I had been operating in fight or flight for years.
Ever seen the movie Soul Surfer? A 13-year-old surfer girl gets bit by a great white shark and loses her left arm. Her family and faith help her find the courage and skill to surf again with only one arm. Super inspiring story, but when you’re the one being bitten in life, the process of getting back on the board means facing what you cannot change.
This is going to get dark here. Promise it’ll be quick.
When I learned my child would forever be unhealthy, mentally challenged, and ultimately diagnosed with an ultra-rare genetic disorder (CHAMP1) with no cure or clear treatment plan, I knew what this meant. Having a younger adopted brother with developmental challenges growing up, there wasn’t an ounce of hope you could bring me. I found myself looking Dread straight in the eye. Dread doesn’t allow you to see a way out. When your child is given a biological prison sentence, you have no choice but to learn how to survive a new, unfair life.
When you’re surviving the first days, even years of something permanently life-altering, you grieve.
I rolled through denial until Eloise was 2, I don’t recall anger. Bargaining with God, yes. Depression, also yes. Acceptance: I’m there for now. Let’s go back to anger.
Eloise was angry. Every day started with screaming from her bed. The kind of yelling that makes you think something is seriously wrong. That was my alarm clock for years. She screamed while I changed her. She screamed as I tried to make her breakfast as fast as possible to quiet her down. After work, more screaming. Screaming through dinner, screaming for attention, bedtime routine, wants, needs… it.was.maddening.
I was angry with our healthcare system. Hours in ER rooms, endless wait for scary health situations, appointments with specialists every week in the beginning. Our overnight and sleep-deprived EEGs were too hard for a toddler. The paperwork forced on a family with a child facing too much became my 2nd part-time job. You don’t have time to feel a certain way about anything because it’s all unfair, exhausting, and too much.
My mother took all my phone calls with occasional tears. God took all my prayers insisting this is not OK. Why her? Why me? Why us?
—————— To be human is to forever learn what it takes to be you. Adulthood is learning the things you ‘already know’ with the hope that the right message will hit at the right moment for you to finally get it… the tipping point for growth and needed change. For those with faith, a God moment.
My prayers changed from finding a way to cure Eloise to finding a way to get a happy and healthy family again.
——————
The screaming has stopped.
I had no idea the depths of joy we would feel after so many hard years. I’m surprised by how much joy I feel with a daughter like Eloise. As I listen to her ask the same comfort questions over and over or sing her favorite songs, I sometimes close my eyes and just soak in her little voice. I can’t believe I am hearing her express herself with words instead of screaming. She was in there this whole time.
“Cultivation of gratitude and joy will bring you home.”
This Feb 28, on Rare Disease Day, I am so thankful for our rare disease community—CHAMP1 families, our WNY community network and East Aurora, NY special needs families. My new prayer is that we keep figuring this out and share all that we can in the right way.
If any CHAMP1 families are curious about what’s working, I’ve added some thoughts below:
I pray. I don’t have a choice. You need to get your nervous system centered and let it out. Soul care.
Attack one health thing at a time. I was trying to solve everything at once and failed. Biggest health issue down to smallest. Check all the boxes, and get the endless paperwork into a system that works for you.
I start with natural, holistic care accessible to me and then medical intervention. Magnesium and finding ways to wear out our active child brought sleep back into our home.
If there’s smoke, there’s fire. Bad behavior = something going on with health or social/emotional care that needs to be addressed. Therapist told me “what’sthe something that should be happening that isn’t happening” – answer to everything behavioral.
Special needs classrooms, once you become school age, are the answer to a lot of your child’s needs. Too much to unpack here, but if your kid is young, a good school system is essential. We are blessed!
Metformin is magical—My daughter is overweight, obese, and obsessed with food. It’s my #1 battle with her all day, every day. Metformin was prescribed for elevated insulin management, but the side effects of this drug have been incredible. Again, too much to share here.
Parent behavior therapy — get a professional involved to help you both agree how you’re going to try tactics to improve behavior challenges. It’s too hard on your marriage trying to figure it all out on your own.
You need therapy. Check your health insurance coverage. Betterhelp.com, in-person therapy…find someone that specializes in helping parents with special needs kids. Believe it or not, that’s available on betterhelp.com
Meet people going through what you’re going through. Our school district recently started a Special Education Parent Teacher Association (SEPTSA). I had no idea so many incredible women were facing exactly what I am facing and have become a source for inspiration and understanding in our town. What a beautiful community of strength I’ve found.
You matter, too.
Cultivation of gratitude and joy will bring you home
2024 was the year Eloise really showed us who is underneath her big grin and curious eyes.
Something is working.
It’s a beautiful story to share. It has felt like a miracle. Perhaps it is. She’s changing. She’s improving at such a pace that my heart can hardly understand what’s been possible. Every month, the pace of improvement gives me hope I have not felt this deeply. More than hope for us, for her…I think of many children facing similar challenges to Eloise. Something is happening, something is working.
Why is this so hard to share?
I feel guilty sharing as I see the struggle for so many, but also…we’ve been there. I share this cautiously because I don’t really know why she’s improving. I have thoughts, but I don’t actually know. Maybe it’s just the way her genetics play out. Our prayers for improvement and a sense of nice family life feel like they’re being answered. She has the most common CHAMP1 diagnosis, a rare genetic disorder impacting her health and cognitive ability. She’s on the scale of average in the world of genetic conditions, I suppose. Again, I don’t know. I’m not a scientist. I work in retail. My professional vertical is business learning and development. You know those Moms who have all the answers? I’m the one asking too many questions.
So what’s working? She’s talking in full sentences. The girl who could only say a few words until age 3, the girl who couldn’t consistently say 1-2 word phrases in Kindergarten walked into my bedroom last week, the morning after I went out to a Christmas dinner with my girlfriends, and said, “Mama, what eat? How was friends?”
Let me unpack those two, 3-word sentences for an outsider.
She got up that morning without screaming. A year ago, she would scream away at a volume 10 until I came running into her room to tell her it was OK to wake up and get out of bed.
It’s a cohesive thought and articulate (in her way) questions.
She thought of something that happened the day before. She has a sense of time, activities etc. Not a year ago.
She cared about someone other than herself. My daughter is extremely self-centered and yet, I’m seeing this super caring side of her I never knew existed.
It felt better than normal. A normal 6-year-old (pre-forgive my generalness) might come into a mother’s bedroom before school and ask about breakfast, things they need etc. My child thought of someone else first and wanted to hear about the fun night out with friends, as that doesn’t happen too often.
This is her miracle
When I think of a miracle, I go to the Bible. Full healing. I think of Saints and pilgrimages that end in an unexplained medical cure. BTW, I do believe in all that. But for me, these 2 questions on a random Tuesday in December… I never thought I’d hear that come from my daughter.
I never thought I’d hear, “Mama, I love you.” I have and I do multiple times a day.
I never thought I’d hear, “Mama, I’m sorry. Ellie start over? (leaning in for a hug) as she practices a deep breath then a sigh as she gives a hug, knowing she needs to self-regulate.
Who is this child?
OK, weird share. I’ve been through things and am almost 40, so I officially don’t care how you take this. I dream about heaven with Eloise. When you don’t have a ‘normal kid’ the only chance you have at seeing and hearing the ‘real kid’ inside of what is in front of you is to think about conversations you’ll have in heaven one day. I daydream about it. What she will look like, act like, sound like. I’d dream of hugging her and hearing her voice sound so clear and watch her walk perfectly normal and the best part… I’d know she was not in medical pain.
Last year, I could hardly believe my eyes, but it feels like she’s achieving half of that dream. When I say she’s improving at a pace I can hardly understand, the next time I write, I’m going to give examples and get into more details about her smorgasbord of care in the future.
For now, I can hear her. She hugs me. She says I love you. She’s beautiful. She can walk with more confidence. She’s skating, she’s singing, she has friends, she dances, she pretends to read, she’s not getting sick all the time, she’s good with healthy choices in most cases… I’m no longer daydreaming.
Update:
A week after I wrote this, we’ve had a lot of behavioral regression. The winter break was tough on her and us. Tantrums, screaming, and over-the-top emotional outbursts. Travel, change, and lack of routine, paired with holiday and celebration expectations, threw her and us for a loop. I think about how exhaused we are and can only imagine her thoughts and feelings she still struggles to express. We also know when she progresses, she wants more independence and has more of an opinion. That’s healthy, and we do encourage that! The challenge is finding ways to do this in a safe, healthy way when she doesn’t want to do something or is making harmful choices.
I look forward to NYS respite care which should hopefully come in 2025. It was a year of paperwork and approval to get to the 1+ year on the waitlist because care is so limited for people like her. Systems are surely underfunded and broken. We are thankful for our crew of family, friends, and sitters who keep trying to support her when we need help! Finally, to our friends, family, and co-workers who never know what we’re really facing at home but continue to give us grace and the benefit of the doubt when we’re in a rough patch with Eloise…we appreciate that more than you’ll ever know.
As I head back to work after three glorious months, it feels different knowing this is my last baby.
We’ve developed daily rituals that’ll never be the same, but nighttime routines remain ours. Each night before bed as I break open the wheat germ oil gently working it over your scars, I can’t help but marvel at how well they’ve healed. I think about how I’m going to tell you about them…how incredibly proud I am to be your Mom.
Sweet baby Audra Rose (calling her Rosie) came into this world completely perfect with stunning blue eyes and a full head of hair. I couldn’t have dreamed up a more picturesque delivery experience. As my husband handed Rosie to my oldest, hours after my delivery, I gave him my motherly reassurance, ‘See, I told you this was going to be great…she’s perfect!’ His eyes and constant pleas to stay longer were well understood—he didn’t want to let her go.
My husband and I were working on our sales pitch to the hospital staff. Day 3, I was ready to show-off how well I’m walking post-surgery, how great feeds and BMs were going. We were ready for baby to be home, my victory beer and our beds.
There was just one thing missing. Why wouldn’t they bring our baby back to us from the nursery?
‘We are waiting for the pediatrician to look at your daughter. We don’t like what we are seeing and he’s waiting for X-rays to come back.’
Shit.
We looked that doctor in the eye and said, ‘We’ve been through a lot medically with our other daughter being diagnosed with a rare genetic condition only 150 people in the world are known to have. Her condition is de novo, so likely unrelated. Whatever it is, we can handle it. How serious is this?’
The pediatrician gave us incredible sympathy while flipping over our dealt card. ‘I’m going to give it to you straight. This is a major genetic defect. 1 in 4500 kids experience this. It isn’t an emergency but it’s urgent. Your daughter must have surgery very soon. We are transferring you to Children’s Hospital immediately.’
It all rushed back to me as tears poured down my face. I remember the wires. All the wires. Watching my brand-new baby Eloise be taken from my arms. You don’t ride with baby to the hospital. Separated and unable to hold just days into life. Here we were, facing this yet again, but from a place of experience.
No parent should have to go through this once, let alone twice.
When I saw her prepped for transfer, I didn’t cry this time. I just soaked in the moments of holding her, reassuring her it was all going to be okay, but this isn’t fair and you don’t deserve this.
We had hours to decide. Do we fly to Boston, the #1 place in the world for this surgery? Do we take her to our favorite children’s hospital outside of Buffalo, CHOP (Children’s Hospital of Philadelphia)? Wait, how do we even do this? Can we transfer a new baby to a major hospital when this is considered a ‘common’ surgery our local children’s hospital can handle?
Many close to us had an opinion, but what I remember most was the clarity in the decision that came when I heard from my brother, ‘I’m so sorry you’re going through this again, but you and Eric are coming at this from a place of experience. You will know what’s best for your daughter and your family. Let me know how I can help.”
His steady reassurance gave hope in that moment. We learned as much as we could, quickly, about her condition to make an educated decision. Weighing all options as we tried to pray about it, we chose to stay local. Our biggest fear was the timing of all this going into New Year’s Day. We were terrified of getting the newest staff with a hospital full of people that didn’t want to be there.
…
The sound of relief that cried out of my mouth could be heard down the hall as they called from the surgical room to tell us it went as well as they could have hoped. For some reason, as I thanked our surgeon in her recovery room, I wanted to hug his mom. I made sure to lock eyes with him saying, ‘YOU did a great job today. Thank you, thank you!’
We had the best surgical team.
In the hours ahead, watching her lay medicated and still, we rang in the new year listening to beep…beep, IV occlusion alarms and hoped this would be the hardest day of her life, one she will thankfully never remember.
NICU life is existence. You pray for time to be here already, but instead it’s measured in slow drips of milliliters pumped every 2-3 hours for your baby who really needs it.
It’s walking in each day hoping for that damn chest tube to finally come out so she can ween off Morphine.
It’s hours of staring at respiratory rates praying to God it can stay under 80 so we can keep the breathing tubes out of her nose.
Its daily heel pricks for blood as she cries out in pain for yet another test.
Every 12 hours you get a new nurse. Whoever walks through that door has their own tone for the day, and what I eventually learned, the decision to let me hold my baby or not. Our surgical team gave the A-OK for us to hold Rosie, but ultimately it was up to the nurses’ comfort moving her from the bassinet to our arms. Of course we asked (okay, insisted) we have nurses who were comfortable moving her, but it didn’t always happen. It was a whole thing. I get it, safety first, but holding her was everything. All our nurses were fantastic, but this was tough.
One evening, I walked in for my overnight shift in the middle of a lovely snowstorm where I’d be bunkered with my NICU babe for days and asked if it’d be okay if I held her today. I didn’t have to brace for the awkward ‘not today’ response as this nurse delightfully said, ‘Of course you will! Babies heal in their mother’s arms.’
Gah I can’t recall her name, but her face and words are embedded. As we spoke about challenges of pumping, caring for such a fragile babe, diaper changes, etc., each response from this nurse was,
‘Of course you can!’
‘Sure. See you got this.’
‘See, you know!’
THIS I know well. She’s definitely got it. It’s my #1. On this day, I needed it more than ever.
It’s my favorite thing working with any leader or co-worker, it’s one of the best parts of my relationship with my husband, it’s a tried and true way to build trust as a parent, it’s engrained in all my very best friendships…
giving people benefit of the doubt.
She gets it.
I called my husband immediately. God just knew this is what we needed today. I LOVE this nurse.
Weeks later as we anxiously bottled our babe towards daily ML goals to get her home, my husband and I were taking our daily walk down the NICU hall and I saw her…that amazing nurse! I couldn’t stop my obnoxious grin as my husband and I said at the exact same time watching her with a new nurse…‘OF COURSE she’s the trainer!’
Having worked in learning and development (L+D) for many years, my heart was full.
How blessed they are.
How blessed we are.
As you can see, Rosie is doing incredibly well, growing stronger and healthier every day. Everything she has faced seems very overcome-able.
The best part of maternity leave was seeing how excited the kids were to hold Rosie each day. They’d Purell their day away hoisting the Boppy pillow around their waist ‘all ready’ to hold baby sister. We’d reassure their beautiful, nervous energy, guiding their hands and arms that they could hold her safely. And as they propped her face into view, I could see it there too…even that sweet baby gives them the benefit of the doubt.
I was attempting to drop my 4-yr-old son off at daycare, but he wasn’t having any of it. His ‘Mom, please don’t leave’ crocodile tears were so intense, he threw up all over the classroom floor. Every bit of my heart wanted to grab him, go home and never do this again. As I reached for towels to clean up the mess, this little girl cried out…
Ewwwwe! That’s SO gross!
“CARING HEARTS! We will have caring hearts!”
Silence.
I could have laughed and cried at the same time. That teacher’s response was so genuine and perfect.
I blotted the puke off my son’s face, looked him in the eyes and reassured him, “You are so brave, you got this. You’re going to have a great day. I can’t wait to see you tonight. You know I love you.”
Time is my currency.
Time drives the day. I either earn that time with my family
Or….
I spend the evening catching up with work. Lately, it’s been more of the latter. That kid deserves his Mom fully present in the evening, so I’ve had to find ways to be more efficient, to love deeper and forgive myself for what I cannot do. I’ve also had to recognize that I’ve chosen a very full life that makes me insanely happy, but my time is important.
The #1 thing I’ve learned this year is if work-life is hectic, my husband has to be my #1 priority. I have to pour even more energy into the man that’s helping to hold it all together, ensuring we remain our go-to people amid whatever life throws at us. I’m grateful for such a hard-working, wonderful husband and father, but he needs to know this and be met with grace, especially when I need to lean on him more. He also needs time away from it all, as do I, so we’re getting better at prioritizing that!
Children grow up too fast…says the woman wishing her new baby would sleep through the night. I purposefully look my son in the eyes when he wakes up and before he goes to bed so he knows I am his person, always. Time with him, my daughter, just being present, playing, singing, dancing…it’s the heartbeat of our happiness grounded in prayer as we thank God every day for a ‘nice day’ before we kiss goodnight.
Work is where I will always need work. I strive for ‘get it done’ discipline, but I’m learning to ask for help. This next year, my goal is to be more simplistic and purposeful with my energies but also more forgiving of shortcomings…to have a caring heart, to be present, is just as important in our ‘big person’ world as it is to a preschool classroom.
That one time my husband dressed my daughter in Carhartt ☝️
Voice With Heart 