Unraveling

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I am unraveling. It seems like I am simultaneously standing in a hole and having dirt shoveled onto my head.  Everything is spiraling downward out of our control.  Out of my control. Out of anyone’s control.

First, Owen was born and they couldn’t tell us anything about his future – would he walk? Talk? Feed himself? Live with us when he’s 40? We drew up a Special Needs Trust.

“Wait until after the first year”, they said.  “You’ll have 90% of your questions answered.”  That first year came and went, and we knew he would walk one day, and we knew he would talk one day, and we knew there was a light in his eyes telling us he was going to be capable of living his own life. We allowed ourselves for the following eighteen months or so to dream of a future for him – a future for all of us without having to take care of our grown child forever.  Without Parker having to care for him after we’re gone. We enrolled him at a typical preschool. “I’ll see you at his college graduation”, his neurologist confidently told us.

And then we had the MRI come back this past late-November and were devastated by the news.  “Maybe he won’t be able to go to regular schools one day” they told us, but it seemed like something to worry about in the future. We only had to worry about how to get him to speak, what new therapists to bring him to, where to find a good neuropsychologist to assess his intellectual and cognitive capabilities, whether or not we should make the trek to Boston, to Calgary…

And then in early-December we spoke to a neuroscientist that is studying Owen’s condition and he told us that they have only found sixteen people in the world that have this. SIXTEEN. 16. The same number of people in Owen’s “grade” at preschool. It’s so rare, it doesn’t even have a name yet. There is no prognosis.

And then in mid-December, we were told he would likely need a full-time aide to continue at his private, typical preschool next year.

And then in late-December we realized that he probably had to go to the Special Needs Preschool next year.

And then in early-January we realized that we needed to hire a Special Needs Advocate. And we did.  And she was forthcoming, and she was helpful, and she was honest.  And she scared the shit out of us about the fight we had coming for him.  Another goddamn fight for him.

And then two weeks ago we realized that he needs help this year in his private, typical preschool.

And then this week we realized that he probably can’t continue this year in his private, typical preschool.

And then two days ago, I sat there and had to answer “no” to a physiatrist for almost every single question she asked about what Owen can and can’t do that he should be able to do during yet another evaluation. “Can he get himself dressed?” No. “Well what about his socks?” No. “Well what about taking off his shoes?” No. “Can he name a friend?” No. “Will he let you read him a book?” No. “Does he know his colors?” No. “Can he follow instructions with more than one step?” No. “Does he know how old he is?” No. “Does he know he’s a boy?” No. “Can he walk up and down the steps by himself?” No. No. No. No. No.

And then, and then, and then…

And then Scott broke my heart when he said out loud what I hadn’t been wanting to admit to myself – that we need to stop thinking of and treating Owen like the three year-old that he looks like on the outside, and start thinking of him and treating him like the eighteen month-old that he likely is on the inside.  That we need to start reconciling with ourselves that he will likely be in Special Needs schools and/or Special Education for the entirety of his education, and that he may well be living with us when he’s a grown man.

And then that made me feel sad, and scared, and lonely.  And stupid.  Stupid because I keep letting this happen.  I keep thinking that it can’t get any worse and that we’ve hit rockbottom. I keep thinking that there is no more bad news to be had, no more ways for my heart to be broken.

I keep thinking that I will find someone who understands how this feels.  How it feels to have all of the other parents at a birthday party staring at you and your child because he is hitting you or hitting another child or wandering off or can’t sit on a regular chair without falling off or why you’re talking to him like he’s a baby.  How it feels when you walk in and greet the birthday child and the first thing she says is “Mommy, don’t let Owen hit me.” How it feels when you try to explain “gentle” to him and you see his eyes looking right through you because he just doesn’t understand.  Maybe someone understands how it feels when you take your son to music class and he is the oldest one there but acts like the youngest. How those stares from the other mothers with typical kids feel. How it feels when as you walk out and try to make a lighthearted comment about needing a cup of tea when you go home, another mother turns to you and says, “Oh, so he isn’t always like that?” with relief in her voice. But he is.  He is and he’s mine and I get to spend all of my time fighting for him or making phone calls or drawing up paperwork or emailing doctors and advocates and the school district and the insurance company and having meetings and evaluations and seven therapies a week and then I get to go home with him in the afternoon and all he does is hit me and kick me and throw things at me because he doesn’t know any better.

And I love him. And I resent him. And then I feel shame. And then I feel guilt. And then I love him even more. And then I go check on him at night sleeping so peacefully and cry for him for all that he could have been and all that we could have been and now might never be.

And then, and then, and then…

Comments

  1. says

    Your post really hit home with me. While it sounds like our children’s issues are similar but different (my three year old has been diagnosed with developmental/language delays, SPD and “possibly on the autism spectrum”).

    When you wrote about taking your son to classes and having him be the oldest but acting like the youngest…that was me for the past two years until I just summer. I wanted so badly for my son to play soccer with the other adorable 2 year olds. But he didn’t get it. I’d leave soccer sweating from trying to “help” him go through the obstacle course and frustrated and depressed. I finally stopped signing up after one day when I actually felt mad at him for being so different and just not getting it. Talk about guilt. (Note: I wrote about this in my “the story” section on my blog if you’re interested. I used to post only about my issues with my son but have used up every “why” there is and now often draw random silly pictures, but I promise the stuff about him is there!)

    This summer, in a “Wiggles and Giggles” class, one of the other mothers and her son actually refused to ride the elevator with us at the rec center. It still breaks my heart.

    I’m so sorry you’re going through this. You’re not alone.

    Found you via Love that Max and I’m so glad I did. I’ll be back. Your writing is wonderful.

  2. says

    PS I’m still totally in denial, too. I often just tell people my son has a speech and language delay. He turned 3 1/2 this month and cannot dress or undress himself, tell you his name or hold up 3 fingers when asked how old he is. I thought I should warn you about that in case you go to my blog and feel like yelling at me “hey! you’re in denial!” 🙂

  3. says

    Hi, I ended up writing something completely different from what I set out to say. The other post (the imaginary one in my head that didn’t really happen) would likely have been much better than this one, but I thought you’d want to know that I’m now linking to this post from there. Maybe you’ll get a few extra readers. I hope so. Your writing is fabulous.

  4. nick jacks says

    I’m sure that hearing that you “expressed” the tumult you’re currently feeling/going through with inspirational passion and eloquence is about the last thing that really matters to you right now… but you certainly did. I don’t have the answer. I only know that time will pass, battles will be fought–some won, some lost–and you will emerge a stronger person, a better parent, a whole person. I know because I’ve been there and, for a time, did not fare so well. One little thing I’d like to pass on is the website: Cerebral Palsy Family Network. Just something for you to bookmark as a reference. It’s hosted by CP Family, but has a wealth of resources for any special needs family. Good luck. I’ll keep you in my thoughts and check back to see you you’re doing.

  5. aint3113 says

    Hello, I found you through the Love That Max link up and I was captivated. And then I wasn’t sure what to say, so I just kept your page up for a while. I’m still not fully sure what to say…but I do send hugs – of the stranger through the internet kind. And I want you to know that I’ve been there too. Afraid to hope, hoped, and then felt like I was duped. Now there is just this constant fear of hoping…or as I call it fear of the jinx. Anyway, your journey and thoughts felt very familiar. Not the same. But, you’re not alone.

  6. says

    I do so understand how you feel! Our daughter’s neurosurgeon told us 12 years ago that he didn’t think there was a documented case of anyone else suffering what was most likely every complication known associated with brain surgery. I remember asking him if she would still be a 2 yr old at age 20. He didn’t know. At age 14 she is still a 2 yr old.

  7. Lauren says

    I just randomly found your blog and this entry really hit home for me. I am a mother of 3 kids under the age of 4, and my middle child has a genetic condition that has left him unable to walk, talk, or eat (like your son, it’s a rare condition that only 3 people in the world have been diagnosed with–it doesn’t even have a name). I have spent the morning reading your entries and I can’t express how reassuring it is to know that someone out there has felt the same way. Despite all my awesome friends and family, no one understands how I can go from sad to mad to proud to happy in an instant. And while I love my friends who support me, I can’t help but find myself angry at them and their “perfect” children. Thank you for being honest with your feelings. I don’t know you, but at least I know that someone out there has the same feelings I do every single day.

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