My baby girl turns 1-year old today! Happy Birthday Charlie! Oh geez you guys – I’m using an exclamation point when I say that but if I was being really, really honest with you… if you were here with me while I’m typing this here post… you’d know that I’m actually on the verge of tears because somehow I’m having an incredibly hard time with this — with her turning one. Siiiiigh. This is not an easy post to write. And I don’t want it to be a downer either. It’s my baby’s birthday! And there’s so much to be grateful for. There’s SO, SO MUCH to be grateful for. And I am. I know in my heart that I am grateful.
But sometimes you need to just allow yourself to feel your feelings, amiright? Maybe all the sad-feels are stemming from the fact that the first year of Charlie-girl’s life was really, really hard. Maybe it’s because the older she gets, the more her developmental delays sting for me. Maybe it’s just normal Mom emo’s about my baby girl having a birthday and getting bigger (sniff). Or maybe it’s a combo of all of that.
At any rate, I thought I’d use Charlotte’s birthday as an opportunity to be brave and open the kimono with you, at least a little. I went dark on everyone awhile ago about what was going on with Charlie. And I didn’t really intend to do that — it wasn’t even a fully conscious decision I don’t think. Or maybe it was… my brain is one big, foggy mass of mush these days so there would be no way of knowing.
But the truth is, we got a test result back several months ago — right around when I stopped posting updates — and it was not what we’d hoped to hear. It had a lot of other questions attached to it as well, so between the unknowns and the shock and the need to process everything, I just couldn’t bring myself to talk about it. I just couldn’t. I didn’t want to talk about something that I still didn’t know anything about. I didn’t want to put a label on my perfect, pure, beautiful baby girl. I didn’t want people to be insensitive (not that it would ever be intentional, but still). I didn’t want people to look at her differently. It all made me feel so, so vulnerable. It still does.
Now we’re back to playing the waiting game. Charlotte had a skin biopsy taken back in January and the cells have been sent down to a research lab in San Diego for analysis. They are doing testing to confirm what they think might be causing Char’s developmental delays. So we wait. We wait and wait and wait. Seems like all we’ve been doing this past year is waiting.
And the weirdest part about this is that I feel like I don’t even know what to hope for any more. I don’t want her to have this thing they think she has (not ready to say what it is – sorry. The time will come…), but I DO desperately want an answer. I definitely do NOT want this to end up just being a giant question mark that they can’t figure out. If you can give something a name, you’re able then to look at it in the eyes, accept it for what it is, get right, get positive, and move forward. You’re able to let go and let God. You can try to treat something that has a name. You can potentially prevent the re-occurrence of something that has a name. You can mentally and emotionally wrap your head and your heart around it. A confirmed diagnosis may be scary. But no diagnosis accompanied by persistent developmental delays and health problems — that’s scarier.
So that’s where we’re at. Still not sure, still waiting, still just praying praying praying.
On the brighter side of things, sweet Charlie girl is making progress, slowly but surely. One of her major obstacles is having very low muscle tone, which makes it difficult for her to do things that most infants are doing within their first several months of life — sitting up by themselves, holding their neck up, rolling, crawling, etc. Char hasn’t hit any of those milestones yet. But, her trunk and neck strength is improving all the time, she has rolled on her own several times now, she can now grab her little toes, she has started doing a little bit of babbling, her grasp has gotten strong and active, and she is tracking and engaging with toys and objects. We take her to physical therapy and occupational therapy once per week each, and we have an in-house development specialist that comes to the house once per week to work with Charlie as well. She has been seizure-free since around September or October, and she is nearly weaned off of all her meds now.
Most importantly, Charlie girl has always always been responsive and engaged. She makes eye contact and laughs and smiles and interacts — she totally engages, which has been a very tender blessing through all of this, and probably the thing that has fueled my hope the most. You guys, this baby girl is the brightest light. She just glows, seriously. Every single one of her therapists has commented on it. Her occupational therapist said yesterday ‘Ya know, I love all the kids I work with, but there is something about Charlotte – she’s just got this brightness about her. She just glows! I’ve never seen anything like it. There’s something special about this one.’ Yeah try hearing that about your baby and not dissolving into a giant puddle of crocodile mama tears. I sobbed all over myself and our therapist felt 1% awkward about it I think – NBD. #haha
Here’s the other weird part you guys: I know what God is capable of (answer: anything and everything). I know that if it is His will for this baby girl to be healed, all He’d have to do is say the word and it would be done. I know that miracles are not a thing of the past and that there is place for them, big and small, in our present day.
I also know He has a plan for this little angel’s life. That’s the part I don’t know though. I don’t know what His plan is for her. I don’t know if it’s His plan to heal her. I know that there’s a very real and high possibility that my sweet angel baby girl was the kind of valiant spirit that just didn’t need to be tested in this life. That’s something we believe in my faith — that we lived with God before we came to this Earth, and that our earthly life was a time to be tested, and ultimately to prepare to meet God and to live with him again (def feeling the testing part lately right? #woofkindof). We also believe though that some spirits were so valiant in their pre-mortal life that they didn’t need to be tested. Their valiance was such that they already proved themselves. Their purpose in coming to Earth was to receive a physical body, and perhaps to fulfill other important missions (like helping their parents become the people they need to become, in our case for example), but not necessarily to be tested themselves. We believe that special-needs children are in fact the choicest of all choice spirits — the most valiant, righteous, admirable, beautiful and precious souls of them all. And if we were so privileged to have one of those little spirits in our home – what an honor that would be. How blessed would we be? How could I wish for it to be anything else, if that were the case?
That’s how I know it will all be ok. Whatever the answer ends up being. It will be OK. I know this. And this is always the place I get to. It doesn’t mean I don’t have moments like the ones at the beginning of this post – where I’m sad about all of this. Where what I’m really, really hoping and praying for more than anything is the miracle — the miracle of healing, of having her life be what I, in my finite and limited vision, had envisioned it being. BUT, maybe it will be a different kind of miracle. The miracle of having this extraordinary spirit in our family, and the miracles that will happen in all of us as a result of it.
Blah! Enough with the heavy and the churchy. Forgive me for all of that. But thank you for letting me get all my feels out. There’s the update. That’s what’s going on. So many of you have asked and cared, and it has broken my heart every single time in the best possible way. THANK YOU.
Please keep praying for her my friends. Please. And pray for her mama too :).
Happy Birthday to my sweet Charlie babe!
We love you more than we could ever, ever express.