A lot of people ask me how Evelyn is doing and I smile and nod and say “About the same.” Then they mention that she looks great, and I agree. Then we discuss the fact that I am glad she’s such a happy baby, before we move onto different topics.
This is true. She is about the same. She is happy. She does look great. None of these things are lies, but also, they are only the tip of the iceburg of truth that we’re living.
You see, Evelyn is about the same because her development has slowed significantly. She’s about the same, because she’s doing all the same things. Nothing is new. Nothing changes.
Or maybe that’s a lie. Because she can roll over now, so that’s new. And her tongue thrust finally eased, so that she can eat solid food. That’s new. But those are the only major milestones we’ve hit in the last four months and I’m left looking at my baby, wondering what exactly is going on inside her brain, with its strangely firing synapses.
Evelyn smiles at me. She giggles when I kiss her tummy or her neck. She likes to grab at my hair. She’s pretty much right on track for a three month old baby – except for the fact that she is eight months old now.
She still has seizures while she sleeps. She can’t control her hands. She arches her back and flings herself backwards with no warning. Her body can be a little bit spastic, in the politically correct useage of the word.
We still don’t know what is wrong. We’re in a holding pattern until she gets older and her team of medical professionals can start to pinpoint exactly which skills are missing and how. In ten days we see a new physiotherapist for the first time for a comprehensive assessment. In six weeks, we see her Paediatrician again. I expect he will notice immediately how Evelyn isn’t progressing.
We don’t see a neurologist again until she’s twelve months old – unless she magically learns to walk in the next four months. (OH HAHAHAHAHAAAAAAAAAAAAAA, I make myself laugh.)
So, we wait. I will watch my daughter trying to master the art of moving her body, and twist and turn, flinging herself backwards when she wants to reach forwards. I’ll watch her frustration, and kiss her hands, and massage her muscles. I’ll encourage her to learn to use her hands, and hopefully, we can find out what works for Evelyn.
It’s stifling, this inactivity. People want to know how she is, but how can I tell them she’s no different than she was three months ago? That when they tell me she looks good, what they really mean is that she doesn’t look odd. That she isn’t visibly disabled and therefore “it will all be okay”. How do I tell them that I think her vision is still strange, and that her depth perception is out, when they tell me “but look, she can see me moving”.
I can’t say any of this, not now, not yet.
We’re still waiting to see. Wait and see. Watch and wait.
These are my least favourite things to do.
Mine too. Watching and waiting – it’s no fun. Especially when you know in your mother gut that something is wrong.
Hurry up and wait. It sucks.
Thinking of you all
Xxxxxx
Can’t begin to imagine how hard it is for you & family to watch your precious little girl struggle & to not know why. The waiting must be so awful.
Thinking of you & your family
*hugs* lovely. Waiting is the pits. I wish that there was a way to speed up time so you could get your answers. I wonder if people think that she ‘looks good’ in that at least she doesn’t seem to be in pain.
(Hugs) lady! Sucky that you have to just wait…
love to you all.
Look at those cheeks!
*kisskisskisskisskiss*
oh, now my screen is all soggy…….
Wait and see is the hardest thing ever, and there’s just no way to speed things up.
Your daughter is beautiful Von. Purely gorgeous.
Love, strength and everything I have to you. xxx
How frustrating for you! I wih you could get the answers you need now! She is gorgeous though!
It sucks. It’s unfair. The waiting, the worrying. It must be so hard. I think of your family often and how Evelyn is doing.
Waiting really sucks. Sending big love.
Please let me know if you ever need me to look into my resources at the pediatric hospital where I work. You know I will gladly run by the doctors here anything you wish. Love to you and yours. Xoxoxox
My son is 17 years old, we knew from his birth he had a disability so with no map we kept on going hoping to make the right choices. He has Down Syndrome. Can’t say we always had it right or even tht we had the energy to do enough most of the time. He can’t read much, or spell and his writing is that of a four year old. I often haven’t a clue what he is saying and press him over me over till he says it right. He doesn’t know a five cent coin from a 50 dollar note. Some nights I go to sleep fretting over what he can’t do, despairing, some I go to sleep giggling at his loud singing or his teen grumpiness or his fierce pride in cooking some thing for his Dad. I get the kind but patronising fond looks and well meant enquiries. I bristle on a bad day but I take them for the kindness they are meant. Veronica you will have highs and lows, despair and ferocious love and pride. There is far more kindness in the world than there is meanness or hate. I would just advise you to go easy on yourself and do your best when you can for Evelyn. Never stop hoping for new breakthroughs but you know what, we don’t all develop at the same rate as a chart dictates, sometimes you have to accept stuff like this and sit tight for the roller caster ride that is parenthood. Big hug!
I am glad she is not regressing. That is very worrisome, though, that she is not making the hoped-for progress, and you really don’t know what is going on or what to expect next. It is hard to talk with other people or go anywhere as your child gets older… no one understands, no one wants to understand, and no one wants to help. It is very, very hard to have a child that is different. It affects everything.
I think we can love our children and accept them the way they are but still be able to say that. Anyway. I’m sending hugs as well, friend.
It took me a while for the full implications of this post to sink in. It sounds like a pretty crappy head space for you guys to be in. Not knowing and wondering and thinking the worst one day and the best the next. I wish I had wise words of advice or comfort for you, but I don’t, other than knowing that Evie has the best family she could have hoped for to care for her.
Big hugs…
Same thing happened with our girl, who turns out has a little extra genetic material. You know what though… right now you are waiting and someday she will be crawling then walking then talking, even if it takes a lot longer than expected. That will be the most joyous day! And you’re right, it’s hard when your kid looks “normal” to everyone else and you know something is different. Keep your chin up, you’re doing a good job 🙂
I can’t imagine how that must feel. Sending you well wishes from Pennsylvania.
This looks and sounds a bit like grief mingled with worry, on a slow burn. You can swear at me if you like, but I wanted to be a bit plain in my writing. Please know, though, that it isn’t easy to write words that are a bit challenging, instead of soothing.
Some of what you are railing against, I think, is what Evelyn isn’t. And yet you don’t know what that means, at this stage. So you keep casting forwards for an idea of what to expect, and then how to progress. There are two things worth trying to remember when you are feeling like that, impatient and frustrated, concerned and overwhelmed, and wanting answers. (Important Thing to Remember) 1: Having a child with no health concerns, isn’t a passport to the future with bells on. Remember this. We almost all as parents, act like it is sometimes. The children’s wards in every hospital have kids who’ve had a great start to life, and then had some pretty hefty health issues crop up. Sometimes life-changing, sometimes more.
(Important Thing to Remember) 2: Even if tomorrow you had a diagnosis that gave you answers as to the cause of Evelyn’s concerns, you would still have questions. There would still be many things yet to learn about how she is going to develop in time. I’m sure Elaine will echo, that having a name for and understanding of, a child’s particular set of physical condition/s, can leave you with a whole lot more questions, many of which only Evelyn has the answers to.
So, like the physio from a few posts ago, and like the people who tell you how good she looks, let yourself take that in. She’s doing her best. You’re doing your best, even though that feels fraught with uncertainty. Be as open as you can to people – that can have its own rewards, as your friends and acquaintances can tap into what you are really feeling. My prayers are with you and your little ones.
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