Friday, August 7, 2015

The Sibling

I've been reading a lot on the sibling of the special needs child. I think the sibling of the special needs child is often overlooked. And while I am ashamed to say it, I feel like I myself have done this.

We get so wrapped up, so into everything we do to keep our special needs kiddo alive, that we just assume the sibling is okay. They may be like my youngest, they have their moments of breakdowns, but you figure they will grow out of it. And then, in the blink of an eye they are 7, and that breakdown they are having is not appropriate for a 7 year old. In fact, much of their behavior is quite scary.

Here comes the guilt. Mommy guilt. I ignored her, I abandoned her.

I began noticing that Aria's behavior became much worse in the last two years. Ever since I began to travel to take care of Alexandra. The intense thumb sucking at all hours of the day. the breakdowns, the hitting, spitting. I almost decided to not travel anymore. Then that created more guilt that I wasn't doing enough to ensure Alexandra's survival. Fact of the matter is, Alexandra is not going to get any better, she is only going to get worse. My need to care for Alexandra is only going to grow. How can I choose between my children? Aria throws guilt and hate at me constantly. She says I love Alexandra more than her. Of course none of this is true. None of it at all. But one child does require more attention than the other. It is just the way it is.

So now, after realizing that Aria has become prone to panic attacks, OCD moments, and possibly, SPD, she will be evaluated for these behaviors in early September. I feel like the most gigantic failure in the history of failures.

I have failed my oldest child because I can't find anyone who will give her a transplant. I am exhausted from doing the daily coordination of everything that comes with managing her, working part time, and going to school that I can't help her do her homework because I just don't have the mental ability to sit and fight with her on it because the fight of just keeping her alive is overwhelming.

I have failed my youngest child by not attempting to get her help earlier. I repeatedly have asked her to be quiet or give me a minute before attending to her needs because I was busy attending to her sisters needs. I have constantly asked her to take a backseat to her sister. I have consciously, and unconsciously put her behind her sister. Why? Because no matter what I figured she would be at my side. And because I put every single ounce of my sanity, my strength, my will, my time, my own soul into Alexandra because nothing matters unless she lives. Without Alexandra, I am nothing. Every bit of strength and fortitude comes from this battle with Heterotaxy/CHD/Abernethy. All the knowledge, every breath I take is made for Alexandra. Its almost as if she stops breathing, I stop breathing. I gave her my own will to live because nothing else matters except for her survival.

So I had nothing left to give Aria. Its the truth. I had nothing left to give. I didn't hold her like I held Alexandra. I didn't talk and spend time with Aria. Because I had to quickly get Aria taken care of so that I could attend to Alexandra's care because it was much more time consuming.

So whats the moral of the story? What piece of advice can I give you? Your child without special needs is actually more in need of you than the one with special needs. The special needs child is resilient, strong, they have been through tremendous things that give them their fortitude. The sibling has been left behind. The sibling has been pushed aside. And while you may think you are doing a fine job of ensuring the non special needs child is getting their needs met, you aren't. I guarantee you aren't. I know its daunting. I know its sad. But it is the reality of the world we live in. Its the reality of the family with a child with special needs. But what occurs is, the entire family becomes special needs. And that's what we ignore.

Be aware of your other children without special needs. Don't let yourself become like me and awake up one day and realize this is what is happening. Get help. Don't be afraid of the stigma. You are living an extraordinary life. This is not normal. Don't try and make it normal. You will kill yourself trying to make it be normal. I know, because I've tried.

As always friends, take care of you.


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