforts. We can’t do this alone.

Comment, email, or message me with any questions. I may not have the answers yet, but I will work to find them.

Bridget AschoffComment
Snugs 'n Boops

Well, I finally feel the nudge to continue on with Claire’s story. When I first started documenting her journey back in February 2018, I was jazzed (and very nervous). I was excited. I was ready. And I was able to bust out entries like a boss.

And then life got busy.

We had doctors appointments, and a REALLY big one for Claire in May where she had a repeat brain MRI, bone survey, and genetic testing. All summer I was a nervous wreck waiting for those results. We finally got them in September (after they were a month over due!). And then school started up, the kids started a new daycare, and life just seemed to pick up pace.

While it’s cathartic for me to write out Claire’s story, and I feel like it’s important to document all of these details before they get forgotten in the Abis that is my “mom brain,” (as my 5 year old likes to tell his teacher, “My mom…she just…forgets a lot of things”) it’s also very draining. Recapping and reliving these incredibly stressful moments is emotionally depleting – which is why I needed to take a break for a bit. Thank you for being patient with me!

But… I’m back!  And I have lots to share. Buckle up, y’all!

If you’ve been following Claire’s journey, we’re going to pick up, by backing up… because there’s a VERY important part of her story that fits in between Ask and You Shall Receive and Home (Not so Sweet) Home and it highlights some very important people who made their debut in Right Place at the Right Time.

To recap – before Claire was born I had reconnected with my bestie from the 90’s in a random (or Holy Spirit driven) encounter downtown. I had promised to keep in touch, and she came up to the hospital to visit shortly after Claire was born. Prior to Claire being born, my husband and I had toured a handful of daycare centers in town. We knew it was possible our baby would need round-the-clock nursing care, but also might not need that at all. When we found out, SURPRISE, she was coming four weeks early, instead of panicking about daycare, I just kind of thought…screw it. There was no sense in spending money on multiple “holds” at different daycares (and inevitably flushing more money down the drain) when we would know the baby’s needs in a few weeks.

And that’s where our story picks up (see..aren’t you glad you stuck around for that long introduction?). It’s about to get good.

So my friend, Sam (who later became Sammy per our oldest), came up to the hospital to visit our teeny tiny 4 pound bundle of love, who could pack a mean stinky diaper. You could literally smell her outside of her baby incubator…now that’s talent.

I was tired, sleep deprived, and overwhelmed. I don’t really remember all of the details about our visit, but what I do remember was talking about daycare…or lack there of. We now knew Claire wouldn’t need a full time nursing staff, but she would certainly need a little TLC and someone who could handle helping care for a child with special needs.

While finding daycare was important, it was kind of on the back burner until Claire got out of the NICU and life settled down a bit at home. I had prayed about it, and honestly, put it in God’s hands. Which sounds sweet and faith filled, but let me translate the real conversation for you here. It went a little something like this,

“God, you figure it out. I’m too tired. Haven’t I done enough?”

It wasn’t pretty, it certainly wasn’t polite, but it was the best I could do.

 “Cast all your anxieties on him, for he cares about you.” 1 Peter 5:7

Sam and I stayed in touch throughout Claire’s stay in the NICU through texting and visits. It was a joy to rekindle a childhood friendship and have someone I could turn to for advice as I began navigating the waters of special education. God knew what he was doing, and he wasn’t done yet.

Fast forward to finding out we were going to be discharged from the NICU (alleluia!) and I get a text:

Sam: Have you found daycare for Claire yet?
Me: No…haha! (but actually freaking out because, seriously, what was I going to do?!)
Sam: Well…I’ve been thinking…and I just feel like…I should watch her.
Me: *in my head* SHUT THE FRONT DOOR! Are you FOR REAL? YES YES YES!
Me: *in real life trying to be cool* Ok! Yeah, let’s set up a time to all meet together.

And right then and there I called my husband.

“OH MY GOSH! I think we’ve found daycare for Claire!”
“Ok.”
“What do you mean, ‘ok,’ aren’t you the least bit excited and relieved?”
“Um…yeah.”

Men. Ugh.

We decided to do a dinner at her house and it couldn’t have gone any better. The house was busy, as Sammy and Jane took care of a boy with autism, had a hedgehog named Ellen, a rambunctious puppy, and a fish tank filled with frogs. It was busy and it was full of love. In essence, it was perfect.

After Claire was dismissed from the NICU, Sam and Jane came over to our house to talk about a start date, pay, etc. I was so nervous they would change their minds that my hands were dripping with sweat that night and I’m sure my heart rate was sky high. When they smiled and agreed, I couldn’t have been more ecstatic!

Thank you, God, for another answered prayer.

Their house was literally 3 minutes from my work, I could drop Claire off and pick her up while my husband took our oldest to and from his daycare. Claire would have all of the love and attention she would need, and I could finally breathe a sigh of relief. Once again, things were falling into place in a way that I could have never dreamed. And that is how Snugs ‘n Boops Daycare, one of our greatest treasures when Claire was a baby, got started. When we leave things up to God, he works up plans that we could never even fathom.


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Bridget AschoffComment
God > Chocolate

Things with Claire have been so good lately, that I’ve hesitated to pick up the pieces I’ve left off from the beginning of her story. So…sorry if you’ve been waiting on those; I’m just not ready yet.

Part of it is because so many good things are happening to her and for her right now, that I’ve been consumed by them and my emotional energy has been spent there — and well, raising the other two little humans, and the crazy dog.

The other part is that when things get hard with her, they are hard on me and diving back into it is almost like reliving it all over again. Which can be therapeutic when the timing is right. For me, right now, I just don’t have the emotional capacity to dive back into the early part of her story.

I’ve been wondering for a while now, what do I write next? There’s been so much going on, so many good things for Claire, I could really write about three or four entries. I’m sure I will at some point; I just hadn’t felt the nudge, or the “shove of the dove” (Holy Spirit) as my mom calls it….until tonight.

We have an IEP coming up for Claire soon and it required filling out a survey which will help us assess where she’s at and where she’s going. I’d be lying if I told you I enjoyed filling out that survey. It was long ( 11 sections ) and quite honestly, it was depressing. It’s easy for me to get wrapped up in our own bubble and only compare Claire to Claire. But in these assessments, she’s getting compared to typically developing peers. There are so many things typically developing kids can do at her age that she’s not doing – and it’s a hard dose of reality that I didn’t realize I wasn’t ready for. I try to focus on how far she’s come and the things she can do, but when you’re bombarded by that information and constantly clicking “never,” question after question…for 11 sections…it got me a little down.

No, she can’t walk up and down stairs independently.
No, she doesn’t use a fork and spoon to feed herself.
No, she can’t kick a ball.

And on… and on… and on…

I had come back to the survey four different times because my mama-heart just couldn’t handle it all at once. I finally finished it tonight – praise God – but I’m feeling quite depressed over the whole thing.

So my choices are sit here and wallow in self-pity while eating/stealing more of my children’s Halloween candy (which, btw is one of my favorite parts of having small children who can’t count to know I’m slowly chipping away at their stash)  … or … I can practice a little self-control, say “no more” to those adorable bite size snickers bars and write out a gratitude list, which undoubtably will lift my spirits, remind me that I’m truly blessed, and get my thoughts in the correct order. In my last entry, I mentioned that the devil likes to use fear to cause uncertainty and bring anxiety into my life, especially when pertaining to Claire. Yeah, he’s really trying hard tonight, and damnit…I’m tired of it. So, Satan, go to Hell. I’ve got better things to do with my time. Because God has “not given us a spirit of cowardice, but rather of power and love and self control.” 2 Tim:6.

…and as I looked that up, right about above it in the Bible is a prayer of Thanksgiving. God, you’re funny.

“I am grateful to God, whom I worship with a clear conscience as my ancestors did, as I remember you constantly in my prayers, night and day.” 2 Tim:3.

In my discouragement, Lord, I offer you these prayers of Thanksgiving:

  1. For the gift of life in Claire and all the joy she brings to our family and those she meets

  2. Her resilience

  3. Her smile

  4. Her ornery giggle when a character in a movie gets hurt

  5. How she has taught me empathy, compassion, forgiveness, and trust

  6. Her profound growth this year in verbal language

  7. The gift of a speech device that allows her to communicate with us, and extra gratitude that she doesn’t know how to program bad words into it yet.

  8. Her gross motor strength in being able to walk close distances independently

  9. Her improved physical health over the past two years

  10. Her desire and willingness to improve, even when things are much harder for her than her peers

  11. How she’s equally as mischievous as she is sweet

  12. That she has appropriately used multiple times in the last week, with her very own voice, “I love you,”(I wuhhyew) to daddy and me .

Ah….That’s better. Thank you, Lord, for your peace, patience, for your love, and your infinite grace and mercy.


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Bridget Aschoff
Home (Not So) Sweet Home

When we were finally able to bring Claire home, I was a mix of so many emotions: happy, terrified, excited, exhausted, relieved, nervous…the list goes on. She was still such an itty bitty peanut and seemed so fragile. And then I would hear her cry and be reminded that while she might be little, she’s got a whole lotta fight in her.

One obstacle we faced when we got home was what to do with all of the frozen breastmilk that had been previously stored at the hospital. Claire never latched well enough to nurse (fast forward two years and we discovered at swallow therapy it was due to low oral muscle tone and a really thick connection from her upper lip to her gum line) so I exclusively pumped (read – I became married to my pump for an entire year, her name was Bessie) and we bottle fed her. My supply was much more than what she could eat, so we were blessed with an over abundance of milk for her. We fit what we could in our freezers and sent the rest over to my parents’ (thanks mom and dad!) for the time being.

The second full day home, I thought I was losing my mind a bit because it seemed as if Claire was refusing the milk we had thawed and warmed up for her. After several failed attempts, I called the lactation consultant and said,

“Ok, this may sound crazy … but I think Claire is refusing this milk!”

“Oh, no! That’s a real thing. The thawed milk can taste differently from the fresh milk, so sometimes babies will refuse it,” she assured me.

Are. You. Freaking. Kidding. ME?!

And so our tiny little princess received freshly expressed milk daily. Even just typing that out makes me feel like a dairy cow. Anyway, a whopping five pounds and she was already calling the shots. Luckily, I was able to provide that for her (you’re welcome, Claire) and we just decided we wouldn’t buy any freezer food for the next ten years.

Fast forward a few more weeks and Claire developed what many call “the witching hour”. It started at 6:00pm (exactly) and she would cry, she would scream, and she would be inconsolable until she finally tuckered herself out and fell asleep. Slowly, but surely, that “witching hour” began creeping up… 5:45, 5:40, 5:30, 5:00, until it became every day at 4:15 when I would pick her up from daycare. She would scream, and I mean SCREAM the entire way home.

Once we got home, she’d scream all night long pausing momentarily only to catch her breath and express that awful, loud, high pitched shriek. I’m not even sure if I can do justice to just how awful her scream was. It was a combination of the highest pitch imaginable mixed with an incredible amount of depth and force from her diaphragm that lasted an insane amount of time before she would produce another deep gasp, releasing hell once more. I’m not a betting  woman, but I’d bet you that even the neighbors were putting in ear plugs or pulling pillows over their heads.

I knew something wasn’t right but I wanted so badly for her to just “snap out of it” that I pushed that maternal instinct away until I could no longer stand it.

After about a month of denial, I took her to our pediatrician who agreed I should try a dairy free, soy free diet to see if it helped her improve.

Goodbye, cheese.
Goodbye, sour cream.
Goodbye, coffee creamer.
Goodbye, butter.
Goodbye,ICE CREAM!!! (insert wailing and grinding of teeth)
Goodbye, freezers full of frozen breastmilk. (insert tears…lots)
Goodbye, sanity.

Thank GOD I had a few friends who had already been through this MSPI (Milk Soy Protein Intolerance) diet before with their kids and who could give me sound advice on recipes, grocery shopping, and a whole new way of reading labels (‘cuz soy is in EVERYTHING).

It seemed as though life with Claire would never get easier. Once we overcame one hurdle, another would come springing up. And quite frankly, I was sick of it. I was frustrated. I was tired. I was at the end of my rope. And to top it all of, I had a baby screaming at me pretty much every moment she was awake.

Nothing I did could appease her.
Nothing I did could help her feel better at this point in time.

I loved Claire, but I did not like her. Not at all.

This was a really rough, really harsh, emotionally and mentally devastating reality for me. I tried to will myself into liking her. Maybe if I spent more time with her, maybe if I cuddled with her more, maybe if I read just one more book with her – I could bond with my baby and feel that connection I was desperately longing for.

Instead, it made it worse.

I hated admitting that every time she would start to scream, I wanted to punch a wall. That every time I knew a fit was coming, I wanted to (as Forrest Gump would say) run far – far, far away,  because I just couldn’t handle listening to her screech for one more second.

I vividly remember one evening collapsing into my husbands arms in the kitchen as tears of anger, resentment, and sorrow rolled … no, streamed … down my face.

“I don’t know what do for her any more. Nothing works.”

To top it all off, I also had a sweet little boy who, I felt, was being neglected of his mother’s attention and love because every ounce of extra energy I had was being poured into trying to figuring out what to do for Claire.

I can not say enough how blessed I am that I had a support system of family and friends who “got it”. They validated my feelings and offered to come babysit (bless their hearts!) so I could get things done, take a nap, or even go on a date with my husband (oh hey, who are you again?).

One close friend in particular was in the boat of “been there done that”. Three of her girls had MSPI and she was a source of strength, comfort, and validation. She brought meals, held and rocked Claire, and wasn’t shaken one bit by the shrills produced by my baby girl. I felt safe and a little less guilty leaving Claire with this friend because I knew nothing Claire did would rock this friend’s world.

“I’ve got it. She will be fine. She doesn’t scare me. Go!”

After a few weeks on the MSPI diet things got better. My system started to clear of those proteins and Claire was able to tolerate the *fresh* milk. There were a lot of ups and downs as I learned what I could and could not eat. There were several times I would think a certain food was okay, only to find out the soy protein was hidden in there somewhere (under one of this bajillion pseudo names), and I knew that for the next two days Claire’s tummy would be more irritable.

It took months before Claire’s tummy totally healed. I think I remember by Christmas time finally being able to semi-enjoy her presence. But, it was a long road of mending that relationship. Because we had such a rocky start, I felt like I was robbed of those early months of bonding with her. Any time she would cry, my senses would kick into over drive and my desire to flee would come in full force.

While I loved her with an unconditional love (I gave up ice cream for eight months after all. If that’s not love, I don’t know what is) it took me quite a while to like her which filled me with a lot of “mom guilt”.

Now that that season of life is behind us (Thank you, Jesus!) I see things a little more clearly than when I was in the muck and in deep survival mode of that first year. The joy I feel now when I get to pick her up from daycare and her entire face lights up with her ornery, dimpled grin and she flaps her arms up and down like a little bird because she can’t contain her excitement…I know that early longing for a close mother-daughter relationship eventually found its way into our lives.


Bridget AschoffComment
Ask and You Shall Receive

Disclaimer: This post includes a lot of dates. If you’ve been following the other entries, you’re aware I did not keep a journal at all during Claire’s stay in the NICU. Please do not think I’ve got some sort of laser mind and can keep details straight easily. It’s actually the polar opposite. I’ve forgotten my husband’s birthday…twice…I do most of my Christmas shopping on December 22nd because “Oh my gosh, Christmas Eve is in two nights!” I have no clue what I ate for breakfast yesterday. BUT…for some reason, when it comes to Claire and her medical history, my mind is a steel trap. I can rattle off dates, procedures, doctors, etc. like I’m on a game show with prize money to be won…(can someone make that happen, btw?! I could use some extra cash…;))
Life in the NICU had its share of ups and downs, but nothing could have prepared us for the lowest of the lows. July 4th, 2015 will be a day I’ll always remember because the feelings of hopelessness and emptiness crept back into our lives like thief in the night, taking our most prized possession, the health of our little girl.

We had some phenomenal doctors and nurses at the hospital, however there was one doctor who seemed to lack any kind of bedside manner when it came to talking about Claire. His tone always came off arrogant and rude, but after confiding in one of our nurses about it, she shed a little bit of light that helped me process his demeanor a little better.

“He just likes to be able to help and figure things out. Claire is such a mystery and he can’t crack her case. I don’t think that he’s meaning to come off that way; I think he’s just frustrated he can’t figure her out.”

Join the club, dude.

Having this bit of insight on this doctor helped, but it didn’t make the way in which he said things any easier to digest. At this point, we had been in the NICU for nearly a month, and Claire was still struggling in certain areas. She wasn’t at the point where she could feed on demand.  What few ounces she would gain, she would lose just as quickly. And as soon as she would graduate from her incubator bed to a regular hospital crib, she’d be moved right back because she couldn’t maintain a steady temperature.

He came in for rounds the morning of July 4th with a solemn look on his face.

“She’s not gaining any weight,” he began. “We have a really good track record of helping babies gain weight in our NICU, but she’s not. I don’t know what’s wrong with her.”

“Do you think she has something genetic? Do you think she has something degenerative? Do you think she’s going to live?” My husband and I asked as we fought back tears.

And that’s when the pit of worry, doubt, and uncertainty in my stomach became a boulder. What in the world is going on?! Would we ever get out of this hospital with our baby alive?

“I don’t know. We need to do a repeat brain MRI, blood work, and a bone survey. Other than that, we can try one more thing to see if it will help her gain weight, but I don’t know if it’s going to work,” he told us.

He came up with a plan to put Claire on MCT oil, which is essentially saturated fat that can help with weight management. This was our last ditch effort, our Hail Mary during the last play in the fourth quarter with no time left on the clock. Let’s toss it up and see what happens. Not exactly the kind of health plan you want to have for your child.

I don’t think I’ve ever seen my husband look so worn down and disheartened. Throughout this whole process, he had been the one to keep me upbeat when I was discouraged. He’s the one who stayed strong when I would crumble. When the doctor left our room, we both cried and seeing the tears well up in his eyes and roll down his cheeks crushed me.

Claire had so many areas that needed improvement before we could move forward, and the outlook seemed incredibly grim. We both worried that we would never bring our baby girl home. This was our lowest low.

One thing that has always been consistent about Claire’s journey is that I’m constantly reminded that I’m not in control. I can do my best to advocate for her, but at the end of the day, I’ve got to give it up to God. Three and half years in and it’s still a daily struggle.

While it sucks to be faced with so many situations where I have zero control, I will forever be grateful to Claire because she has strengthened my prayer life and brought me closer to God. So, when we got the very harsh news of “I don’t really know what’s wrong and I don’t know how to help and I have no answers for you,” we knew what the medical field could not answer, our Divine Healer could.

And so I prayed.

On July 5th, I began a novena to Our Lady of Perpetual help. A novena is a kind of prayer Catholics pray for nine consecutive days with a specific intention in mind. In this kind of prayer, it’s important to know that Catholics aren’t worshiping Mary. When we pray, we are asking her to pray for us, just like you would ask a friend on earth to pray for you in a time of need. My prayer for this novena was a LONG shot, but hey, who am I to put limits on God?! I prayed that if it was God’s will, by the end of my novena (July 14th), our baby girl would be strong enough to come home.

Claire started on the MCT oil on July 4th. Slowly, yet surely, Claire started making weight gains. The MCT oil was doing its job! But, we were far from the “all clear!” on high tailing it the heck out of there. Claire had made some good progress with her feedings, but she was still inconsistent with her on-demand feeding. She needed to be able to drink a certain amount daily for three consecutive days.

Fast forward to July 10th, Claire was making progress but the reality of making it home by the time the novena ended (4 days) wasn’t looking good. I remember leaving the hospital that night, and I prayed, “God, from my view, things don’t look so good. But Iknow you are a God of miracles and Your ways are not our ways. You can still make this happen. I will not lose hope.”

The next morning I walked into Claire’s hospital room and was greeted by a very enthusiastic nurse who old me Claire had rocked her feedings the previous night. And here is how God works in mysterious ways.

That night, Claire had been kind of fussy in her crib. Our nurse consulted with the doctor on call, telling her she thought Claire was fussy because she was hungry. Claire hadn’t been consistent yet with on-demand feeding and the doctor told the nurse to hold off for a little while longer until her next scheduled feeding. But our nurse, smart and intuitive to Claire’s needs, insisted that she be given a bottle. Thankfully the doctor was open minded and said “Ok, give it a whirl.”

Lo and behold, our feisty little fire cracker downed that bottle! At the very last minute to keep on track with that July 14th “go home” date, Claire started her on demand bottle feedings. Now, the key was keeping her on track. That nurse was our answered prayer, our advocate for Claire when we, as parents, weren’t there. God provides for us in ways we would never have dreamed.

Day by day, bit by bit, our sassy premie girl was adding weight, keeping it on, and continuing her on-demand feedings. With weight picking up, she was also keeping her temperature stable and was able to be in a “big girl” crib (another requirement to be able to go home).

On July 12th we were told if she kept it up and passed her carseat test (which she had failed once before), we could go home in two days! My prayers continued with a new fire and zest; I knew God had His hand in this.

On July 13th, Claire passed her carseat test.

On July 14th, exactly nine days after I began the novena to Our Lady of Perpetual Help and 10 days after that doctor gave us news that sucked every ounce of hope from our hearts…

Claire. Came. Home!

God answers prayers. God works miracles. We need to be brave enough to ask.

 

The sweetest picture of our oldest meeting his baby sister for the first time… five weeks after she was born on our “Going Home” day!

The sweetest picture of our oldest meeting his baby sister for the first time… five weeks after she was born on our “Going Home” day!

Our oldest attended VBS last week and this is one of the songs from the soundtrack and it seemed fitting for this post. If you’re not into the cheesy lip-singing and dancing, do what I do and play the song, but minimize the screen so you can enjoy the music but don’t have to watch the video 
https://youtu.be/WJgIPk_NkZY 

Bridget Aschoff
One of a Kind

In some instances, ignorance is bliss. In essence, what you don’t know can’t hurt you. For three and a half years we lived in this kind of limbo. Claire would exhibit different behaviors, features, and qualities but she never quite fit into any certain category. We’d go to doctor’s appointments and mostly would hear “hmm…that’s interesting. I wonder why she does that…” or “hmm..that’s interesting. I can’t quite pinpoint why she has that…”

Last December we spent a grueling day at the local Children’s Hospital and were visited by a range of specialists (it’s called a CDC – child development clinic – basically a one stop shop for medically complex kiddos). We saw: PT, OT, ST, Neurology, Genetics, Pediatrician, and Orthopedics. It was a beautiful but exhausting day and we were able to visit with all of these specialists in one day, but we still had more questions than answers, and so, her medical team decided to run a gamut of tests:

Brian MRI (her 4th)
Bone survey
Genetic Testing

LONG story short (because insurance never makes anything easy) we narrowed down a day: May 15th, for all of these to be done. To be quite candid (because I don’t really know any other way to be) my stomach has been in a knot and my mind a little scattered since that day and as we’ve waited for the results.

I have had an internal struggle between wanting to know the results, but also not wanting to know because then I could continue in my ignorance. With ignorance there is some bliss, but more powerfully for me, was the feeling of uncertainty. And the devil…he loves uncertainty because that’s where he builds fear.

Fighting fear, particularly as it pertains to Claire, is an every day battle for me. Some days are easier than others. And some days, the waiting days, are really really hard.

We waited a week to get the brain MRI results, which we were told we could check online through our patient portal. So exactly a week after her MRI, I logged on…only to find out we hadn’t created a patient portal (face palm) and had to wait another grueling seven days for it to be activated. Ugh.

Here’s what happens when I wait:
I get nervous. I go to the bathroom…a lot. I pray. I feel peace. That wears off, and I worry some more. My focus is shot. I keep playing every scenario in my head on what the different results could be and how we will handle the news. I lose sleep. I pray some more. I feel comfort. It wears off and I fall into the same torture chamber of uncertainty. Oh, how the devil loves to get into my head. And I let him. Until I realize that’s stupid and start praying more, which always helps.

After seven more days of waiting, I was finally able to login to her patient portal. My hands were shaking, palms were dripping with sweat, heart pounding, and my body was mostly numb. What would the results show…did I really want to know? Did I really not want to know? Ready or not, it was time to check.

Sure enough, the brain MRI and bone survey results were in and even thought my husband wasn’t home from work yet, I couldn’t stand to wait another second.

Everything on her brain looked stable, Praise God! There are no words that can fully capture the wave of relief that swept over me. Knowing her brain wasn’t showing signs of negative changes or degeneration, I knew I could whatever else was thrown at us.

Her bone survey had the same findings; nothing new. Her bones were age appropriate, mostly proportionate in size, and confirmed that growth hormone (which had been strongly recommended but I had strongly declined) wouldn’t make a difference for her at this point.

All good news – two down, one to go.

We were told that the genetic testing could take 10 – 12 weeks. I was able to shove that thought to the back of my mind for most of the summer, although it still lingered and you never really forget. June and July were filled with the chaos of summer and I kept telling myself “enjoy this time, come August you can start thinking about the results.”

August 1st came, and I began checking my email like a mad woman. Logging in daily with the same feelings as before: anxious, nervous, sweating. Would today be the day the results came? Each time I logged in and we hadn’t gotten anything from her doctors it was a mixture of relief in being able to live in this “ignorance” one more day, but also the dread that I’d have to check again tomorrow. The emotional strain was equally annoying and exhausting.

Each day in August I replayed this game. August 15th marked 12 weeks and when it came and went with no results I knew … they had found something. But what?

September started the same way August did with me checking my email religiously and coming up empty.

I was finally fed up. I told my husband “If we don’t hear anything by September 15th, I’m calling the geneticist.”

Guess what … September 15th … crickets.

All right…fine. I’ll call – ugh. So I called, and of course you can’t get through to anyone on a first call and so I left a voicemail on a Monday afternoon. Tuesday came and went – nothing. Wednesday came and went – nothing. Until I was pulling into the  garage after picking the kids up from daycare and I heard my phone ring. I immediately recognized the first three digits of that phone number (because a mom of a medically fragile kid always knows the numbers of the doctors office). My stomach dropped, my heart raced, and I reluctantly, yet excitedly answered the phone.

“Yes, this is Claire’s mom. Yes, I have a moment to talk.”

“We’re sorry it took so long to get back to you. When her results came back, they were so rare that we had to really sit down and figure out what they meant.”

Oh boy. This was going to be interesting. I found somewhere to sit down, not knowing the impact of what she was going to tell me.

She was kind, gentle, and sweet as she patiently filled me in on the results and answered all of my questions as thoroughly as possible. I wanted to know every little detail, but there were two answers that were most important for us:
1. Will this affect her life span?
2. Is this something we could pass along to future children?

1. No.

And

2. Not likely (less than a one percent chance).

Almost three and half years of waiting, wondering, and worrying melted away in that moment. Some how, I didn’t cry. I think I was so relieved to finally have those answers (particularly because they were what I wanted to hear). And while we don’t know what her condition all entails, we finally know what it is. We have found the why Claire is … Claire.

In a nutshell here’s what we now know:

She has a very rare gene variant that they believe caused her ACC and consequently the subsequent challenges she faces: low muscle tone, delayed speech, delayed fine and gross motor skills.

There was only one other case study they had found with this gene variant. While Claire and this other girl share some similar qualities, they are more different than alike. So it’s no wonder doctors aren’t able to fit her in this category or that category…she’s all her own and she remains a medical enigma. One of a kind.

Because there isn’t much known yet, there’s no telling what Claire can and cannot do. Some people might find that concerning, but the way we see it, the sky’s the limit and we’ll do whatever we can to provide her with the resources she needs to reach her full potential. We’ve got a long way to go (like…a lifetime); her path will be different, her timeline of achievements likely won’t mirror those of her peers, and she’ll still face many challenges because of her condition. But you better believe we’ll be celebrating every inchstone and milestone when they come.

The outcomes of those test results are the best case scenarios, in our eyes. And for that, I am and will continue to give praise, glory, and thanksgiving to God. For holding us close through the storm, and fulfilling the words I heard in adoration over three years ago:

Your child will be fine.

(fine is such a subjective term…couldn’t God have used something a little more clear… that would have been really helpful the last three years…)

Our sweet Claire…

She’s strong, brave, and resilient. She marches to the beat of her own drum and she really doesn’t care what anyone else thinks. We can’t wait to see the barriers she breaks, the successes she has, and the obstacles she overcomes.

Waiting for results from Claire’s tests always (because this isn’t our first rodeo) tends to fill me with the fear of the unknown. The unknown is a mind game the devil uses as deception to get me to worry and waste my time playing the “what if” game, rather than leaning in to God in receiving his peace. This summer, a new song came on the Christian radio station and I adopted it as my anthem. It put into words what my heart wanted to convey to fight the enemy in his desire to take over my uncertainty. This song is so powerful and empowering that I can rarely get past the first few words before the tears start flowing. I can sing the words with as much zest as Francesca, but it’s really too bad I can’t sound as good as she does …

Bridget Aschoff
Perfectly Imperfect

It has been quite a while since I’ve had time to sit and write, and boy have I missed it! Even though it’s been weeks since I’ve written, my mind hasn’t stopped thinking about what is best to share next.

For months before Claire was born, it seemed like everything surrounding her and my pregnancy was so closely monitored. We had to make sure we kept tabs on her because no one really knew what to expect with her growth and development since we had refused any genetic testing at that point due to the potential risks while our baby was still in utero.

Once she was born, the hype and chaos with doctors only heightened. Life in the NICU is such a roller coaster of emotions. And, for me, the stress of the unknown was always hanging over me like some dark cloud that kept following me around. I remember having a pit in my stomach most days as I drove to the hospital wondering how Claire had done the night before. What would I be walking into? What problems came up? What issues were resolved? And that same pit would return as I drove away — half of my heart left at the hospital while the other half waited at home to see mommy after a long day.

Anyone who has experienced life in the NICU, no matter how brief or how long of a stay, will tell you it’s one of the most bittersweet experiences. It’s sweet because you know your baby is in good care. It’s sweet because (selfishly) you don’t have to cook and you can eat french toast every day and no one judges you (ok, maybe I’m the only one who ate french toast every day, but I’m not ashamed to admit it)! It’s sweet because beautiful new people and relationships are brought into your life that never would have been otherwise.

There’s also a side to life in the NICU that’s very bitter. It’s bitter because for every one step forward there seem to be two steps back. It’s bitter because your tiny little baby is struggling and nothing you do or say can make it better. What was particularly bitter for me during this very early part of life with Claire was how much of a medical enigma she was. She struggled in so many areas; maintaining her temperature, apnea of prematurity where she would randomly stop breathing and turn blue, and she was sooooooo slow to gain weight.

With this whirlwind and roller coaster of highs and lows, the five weeks we spent in the NICU were exhausting physically, mentally, and emotionally. Reflecting back, a lot is a blur. I remember the social worker at the hospital recommended journaling. I thought to myself, “Hell no. This sucks. I don’t want to remember any of this!” But instead I smiled, took the notebook, and left it sitting on the table for five weeks…unopened.

Luckily, I do have several very vivid memories from our 35 days in the NICU because they left a lasting impression on my heart. There were days when I felt like our room had a revolving door and specialist after specialist would come and look at my daughter, trying to pinpoint what was “wrong”. I would feel so frustrated and so defeated as each one would come in. They’d check her eyes, her ears, her nose, take a heel prick for blood work, do a brain MRI, do a bone survey…I literally felt like I had met every local doctor and still no one could pinpoint what was going on. I think this is when my heart started getting hardened towards some doctors. I knew it was part of their job to come and look at her, but so much of it seemed incredibly impersonal. Find the missing piece, solve the puzzle was the mentality several had. There were times where I felt certain doctors cared more about their ego and their need to put a name to what she had than about who she was. 

We had a lot of visitors when we were at the hospital, but one visit in particular had a profound impact on me.  If you’ve been following Claire’s story, you’ll remember the post that recounted a brief yet beautiful rendezvous I had with my grade school BFF a few months before Claire was born.

I had promised my friend that we would stay in touch and I would keep her updated on how our baby was doing. I messaged her not too long after Claire was born to give her the usual details: birthday, weight, height, gender, name. Well, as it turned out, she lived literally five minutes away from the hospital and maybe a week or two after Claire was born, she came up to visit. When she visited, Claire had already been seen by a multitude of doctors, and my head was spinning with all of the “We’ll just have to wait and see,” comments we kept receiving.

Our baby girl was so tiny. When we held her, her itty bitty toes would be at my elbow and her head could rest in the palm of my hand. It’s almost unfathomable now. Although my friend later admitted to being a bit intimidated by how small and seemingly fragile Claire was, she came to visit and was hardly done scrubbing her hands in the hospital room sink before she scooped Claire into her arms and snuggled her in close.

“Oh!” she exclaimed, “she’s so perfect!”

And that simple expression, said with so much excitement and love, stopped me dead in my tracks. It completely changed my perspective on this challenging circumstance we had been dealt. That was the first time, in over five months, that anyone had used the adjective “perfect” to describe my baby. And it was the first time I started looking at her that way, too.


Claire6.png
NICU & Nurses

While Claire was whisked away to the NICU in her NASA-like baby incubator with my husband trailing behind the swarm of doctors (Claire’s very first VIP escort), I stayed behind in the delivery room to “heal” aka eat my french toast. After my hour was up, Mary (our L&D nurse) wheeled me up to my recovery room. We did some chit-chatting with the nurse who would be taking care of me, but I was getting a little antsy because what I really wanted was to be with my baby. Eventually we were able to switch the sign outside of my room from “Visitors Welcome” to “My Heart is in The NICU” and away we went.

When we got up to Claire’s room, the first thing I noticed was that her room (four walls shielded off by a glass door) was decorated with these cute little sea themed window clings and her name was big and pink “CLAIRE”. It was something very simple, but it made my heart so happy.  I actually developed a type of odd emotional attachment to those cute decorations, and on a particularly hard day (several weeks down the road) I bawled my eyes out when the students who put the decor up came in and switched them out with a less than impressive new set of stickers. Oh how the NICU coupled with wacky hormones can bring out the most irrational emotions in a mom!

The next thing that made my mama heart swell with pride was that by the time I got up to the room, Claire had already been given a bit of a bottle– and she drank! Before she was born, we were told the suck-swallow reflex might not be present and she may not be able to eat on her own. But only a mere hour after her birth, she was already proving what fighter she was going to be!

The doctor who was admitting us spent a little bit of time introducing himself and talking about a few things regarding Claire and our stay at the NICU. He told us that her physical exam after birth looked good, and the fact that she was able to drink from the bottle was a good sign. He expected that she would only be in the NICU for about 4-5 days. Oh how wrong he was. Luckily, I had mentally prepared myself that we would be staying at least until her due-date (4 weeks away) and I’m grateful I remained cautious regarding his prediction. As the weeks slowly crept by in the NICU and we rode the emotional roller coaster of extremely high-highs and incredibly low-lows, I found myself becoming resentful towards this doctor and his unintentional false hope that he planted about being discharged. It was my first (harsh) reality check that Claire was going to be a medical enigma for doctors.

While that particular doctor left a bad taste in my mouth, our good experiences far out weighed the bad. I can not say enough about how phenomenal Claire’s nurses were. These women (and one man) will always have a very special place in our hearts. They took care of her and loved her like their own. They came to know the differences in her cries (was she mad, hungry, or poopy), they were able to anticipate if she would need an early feeding or maybe just a few more snuggles, and most importantly, they filled in when my husband and I couldn’t. They pampered her and spent time cuddling her during the times we were at home with our son.

As I reflect back on these beautiful nurses, I’m flooded with memories that bring tears to my eyes. Like the time I came in one morning to a new picture on Claire’s door. Her night nurse had put a little bow on her head and conducted a photo shoot while Claire was wide awake one night. She had put the picture on pink and purple card-stock with the quote “Though She Be But Little, She is Fierce.” and hung it on her door. That picture is in Claire’s “love box” and we will treasure it forever.

Claire4.png

Or the time Claire finally finished her first bottle. Her nurse took the bottle, filled it with little cotton balls, and decorated it with a note that said “Claire’s first bottle!” and set it on the counter for me to see first thing the next morning. I cried out of excitement, relief, and joy as soon as I saw it.

Claire5.png

That same nurse took Claire out of her crib on the 4th of July and snuggled her near the window so the two of them could enjoy the fireworks together that evening. It brought tears to my eyes to picture the two of them standing by the door, Claire nuzzled in her nurses’s arms as they watch the black night sky explode with colors of red, blue, purple, and green.

Claire won’t remember these moments, but I will never forget them. These were all moments of love. Love for a child who isn’t your own. The love and support that helped bring some normalcy during such a stressful time. The love that breaks the barriers of a “job” and turns it into a “vocation”.

We spent five weeks in the NICU and during that time, I talked more with Claire’s nurses than pretty much anyone else. We had conversations about family, friends, God, shared funny Youtube videos, and they helped me keep my sanity. They were always there to provide an encouraging word and give gentle and loving suggestions to help me, help Claire.

This post comes at a good time (thanks, God!) because this past week was teacher and nurse appreciation week. To all nurses, thank you for what you do. Your job has so many emotional, physical, and mentally challenging moments, yet you’re expected to “keep it all together” in front of your patients even if inside you are breaking down with them. Thank you for the extra hours you put in — when your 12 hr shift turned into 14 without compensation. And thank you for your love, support, kindness, and encouragement. You are making a difference and leaving imprints on the hearts of your patients day in and day out.


Bridget Aschoff
February 20th - The First Day

We all have days that are burned into our minds. Days that seem to carry with them their own identity as if this day is alive itself. The day becomes a friend, or perhaps a spited enemy. These days can bring us to life or can be days that bring indescribable dread, depending on what kind of story they’ve imprinted on our lives.

Some of these kinds of days are filled with smiles, joy, and laughter: a birthday, a wedding anniversary, a holiday.

Others totally encompass us like a thick, unending fog making it near impossible to navigate through no matter how quickly you try to drive. The weeks, days, and hours leading up to these kinds of days can be crippling. February 20th is one of those days for me.

This year as February 20th rolled around, I thought to myself “Wow! It’s been three years.” Three years since the feeling of numbness, fear, and uncertainty jumped in the driver’s seat (uninvited, mind you) and started driving me full speed down a road I never imagined I’d travel.

February 20th, 2015 was one of the most traumatic days in my life (so far). My husband  and I went in for our routine 20 week ultra sound to check in on our sweet little bundle of joy that was quietly knit away in my womb. Leading up to that appointment, I had an unexplainable sense of uneasiness about the pregnancy. Some might call it paranoia, others might call it motherly instinct. Either way, I distinctly remember feeling from early on in the pregnancy that something was different…something was “off”.

We went into the ultrasound room, my bladder so full I literally remember feeling like it was going to empty itself all over the hospital bed if the sonographer put one extra ounce of pressure on me! The tech was kind and cheerful as she asked us if we were going to find out the gender of our baby, to which we smiled and said “No! We want it to be a surprise.” Joining in on our excitement, she told us she would have us look away during “that part,” and she began the ultrasound.

She was zipping right along: arms, legs, torso, face, until she came to the brain. At this point, things slowed down. She checked. And rechecked. Took a few more angles. Checked again. I can still hear the buttons from the mouse and keyboard “click” “click” “click-click-click”ing in my head.  I felt uncomfortable (and not just because my bladder was full), but I tried to keep an upbeat spirit. She got quiet and the atmosphere in the room changed. There was a switch in the mood. Things felt heavy.

When I was finally allowed to get up and go to the bathroom (which was a relief!), she wouldn’t make eye contact with me. As we were leaving, I tried smiling and telling her thank you, but she didn’t seem to notice. The uneasiness was back and it was strong.

We had about an hour in between our ultrasound and follow up with the OB, so we left to grab some lunch. At this point, I think my husband and I both knew something was off, but neither of us want to bring it up. So, we ate our soup at Panera in a fake bliss, talking about all things except our littlest miracle I was carrying.

We arrived back at the hospital and were taken to our room. That wait seemed to last forever. Once the doctor walked in, before she could even say a word, the expression on her face said it all. Something was wrong. Something was seriously wrong.

“We need to talk,” she began.

“Is everything okay?” we asked. Of course it wasn’t. We could already sense that, but it seemed like the right thing to ask in the moment.

“No. The ultrasound shows that something isn’t right with your baby’s brain. We aren’t exactly sure what. But, this is serious and is something to worry about.”

My stomach dropped. Any color I may have had in my face left. My entire body went numb. I wanted to puke.

“Ok…what do we do?”

“We are sending you upstairs to see a high risk doctor. They are expecting you, so you can go ahead and head up there now.”

And so we did…and by “expecting” I guess she meant sit in the waiting room for an excruciating thirty minutes. We sat anxiously while doors opened and closed. Each time my heart racing in anticipation for them to call our name, and each time sinking when they didn’t. Until they finally did, and we somehow pushed ourselves out of the seats, picked up our feet and walked back.

It gets a little hazy here. Between my blood pressure being taken (because what better time to take someone’s blood pressure?!), answering questions about my family that had no other purpose than to take my mind off of the real reason we were there, I don’t remember much until the doctor walked in.

He explained to us that from the looks of the ultrasound, it appeared that our baby did not have a cerebellum. But, depending on how the baby was positioned during the original ultrasound, he needed to do repeat one to double check.

With my hands ice cold and the rest of my body numb, I reclined back for another look at our baby.

He began just like the sonographer had done just a few hours earlier. “Click,” “click,” “click”.

“I can see that your baby DOES have his/her cerebellum, but based on what I see, I think perhaps he or she is missing the Corpus Callosum.”

The WHAT?!

“Corpus Callosum (yeah say that 10x fast)…it is a tiny bundle of nerves that connects the two hemispheres of the brain. But, because of how the baby is positioned, I can’t be 100% sure. So, we are going to schedule an in-utero brain MRI.”

The doctor took some time to talk to us about Agenesis of the Corpus Callosum (ACC) and what it meant, how many people it affects, etc. I honestly don’t remember much except a few key things:

  1. It was rare(ish). I’m now learning it’s more common, but the spectrum is so varied.

  2. The spectrum literally included EVERYTHING from my baby being born in a vegetative state to never knowing something was missing.

  3. Sometimes ACC is connected to another syndrome, we won’t know until the baby is born and we do genetic testing. Here are few syndromes that might be connected, but don’t google them. We’ll cross that bridge when/if it comes. Also, if another syndrome is linked, depending on what the syndrome was, the baby may not make it.

  4. I was terrified.

After talking with many nurses and waiting an eternity, we finally had an MRI scheduled four weeks out, down at the Med Center. Four long, excruciating weeks.

“Try not to worry too much (SERIOUSLY?!) between now and then,” my doctor told me with a smile and a hug as we were leaving. So, I was left with that, and a few syndromes NOT to google, because looking at the pictures might cause more anxiety.

February 20th, 2015 was the day our journey with ACC began. This was the first day I had to walk around pretending things were okay, and knowing deep down that they weren’t. The first day when people asked me how my pregnancy was going – and that I looked great – and I had to smile and say things were “fine,” because if I alluded to anything else, I might collapse out of exhaustion from the sorrow I was carrying. The first time I felt the kicks of my baby, that once brought such joy and now brought such heartache. The first day of putting on fake cheerfulness when all I really wanted to do was crawl in a dark hole to escape this painful circumstance that had now become my reality. It was my first day of living with debilitating fear and haunting of the unknown. The first day of tough conversations with my husband about the “what ifs”. The first night of nightmares.

Each year February 20th rolls around and my memories play a cruel trick. The anxiety, fear, and numbness all return. I’m reminded of the uncertainty we faced then, and how the unknown is still a major piece of our daily life. I understand the argument that the unknown is really a part of all of our lives. That’s true. However, when you’re dealing with a medically fragile human, the unknown becomes so much more ambiguous.

Three years has done a lot to change me. While February 20th still came with it’s dark cloud for me this year, I was able to find a silver lining. I am beyond grateful that no doctor ever mentioned, not even once, terminating our pregnancy. It would have never been an option in our minds anyway, but I am so thankful that I was surrounded by doctors and other medical professionals who comforted, listened, and advocated for me from the start.

If you’ve read this far, bless your heart. I tend to get a little winded. Reliving and remembering that day (and actually writing it out) brings out all the feels. Thank you for reading, for caring, and for letting me be completely vulnerable.

 

 

 

 

Jennifer Maher
Stop, Baby Time!

I went to go bury my emotions in small twist ice cream only to find out my favorite place on planet earth was closed because it was a MONDAY. How fitting for a Monday and a roller coaster of emotions. So, I settled for Dairy Queen.

When my husband got home, I had to break the news to him that we would be having a baby tomorrow.

“But…I have basketball camp to run…” he muttered.

Oh no he didn’t!
Not any more you don’t. I admire your dedication, just not today. So that went over well…

We finalized our plans for the next day – assistant coaches could run camp, our oldest  went over to grandma and grandpa’s for a sleep over, and I put the final items in my hospital bag.

As I’m sure you can imagine, I got little to no sleep that night. I was feeling all the emotions. I was excited, scared, happy, nervous, anxious, relieved, my mind could not rest. I stared at the clock next to the bed as the minutes slowly ticked by. 6:00AM came slowly, yet way arrived way before I was ready…funny how time can do that.

As we pulled into the hospital parking lot, the reality of what was about to happen finally sank in. If things went well, we’d likely be holding our newest family member within the next 24hrs. It was both thrilling and completely terrifying.

We got checked into our Labor and Delivery room and a cheery, young, beautiful blonde greeted us.
“Good morning! My name is Mary.”
I about fell over. Mary. Duly noted, Lord. You’ve put us in very good hands. And He did. She was our best (and we’ve had three great) L&D nurse. Caring, kind, gentle, funny. Exactly what we needed.

I put on the flattering (eye roll) hospital gown, got the IV (which for me is always the worst part – I hate that thing!) in, and the pitocin started flowing. Time to rock and roll.

It didn’t take long for the contractions to start. I was naive to the fact that natural labor contractions and induced contractions are VERY VERY different. With natural labor, there is a slow ease. Not with pitocin. That stuff is evil. The work of the Devil, some say. The contractions started quickly and they were fierce. My mental goal for dilating was 5cm before getting my epidural. If I could make it to that (which is what I made it to with our first), I would be happy. I don’t know why that was important to me, but it was.

The early phases of labor were filled with walking the hallway, telling jokes, and eating orange jello. I will never eat orange jello ever again.
“Grab be a puke bag! I think I’m gonna throw up!” I some how managed to shout.
“Oh good, that’s a sign the pitocin is working,” one of the nurses said as she took her time grabbing the bag for me.
Lovely. Just what I wanted to hear. I would have rolled my eyes if I wasn’t so busy expelling my last bites of orange jello into a very small puke bag.

By 4cm, I was experiencing contractions that were way stronger and way faster than I did with our first. I was ready for that epidural.
“Hit me up, doc,” I told the anesthesiologist as I patted the my back. I couldn’t look at that needle without shuddering, but I knew with that needle came some much welcomed relief.

Sure enough, the epidural kicked in pretty quickly. Now confined to by bed, I clung to my rosary beads and was speed-praying my Hail Mary’s and Our Father’s.

Mary went to lunch, and about 20 minutes later her sub decided we should check and see how dilated I was.

“Oh my gosh! You’re an 8!”
Say what?! A 4 to an 8 in less than 20 minutes, oh baby!

And all of the sudden, things got very hectic! My OB came in and broke my water. Poor Mary’s lunch break was cut short. And before we knew it, in flew a crew of people: doctors, nurses, NICU staff…I don’t even remember who was all there, but they were packed in like sardines; I don’t know how they all fit. Talk about being overwhelmed. My OB, Mary, my husband, and I all made quick guesses on boy or a girl and then it was time to push. Ready or not (and I realized I was not), here comes baby!

Three pushes and we heard the first (of MANY) screams that let us know our baby had arrived!

IT’S A GIRL!
Claire.
4# 4oz and 17 inches of sass, spunk, and love had entered the world.

We smiled, we cried, we were overwhelmed with relief that she had arrived easy-breezy at 4:11PM, making my entire labor process roughly 8hrs- incredible considering I was mentally prepared for much longer. Her birth was so smooth and so easy, another answered prayer. I had kind of made a deal with God, and it looked something like this…
“Alright, God. I’ve already been through a lot. If you could do a me solid and at least give us a smooth delivery, it’s really the least you could do for me…” Talk about being a grateful child, huh?! Jeepers…but, despite my rude and demanding request, He provided.

All of my fears: How will I be able to love this baby as much our my first? Will I be able to care for this baby and all of her needs? What if this baby doesn’t look “normal”? …they all vanished the moment she was first placed on my chest. Her quick breathing, the pitter patter of her heart, her little baby snorts, her tiny body nestled into mine..in that moment, it was enough. As one beautifully written song says, “There’s no fear in love.” And love does not divide, it multiplies. She was absolutely beautiful and we were instantly in love with her.

We knew she would be going to the NICU, so I had braced myself for only moments of time with her. Much to my surprise, I was able to hold, kiss, and love on our baby for thirty minutes. After that time, they put her in a little baby space ship incubator (aka NICU crib) and Claire, my husband, and about a gajillion medical staff headed up to the NICU.

Meanwhile, I ordered french toast. Not kidding. It was delivered within minutes of Claire exiting the room. My OB started laughing, “You weren’t kidding about the french toast, were you?!”

Would I ever joke about food?! I was hungry, and I was not messing around. Besides the fact that I had a wonderful experience there with delivering our first, and my OB was great, I would also be lying to you if I didn’t disclose that food was another motivating factor in choosing to deliver at this hospital. I’d been dreaming of this french toast since the day I found out we were pregnant. Also, not kidding.

The road ahead was going to be far from easy- lots of bumps, set backs, and frustration would be meeting us head-on. But for now, the overwhelming sense of gratitude and relief was being soaked in. Our baby was here, she was safe, and now the next leg of our journey could begin.

 


Bridget AschoffComment
Dr. Vanilla

Even though we had gotten what we considered good news from our neonatologist, we weren’t off the hook yet. Our baby still needed to be monitored closely, so I was to follow up every two weeks. $500 per visit. That’s after insurance. This was my first reality check that this child was going to have a lot of “expensive friends” (aka specialists).

I can’t even begin to explain how incredible my co-workers and administration were during this time. I would try to schedule my appointments during the day if I had a back-to-back planning periods or as close to the end of the school day as possible. The team of teachers I worked with did everything they could to help me. From splitting up my class of students for end of the day dismissal or stepping in and teaching an end or beginning of a class, they did it without hesitation and without complaint. There multiple times I came back after an appointment with chocolate on my desk, an encouraging note, or a funny story to lift my spirits.

My administrators were phenomenal. They encouraged me that if I needed a day to just relax or get a break, to let them know and they would pull from their sick days so I wouldn’t need to pull from mine (since I would need them for maternity leave). They told me that when I needed to leave for an appointment (because getting in to these specialists doctors isn’t always a breeze and you’re kind of a the mercy of their schedule), they would ensure my class was covered and I wouldn’t need to worry about clocking in or out. They checked in on me daily. If that’s not the definition of a work family, I don’t know what is!

By the time May rolled around, I felt like I lived at the hospital. I had my typical third trimester visits with my OB and then every two weeks, check-ins with the neonatologist.

My favorite memory from these appointments was a funny conversation I had with our neonatologist. Now, for privacy purposes, I will not reveal his name, but I do need to tell you that it includes a lot of letters that are very similar to an ice cream flavor. Because I had these appointments every two weeks, I’d schedule them in my phone under “appointment with ____ (insert doctor’s name)”. You know how they tell you that autocorrect is suppose to catch words and replace them to a similar word you use often? I think there’s some truth to that because every time I would type his name, it would autocorrect it to “vanilla”. So I started referring to him as Dr. Vanilla (not to his face, of course). My ice cream obsession was real.

When I shared this tid-bit of information with him, he laughed and said “I think you maybe need to cut back on the ice cream.” He was serious. I laughed right back and said, “That’s not happening.” Sure, I was stress eating. And I was more than okay with that. $2 for my twist cone was more than worth it. I didn’t tell him I was going 3 out of the 5 days of the week…I was what you call “a regular” at the ice cream shop.

The number of ultrasound pictures I have of our second child is a little ridiculous! “Come on back, room number two.” I got pretty used to this routine. I’d lay down, tuck my shirt up under my chest, hear that tube of goop make a farting sound as it was plopped onto my belly (at least it was warm), and away we would go.

They called it a biophysical profile test.
I called it sitting-in-a-room-making-small-talk-with-a-sonographer-for-thirty-minutes.

The doctors are looking for five main things: breathing, movement, muscle tone, heart rate, amniotic fluid. First was the ultrasound to check on baby’s movement, heart rate, fluid, and muscle tone. You and the sonographer watched with bated breath for “practice breathing”. If you can’t see the baby practice breathing via ultrasound after 30 minutes, it’s time to wipe off the goop from your belly and head over to “room one” to get hooked up to another machine. And you sit. And you wait. And you try pep-talking your baby “PLEASE practice breathe! Come on! You can do it!”

At my 33 week appointment, Dr. Vanilla said they were going to be keeping a close eye on our baby because he or she wasn’t growing as quickly as they should be. Really, wasn’t growing at all. I definitely noticed this as well, because my belly was no where near the size it was with our first.

At week 34 he told me, “The baby is gaining a little weight, but still not enough. We think your placenta isn’t giving him or her the nutrition they need causing intrauterine growth restriction.”

“For the love of everything holy! So what does that mean?!”

Our bodies are quite remarkable, and even in the womb, they know what to do for survival. With intrauterine growth restriction, the blood flowing through the placenta is restricted. This can cause the baby to get less oxygen than normal. The amount of oxygen and nutrients they are getting go to organs that are necessary for survival, and the brain typically gets the shorter end of the stick in this case. Because the brain was already a major concern for us, we needed to keep a very close eye on our baby which meant biweekly visits until baby is born.  We were slowly chipping away at that deductible…

At that 34 week appointment, I was told our end goal was to get baby to 37 weeks. At that point I would be induced. Ok, I could deal with that. The school year had ended. I was on summer break. I could be flexible. Time to get the nursery ready (yeah, we hadn’t even started painting it yet!), get the crib up, things were beginning to get real. While we had toured a couple of daycare centers, we really didn’t know what our baby’s needs would be. Would he or she need a full time nurse? Would he or she be on a feeding tube? We didn’t know, so it made the search kind of hard. When I heard we only had three weeks until baby, I thought “Well…to heck with finding daycare right now. In three weeks I’ll know what our baby will need, so we might as well just wait and see.”

At week 35 I went in for the weekly biophysical profile test. Two days later I went in for my regular OB appointment. That afternoon I got a call from my OB.

“Hi! This is Dr. J.”
“Oh! Hi!” (Why are you calling me? What do you want? What’s going on?)
“So…your baby is still measuring small. We think they will do better out than in. We’re going to induce you tomorrow.”

*#%$!!! WHAT!! I was 35 weeks, 5 days. Baby was going to be born TOMORROW.

I need ice cream.

Bridget Aschoff
Right Place At The Right Time

The morning of our baby’s in utero brain MRI I woke up refreshed and well rested…which seems polar opposite to how I probably should have been feeling. But, my prayer experience from the night before gave me a “peace that surpasses all understanding,” and I was beyond grateful for that.

If you’ve ever wondered if you’re claustrophobic, go get a brain MRI. You’ll find our really quickly. The machine I had to go into made me feel like I should be an astronaut for NASA or something. The machine was a creamish color and long and narrow with a curved top, not leaving much room to move, which I guess is kind of good because I was actually told not to move.

I had to lay down in this machine for what I’m guessing was about 45 minutes because I was able to say three Divine Mercy Chaplets (which typically take about 15 minutes to pray). Of course I couldn’t bring my rosary in there with me, so luckily I’m really good at counting to ten with my fingers. I later remember my OB asking me “So, how loud was it?” To which I responded “Um… I don’t think too bad.” “REALLY?! I heard that machine is awful!” I think I was so transfixed on my prayers that I didn’t have time to think about much else.

I don’t recall much else from that day, only that we had to wait several more weeks to get our results. More waiting. More praying. More trying not to worry (yeah, right). We found out our results in the beginning of April. My brother and sister-in-law were coming into town to celebrate her birthday and I remember telling my brother we would be finding out the results from the MRI that week, so depending on the news, we may or may not be up for socializing.

The day of our follow up appointment, I was so nervous. My stomach hurt. I was going to the bathroom frequently (and not just because I was pregnant). My heart was racing, palms were sweaty. I tried praying for peace throughout our waiting, but for as many prayers I prayed and handed our situation over to God, that many times I took my circumstance back,  and tried to worry my way into making things “okay”. It didn’t work.

Our doctor walked in and his face did not give away one way or another what the results showed. He started small talking a bit, which I cut off rather quickly and asked…

“So…what’s the deal? What did the MRI show?” Shoot it to me straight, doc. I don’t have time to waste. I’ve been waiting months for this moment.

The MRI did confirm that our baby would be born with ACC. It also showed that the gray matter on the outside of our baby’s brain was fully formed- PRAISE GOD! Whatever our baby had, it wasn’t going to be fatal. He or she was going to make it. I was going to have the chance to hold, snuggle, and kiss our sweet little miracle! I cried happy tears, and of course stopped at my favorite local ice cream shop (small twist cone, please!) to celebrate.

As far as genetics were concerned and any other syndromes, we would have to “wait and see” and run tests once the baby was born. But, I could live with that. Other than the ACC, our baby’s brain was okay. I was on cloud 9. You know you’ve been through your own personal hell when a major diagnosis of your baby missing a part of his/her brain is suddenly a relief because nothing else is wrong. Perspective.

With our good news and renewed spirits, we decided we would attend my sister-in-law’s birthday party. It was to be a surprise, so we drove downtown early to get a good parking spot that wouldn’t give us away. And here’s where God intervened in a powerful, undeniable way once again.

Since we had time to kill, we got our toddler out of the car and let him run up and down the dark red brick sidewalk. I smile as I remember how his little legs with quick tiny steps would cause his hips to sway back and forth like he was trying to balance a hula hoop while he walked! Gosh, he was cute! We were talking and watching our oldest “run”  up and down the sidewalk, when around the corner came two young women and one wildy energetic dog. And what to my wandering eyes did appear–my long-lost-best friend from grade school who I hadn’t talked to in years!

I shouted her name and she and her friend attempted to redirect their K9 in our direction. With a few stern shouts and pulls on the leash, they were able to persuade the pup to come our way. We smiled, gave a hug and…

“Oh my! You’re pregnant! And is he yours, too?”
With a laugh and smile I said, “Yes!”

We introduced each other to family, friend, and dog and started to chat a little. I not seen this friend in ages (she had more tattoos than I remember her having in 8th grade ;), but God knew we needed to cross paths again. You see, she had been on my mind to reach out to because as far back as I can remember, she had been working with children with disabilities. One of her cousin’s was born with CP, and growing up, I remember her being so attentive and loving to him when he would be over at their house. And then through out middle and high school, I remember her being really involved at Munroe Meyer Institute. As far as I knew, she was still involved there and could maybe be a good point of contact for us. I thought perhaps she might know more about what our baby had or where to even begin looking for childcare.

I brought up our situation and explained a little bit of what was going on. It felt so much more natural to bring this up in person versus sending a random Facebook message to her out of the blue (which I would have done if I had to, but this was much much better).

“It won’t be easy, but you are going to be a great mom to that baby,” she told me. And for whatever reason, that gave me so much confidence.

By this time, the dog was getting restless, and the tacos they had come down to get for dinner weren’t going to order and eat themselves, so we exchanged numbers and promised to be in touch. It was April. Our baby was due in July.

“Please keep me updated. I want to know everything,” she told me before the dog whisked her away (I honestly don’t know how her arm wasn’t dislocated by this point).

I couldn’t believe what had just happened. We NEVER went downtown for anything. Of all the times. And all the places. This was divine intervention. I had no idea at the time how this brief encounter with one of my besties from the 90s was just the beginning of rekindling a friendship. I had no idea the incredible impact this was going to have on our baby and our family. I had no idea the amount of guacamole, cheese and crackers, wine, and long conversations were in store for us.

What I did know was that It felt like God was reaching down and giving me a big hug, reassuring me that He would be placing the right people in my path every step of the way.


Bridget AschoffComment
What's in a Name?

There’s nothing quite like having your world rocked and turned upside down to really fire up your prayer life. Our baby was put on tons of prayer lists, rosaries were said by the dozens (I finally had each mystery memorized…only took me 27 years!), and we clung tightly to our faith; if I couldn’t physically do anything to help my baby, I was gonna flood Heaven’s gates with prayers!

I prayed for a miracle. I prayed for peace. I prayed for wisdom, courage, and strength. Some prayers were really really big, “God, if it is your will, please miraculously heal our baby’s brain. And if it’s not your will for a miracle, give us the courage to accept what you have planned.”

Others were really really small “God, please just give me the strength to make it through my first class today.”

One day I found a flyer (I don’t even know how I got a hold of this thing…it probably fell from the sky as some sort of holy intervention) promoting a talk one of our local priests was going to soon be giving on St. Faustina. Two important things here:
1. St. Faustina is my confirmation saint, and therefore my self-proclaimed “home-girl”.
2. The talk was happening the evening before our baby’s brain MRI.

“I gotta go to that!”

I was interested in what I could learn about St. Faustina, but to be honest…I had another motive that was a little more important to me at the time. This priest has a deep love for new life. Whenever we attended a Mass he celebrated, and the congregation would walk up to receive Communion, he would always give a blessing over the mother’s womb if she was visibly pregnant. I knew I wanted a blessing from him, and the only time I knew for sure I could hunt him down for that blessing was at this talk.

My mom was feeling pretty sad for me at this point; I know how much I hate seeing my own children in pain, so having to watch me go through all of this must have been very hard on her. The good news was, she’d pretty much do anything I asked- ha! (hindsight: should have milked this a little longer…kidding…kind of) Anyway, my point is that it didn’t take a whole lot of convincing to persuade my mom to come along with me. So the night before our baby’s MRI, we hopped in the car and headed across town.

I don’t remember much about the presentation on St. Faustina. I was pretty distracted and kept thinking about how I was going to approach this priest and ask for a blessing without sounding like a total looney toon. As he was wrapping up his talk, my heart started to race. I was sweating like a pig. What was I so worried about?!

He’s a pretty popular dude, so I knew other people would want to talk to him. It was me versus the old church ladies with their beautifully permed white hair. Sorry, gals, not tonight. I fought my way through the clouds of hairspray and perfume, probably throwing elbows and taking out ankles of any poor soul who tried to cut in front of me #SorryNotSorry. Miraculously, I made it to the front of church, practically out of breath, with just one other person in front of me (she must have been in the front row ‘cuz I was really truck’n).

I waited anxiously as I wiped my sweaty palms on my pants for the thousandth time. And then I was up. It was my turn. Oh, crap. What do I say?! How do I tell him what’s going on without breaking down in front of all these old church ladies? I caught my breath and somehow came up with the words to quickly and quietly explain what was going on.

He listened closely. He listened intently. As I was speaking, the look in his eyes was one of a father’s love for his daughter: soft, caring, gentle. We were right in front of this big picture called “The Divine Mercy” which is St. Faustina’s “claim to fame”. The picture is of Jesus walking towards us with His left hand touching His heart. From His heart are rays of red and white; the red signifies His blood that was shed for our sins, and the white signifies his grace and mercy.

The priest put his hand on my head, and had me place one hand on Jesus’s heart on the painting and my other on my baby-bump. I have no clue what he said during the blessing. That’s a total blur. Here’s what I do remember…the moment he started praying, my fear and anxiety started leaving. I felt so calm and peaceful; I think some people call this “resting in the Spirit”.  I’m honestly surprised I didn’t fall asleep or fall over…for the first time in four weeks, I was completely relaxed! It was one of the most beautiful prayer experiences I’ve ever had. And… it gets better!

After he was finished praying, we did a little more small talk. I told him how St. Faustina was my “home girl” and how much I admired her. All of the sudden he goes, “Wait! I need to go back to the rectory to get something.”

With the swiftness of a gazelle and the speed of a cheetah (we watch a lot of National Geographic at my house right now, can you tell?) he headed to the rectory. Soon the church door opened again and I heard the scurry of his sandals (don’t worry he had socks on) across the tile floor.

We met over at the altar and he opened up this box. I thought maybe he was going to grab a rosary or a prayer card or something. But I was in for quite a surprise! Inside the box were nearly a dozen relics from different saints. A relic is a piece of the body of a saint (a spec of bone or strand of hair), an item owned or used by the saint (cloth from a coat or shirt), or an object that has been touched to the tomb of a saint. Because Christianity is spiritually centered, the remains of certain dead are surrounded with special care and veneration (https://www.catholiceducation.org).

If you look up Acts 19: 11-12 you’ll find a good starting point on the Church and relics. “God did extraordinary miracles through Paul, so that even handkerchiefs and aprons that had touched him were taken to the sick, and their illnesses were cured and the evil spirits left them.” And there are many more references throughout the Bible…Acts 5:12-16, Mark 5:25-34,  and Old Testament as well 2 Kings 13:20-21 to name a few.

If you want to read more in-depth on this, click here. I think the author does a great job explaining.

But put very simply, when a loved one passes, we keep pictures of them up around the house to remind us of them; relics act in a similar way. They help us remember the saints in a special way. And just like we ask our friends on earth to pray for us, we can also ask those who have gone before us to pray for us as well. We don’t pray to them like we pray to God. Instead, we ask them to pray for us and for our intentions, much like we would ask a friend on earth to pray for us. There is nothing in a relic itself that contains some sort of “magical power,” but the church teaches that relics may be the occurrence or condition through which God’s works miracles.

And here’s where God came shining through to me in yet another special way. Before we knew we were pregnant, we already had a boy and girl name picked out for our next baby. But with the change in our circumstance, somehow, those names didn’t seem quite the right fit any more. Matt and I had decided if the baby was a boy, we would name him Gabriel (after the Archangel); this name was strong and we needed our baby to be a fighter. But we weren’t sure about a girl name. We were still waiting for that nudge on picking the right one.

That all ended after father blessed our baby with the relics. One name on that list was one we had been strongly considering. As soon as I heard father say her name, I knew that was it! That was my nudge. How much more clear could He be on a name?

Father gently took out each relic, and as he did, he touched it to my belly and asked that saint to pray for our baby.
St. Anne
St. Augustine
St. Monica
St. Bernadette
St. John Chrysostom
St. John Vianney
St. Maria Goretti
St. Lucy
St. Mother Teresa
St. Faustina (what!!)
St. Clare

I went home that night and told my husband…”If we have a girl, her name HAS to be Claire.” Claire means “bright,” “clear,” “distinguished”. It was perfect.


Bridget AschoffComment
Breaking the News ... Breaking Down

After that initial ultrasound, we had four weeks until our baby’s fetal MRI. Those four weeks of waiting were more painful than listening to Sponge Bob’s obnoxious laugh on repeat (if you can imagine that). In the mean time, our doctor encouraged us to do a little bit of research in our family history to see if whatever our baby had could possibly be genetic.

In our digging, we came upon two things that really seemed the most relevant. One was that there was a family member who had PKU. If it’s left untreated, it can have some pretty damaging neurological and physical effects. The good news was, while PKU is far from easy, it is “treatable” with a very specific diet.

The other piece of information was the one that sent me into mental tail spin.

I knew that Matt’s family lost their youngest son and brother, David, shortly after he was born, but some how I neglected to remember the details, which now seemed critical. When David was born, his skull had not fully formed, making the day they said hello to him also the day they had to say goodbye. One of the things our baby’s MRI was going to check was that the gray matter surrounding the outer lining of the brain was fully formed.

And this was when the tailspin started. My mind took this information and proceeded to conjure up some very dark, scary scenarios. No matter how hard I tried to fight them, I could only suppress them for so long before they came tip-toeing  back in. They kept me up at night, and when precious sleep would finally come, they jolted me awake with panic and fear.

I felt with the deepest conviction in my heart that this was it. This was what was happening. Our baby wasn’t going to make it. It’s too closely linked to not be the answer. We should start considering organ donation. We should start thinking about a funeral.

I finally let myself do something I had been avoiding like the plague. I let my husband see me cry.

I was trying to stay positive, trying to be strong…and I just couldn’t any more. My mother’s heart was breaking- I was shattered. We sat at the edge of our couch and I buried my face into his chest..and I cried…really cried…my entire body shook…and I sobbed “What if we lose this baby?” In that moment, my prayer shifted from my yearning of “Please God, not ACC.” to begging, pleading…”Please God, let it only be ACC.”

Telling people who were closest to us was the hardest because I knew that whatever the outcome was, it would affect them, too. And for whatever reason, this brought another layer of heaviness and guilt for me. I felt like I was bringing a burden into their lives that would forever affect family gatherings, play-dates, social events, etc.

I will never forget the day I had to break the news to my co-workers, because really, they are my second family. I saw them, talked and laughed with them, and stole candy from their desks on a daily basis. In fact, during basketball season (my husband coaches) I saw them more frequently than I saw my own husband! I tend to wear my heart on my sleeve, so after 5 years working with these people they knew me pretty well. They knew my love for coffee, my love for laughter, and my love for saying the *occasional*  four letter word in the teacher’s lounge. Carrying around this secret about what was happening was something I both needed to tell, but also dreaded saying.

The morning I knew I had to tell them what was going on, I was a mess. My stomach was in a thousand knots. My throat had a huge lump that made it hard to swallow. I was fighting back tears starting at 7:00AM.

When the time finally rolled around for our meeting, everyone filed into my classroom and took a seat. I took a deep breath. I started to unravel what was going on, and I lost it. The flood gates had opened and there wasn’t any stopping them. After my secret was exposed, the gravity of the situation began to really set in. I’m sure we could have gone through an entire box of kleenex together that morning. And let me tell ‘ya, I had never been more thankful for makeup that with a few quick swipes could cover up blotchy, puffy, tear-stricken eyes.

That morning also holds one very special memory. After everyone had left, their minds and hearts a little heavier than when they came, one of my friends lingered just a little bit longer. She wrapped me in her arms, a hug so strong and tight, I was able to literally collapse all of my weight as she held me up. And again, I let myself cry that deep, sorrowful, whole body shaking cry. I’m not exaggerating when I tell you I soaked the shoulders of shirt in my tears. Good thing she had long hair so she could cover it up!

From that day on, these very special people were my rock. While the waves of fear and doubt were hitting me like a fierce ocean storm, they stood strong, unwavering in their love and support for me. Day in and day out, they looked out for me, prayed for me, made sure I still smiled. I also remember eating a lot of ice cream…

What I despised the most during this early part of the journey was a having to tell so many people what was going on. I felt like a broken record replaying the same awful song, with the same awful lyrics, hour after hour, day after day. Each time I had to retell our situation, the cut seemed to dig a little deeper.

Whenever someone told me “It’s going to be okay,” I knew they meant well, but in my mind I thought “How do you know?” I didn’t mean it in a smug kind of way, but more like “How can you be so sure? We can’t see into the future. Things don’t always turn out okay.” I wasn’t mad at them for saying this; I just couldn’t get myself to believe it…yet…

There were no right words. There was no magic cure. What I…what we… needed was love, support, and a hell of a lot of prayers. And that’s what we got. And it was enough.

Bridget AschoffComment