Moms know things. Moms especially know things about their children.
I’ve known for a long, long time that something was different about my youngest.
She cried a lot as a newborn. When I say she cried a lot…it becomes hard to write about. I cannot explain the way her body would tighten, stiffen, and become totally ridged. I cannot effectively explain the screams…and the hours they would last. At first we thought, colic…turns out that doctors these days don’t believe in colic. They think it is really acid reflux. She was given medication and we hoped for the best. It didn’t work. At all.
It has been heartbreaking to watch her at times as she cries knowing that I can’t make it better…and wondering why she is so upset in the first place. We ended up putting her in her own room to sleep just because she was keeping the other girls awake so often. We tried sleeping on wedges, warm baths, rocking, changing foods and formulas…and still…something is different.
It’s taken me a long time to write about this for several reasons.
First, I’m an ‘avoider’. If I can avoid something then it isn’t really happening. By avoiding certain things I can put off bad news, delay disappointment, heartbreak, or just not deal with it. Writing about something on a blog, sharing it with the world (where it will be critiqued and judged), that’s about as far from avoiding it as possible.
Secondly, how can I share all or any of this? How can I find the time to write? How can I summarize this all into something that doesn’t come out sounding like all I do is complain about my amazing blessings?
And finally, I do realize exactly how blessed I am. What would give me the right to complain about ANYTHING when I personally know people whose children are dying of cancer, or who were only alive for mere moments after birth?
But, as I seem to be slowly approaching the end of my frayed rope, I feel the need to vent and share.
It’s been overwhelming. So, overwhelming that I cannot seem to find the words to explain what it’s like. What it’s like to wonder what is wrong with your child.
Why can’t I help her?
What did I do to cause this?
Am I just a bad parent?
Is this happening because my time, energy, and efforts are spread so very thin each day?
From the time my youngest was born anyone could pick her out of the group of triplets. She is without a doubt beautiful. Yes, I am her mother, but anyone else would agree! And her smile is breathtaking. Her laugh is absolutely mesmerizing. It totally consumes her tiny little body and I’ve yet to see anyone who is blessed enough to hear it not start laughing themselves.
People are drawn to her more than any other of my girls. They seem to want to hold her more, to touch her more. She is a bit smaller than everyone else and her features are quite dainty. She has red highlights in the ringlets in her hair, a tiny gap between her front teeth, huge brown eyes and a gorgeous heart shaped mouth.
Was abortion recommended? Was it suggested by more than one doctor or specialist? Were you shuffled between doctors and given almost no control or say in how your pregnancy and delivery(s) went? Were your children hooked up to wires and tubes as soon as they were delivered? Did they spend weeks in the neonatal intensive care unit? Did you finally get to take home your children only to be told that you cannot hold, touch, or over stimulate them? Did you have to be taught how to feed them, because the “normal” way might kill them? Did you try to explain these things to other people and have them get mad at you because you were being too protective? Have you dealt with 3 premature babies screaming night after night and day after day while your first born is all but forgotten? Have you changed 40 plus diapers a day that belonged to your own children? Have you brought home heart monitors and breathing monitors? Have you worried the electricity might go out and your children would not have the machines they need to survive?
I guess my point in this rant is that…it’s been so hard.
And it’s been especially hard with my youngest. I thought for a long time that she might be autistic. She would rock back and forth, zone out, and not make eye contact. This is where my little bit of education became a problem. I knew what certain symptoms could mean. She took quite a while to crawl and even longer to walk.
But that motherly instinct wouldn’t quiet down. Something is still off. I finally broke. My frizzled rope just gave way. I am tired of not being able to help her. Of not having any plan…of just waiting. And in the mean time, she is not getting the help she needs to thrive and grow.
Kyle and I have been looking for answers. We’ve talked to people, bought books, done research and finally I found something.
It was like the definitions of this disorder were describing my child. I am aware that the realization that your child might have a neurological disorder would upset some people, but all I’ve felt is relief.
We have now had our evaluation with an Occupational Therapist (OT). The OT (along with both of the other therapist and the pediatrician) believes that she does have SPD.
The OT was wonderful. She listened. She understood. She let me cry and gave me a tissue. Then, she gave me tools. She gave me a plan. She gave me hope.
That’s all I needed. Heck, we’ve already established that I’m one tough chick! I can handle almost anything. I just have a hard time remembering that when I get so tired, overwhelmed, and worried about my child who is obviously hurting in some way.
So, I have a plan. I will now stop wallowing in pity and put on my Big-Girl Panties. I have 4 more little ladies to teach how to do the same and the best way to do that, is by example.