Photos by MayLily Photography
To any sweet mama who may be reading this and is concerned about the development of her child: the sole purpose of this post is to let you know that YOU ARE NOT ALONE, and EVERYTHING IS GOING TO BE OK.
Please know that. I want so badly for you to know that. To know both those things.
I don’t know what phase you’re in — dealing with a nagging concern in the back of your mind that something might be wrong with your sweet babe (I hate the word ‘wrong’, btw), or in the thick of testing, or in the thick of waiting. You may be learning to live with a new diagnosis or still learning to live with an old one.
Whatever it is, it’s going to be ok. From one mama to another who has been in those phases and felt the feelings, I want to tell you that. And I want so badly for it to lift your heavy heart and replace your fears with faith and fill you with hope and assurance.
If you’re like us over here, you’re learning to juggle multiple appointments every week and keep things straight between what seems like every kind of doctor and every kind of therapist.
And some days you might feel like you have a decent handle on it. Other days you might feel like crumbling into a puddle of your own tears cuz it’s just so much.
I can only speak for my own feelings, but I remember that beginning phase being the hardest. I remember that fear of something being wrong and wanting so, so badly for it to be nothing. And at that juncture, it didn’t necessarily feel like it was going to be ok if it was something. Ya know?
But listen – that is why I’m writing this post. Because for us, it was something. It is something. And ya know what? We’re ok. Even though it is something, we’re ok. We really are you guys.
And you will be too. I promise.
Our situation was particularly distressing because after a complication free, completely normal pregnancy, Charlie’s health problems came out of nowhere when she was around 4 months old. Up until that point I thought I had a perfectly healthy baby girl. She’d passed all her prenatal tests. She’d passed all her post-delivery tests. Everything checked out. How could something be wrong now?
It was really, really hard and I was scared. I was. I knew in my core that even if something was wrong I’d be ok, but I wanted so badly for it to be nothing. A fluke. A weird thing she’d grow out of. I wanted that more than I had ever wanted anything. I felt desperate.
If you’re in this phase mama, my heart is with you. And my prayers are with you.
For me at that ^ point in the road, what I needed was to fuel my hope that maybe nothing was wrong. That’s what I needed at that time. And if you’re at this point, I say fuel that fire!! Cuz guess what? Sometimes that is how it goes down! Sometimes it really does end up being nothing! I’ve heard so many stories of kids growing out of things, or of solutions being found that made it all ok and put the child right back on track developmentally, as if nothing had ever been wrong. And if you’re still unsure of what you’re dealing with, I say believe in the possibility that it’s something they’ll grow out of! I say believe in miracles. I say hope for the absolute best.
But then just know that if it ends up being a different scenario, it’s ok. It will be ok. YOU will be ok.
You will find joy and beauty and peace in whatever it is. You can come to embrace it. You can come to feel that this is not a test for your life, but actually a beautiful, tender blessing, hand-picked for you and your special family — enabling you to see life with new, more grateful, more compassionate eyes.
You’ll find a way to navigate all of it and manage all of it and function in the midst of all of it. And you’ll find unique blessings that only could have come by being in that exact scenario.
AND – you can still ask and pray for miracles.
During the journey, be nice to yourselves mamas. Let yourself be sad when you need to be sad. Be patient with yourself as you maybe sometimes ungracefully (hand raised) try to juggle it all. I’m telling this to myself every bit as much as anyone else. I’m such a hot mess 90% of the time. And I need to be nice to myself about it. I’m doing the best I can. We’re all doing the best we can.
I hope you have an incredible support system to lean on through all of this. Charlotte’s disease (Congenital Disorder of Glycosylation, type 1p, or CDG-1p) is so incredibly rare, she is literally one of maybe 9 or 10 documented cases of it, ever. EVER. The doctors cannot/will not speak to prognosis. They will not speak to what we can expect for the future for her – at all. Will our daughter ever sit up on her own? Will she ever crawl? Will she ever talk, or walk? Will she be able to be potty trained or sit up in the bathtub unassisted or hold her own cup of water or feed herself food? We have no idea. They say that there’s just not enough data to go off of to make any predictions whatsoever. So we live in the unknown.
The plus side of this and the way we choose to look at it is like ‘well shoot – the sky’s the limit! If they can’t tell us what she will do then they can’t tell us what she won’t be able to do either!’
But needless to say, it can be a pretty lonely place to be. There’s no one to compare notes with. No one to troubleshoot symptoms or medications or behaviors with. It can feel very isolated at times.
Maybe that is why I feel so intensely that I don’t want YOU to ever feel isolated or alone. I really don’t. And if you do feel that way, I want you to know that I’m here.
Don’t get me wrong – I feel like I’m still navigating all of it myself. Of course. I still have heavy days and moments where, if I’m being totally honest with you, I wish it were all different. I have moments where I still want nothing more than for my baby girl to be healthy. Where I just want to see her do the things that other baby girls her age do.
I still don’t know what it all means for us, or what it’s all designed for, or what the bigger, more eternal plan is. I do know though that this is one special little lady we have in our house, and that her life was intended for really significant things. I know that. I feel that. And as her mama, I feel that it’s my life’s purpose and mission to try to figure out what her life’s mission is, and then be her voice for it.
The door is open over here mamas. If you ever need an ear to emote to or some reassurance, or if you have questions or you just need a friend who understands on some level what you’re going through, I’m here. Email me. I may not be able to respond immediately but I will respond. And if I don’t, so help me email me again PLEASE, cuz a non-response would never, ever, ever be intentional.
It’s all going to be ok. In fact, it’s going to be better than ok. It’s going to be just as it should be. It’s going to be God’s version of perfect, for you and for that sweet little babe that He trusted you enough to care for.
We may not always feel like it in the moment, but really and truly – we are the lucky ones. We have these perfect spirits in our charge, and the things we will learn and take away from them– the things our other children will learn from them — are singular, and priceless, and reserved for the lucky families who get to have these extraordinary spirits in our homes.
If that IS you or ends up being you, feel lucky. Feel so, so lucky. We are the lucky ones. We are the blessed ones.
If you need help finding your peace with any of this, please let me know. Please reach out. Please don’t suffer in silence. Please don’t allow yourself to feel isolated.
Everything is going to be ok. I promise.