Read with caution

I feel that I am not able to express how badly things are going. I haven’t written in a while because I am too tired and because I don’t want people to feel sorry for me or avoid me on the street or think that I am “problem mom.” Once you become “problem mom” no one expects you to show up for parties, have a nice house, get invited to things or wear anything but dirty sweatpants and messy hair. And while all of those things are true for me, I don’t want to admit it.

Why so glum,? You ask. Because I cannot help Max. Max’s pain, anxiety and depression are running so deep that the entire family is now suffering. He has not snapped out of it, still feels terrible pain and trauma from what was supposed to be a minor surgery to help him walk, and I cannot help him. He has no energy, no motivation and no hope. I have lost what used to be an endless supply of patience. I want to scream and yell and throw things. And while generally I don’t, I cannot say that I have been entirely successful.  There was that embarrassing incident in the kitchen yesterday…

I have reached that point where being the mom of a disabled child is too much to bear. I have been there before and I know that at some point I will return to normal but it’s important to write about it because no one understands. No one, except those of you who might read this blog because you too are the mom of a child with a disability, cannot begin to imagine how terrible it can sometimes be. We are not miserable all of the time, we are thankful for our children and love them and still have happy times, but the truth, that no one wants to hear, is that there are dark dark days when the rest of the world can inhabit the parental earth and we cannot.

My child has no joy in his heart. He has no hope for the future, he has pain and frustration and fear.  He doesn’t have a playful spirit or carefree moments of imaginary play, freedom to run or jump or even the energy to climb up the steps.  Dramatic, much? Maybe, but you just don’t understand. A child without childhood is more tragic than a child who cannot walk, talk or read. When all he couldn’t do was walk, he was happy.  But now, when walking might even be in the cards for him sometime soon, he doesn’t even care.  The ugly side of his “pretty” disability is that he is fragile and emotionally unstable.  Apparently, you don’t get to have a damaged brain that keeps itself neat and tidy.

He cries and wails at the unfairness of his life and has spent the better part of 3rd grade in the nurse’s office.  He has had a few good weeks here and there and somehow manages to learn the material and keep up, but he has not had a genuine smile on his face for months.

I am angry that having CP wasn’t enough of a cross for him to bear. Didn’t he struggle enough already?  He was born too early, weighed too little, didn’t breath enough.  He was tight and rigid and couldn’t chew or swallow. He was sick and stopped breathing in his sleep.  His ears hurt and his nose ran and he throat would nearly close up.  He couldn’t eat solid foods and couldn’t drink from a cup. He couldn’t roll over and couldn’t babble.  The only thing he could do was smile.  He could smile bigger than the sun and his light was so bright that I actually had to turn away from him sometimes.  He brought joy to others, attracted people to him and the world became a better place because he was in it.  People wanted to photograph him, document him, hug him, shower him with gifts. Love poured into him from everywhere. He was happy.

And now, he is not. I wish I could take back every therapy session or every attempt at helping him walk.  I wish we never did this stupid surgery and left him alone the way he was.  I bargained away the present for the hope of avoiding a wheelchair in the future.  By making him think he wasn’t ok, we used up all of his light and now there is no more.

3 Responses so far.

  1. Jennifer says:

    Light WILL shine again. You are just in a tunnel that is longer than you thought it would be. And, it may be impossible to believe the light will shine again, because of where you are and because you don’t know how to make it so. You just need to know, with all the faith in the universe, that this was the right decision, that planning for the long term may mean suffering in the short term, and that you will again see the light in that sweet boy’s eyes again…you just have to know it to be so, however it happens. Always here for you…

  2. Adrienne says:

    I feel your pain. It’s the worst burden to make these massive decisions for our kids. We don’t have medical degrees, just the crash course our kids have provided. Every doctor, therapist and guru thinks they know best — and maybe some do. But it’s our job to pick who does what to our kid. And it sucks. I often think that avoiding surgery is best — at least that way I didn’t make a choice that
    made things get worse. But that path doesn’t allow for any of the big gains we all want. Max is strong. You are strong. You’ll get through this and marvel at your resilience once you’re comfortably on the other side of this experience. And then you’ll travel. Start planning your first trip — it’s a great motivator.

  3. Anonymous says:

    I am so sorry that you and Max are at these crossroads. That’s what it is. A crossroads that you will eventually travel through. Yes, it sucks to have to see our kids suffer while others “frolic around enjoying everything” life has to offer. It’s not fair. It’s not easy. It’s not fun. If you need an ear to listen, you are welcome to give me a call anytime. (256-568-3700) Heck, my Sterling would even be HAPPY to talk to your Max. Sterling LOVES talking and never meets a stranger. Take care and hang in there!

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