When hope happens

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.

1. 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.
2. It’s a cohesive thought and articulate (in her way) questions.
3. She thought of something that happened the day before. She has a sense of time, activities etc. Not a year ago.
4. 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.
5. 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.