Friday, July 8, 2011

Hard Moments

We didn't plan anything for AJ's birthday last week.  Mainly because it has been nothing short of insanity around here.  On a whim, I decided to take him for a birthday lunch at our favorite Latin-American restaurant.  Since it was a beautiful day, I asked to be seated on the patio.

It was the most depressing lunch I've ever experienced.  I went in with no expectations whatsoever, mind you.  We take AJ out to eat enough that he understands the concept and since the boy loves to eat-it is a win/win.  This was the first time I had taken him on my own, without Jeremy.  His presence was sorely missed.  Suddenly, I was whacked into reality land.  My child doesn't talk.

In fact, he didn't make a peep the entire hour we were there.  Our waitress was working way to hard to earn her tip and for some reason talked to AJ at a much louder decibel than she did to me.  He didn't respond.  "Here you go buddy," she said.  He stared off at God knows what and continued to methodically dip his chips in salsa. "Are you hungry?"  "Do you want a spoon?"  "Be careful, its hot," she said.  Usually his lack of participation is deflected by the conversation between Jeremy and I and the server.  Because we are talking, the spotlight is directed away from AJ's inability to talk.  Don't misunderstand me, we certainly make him part of our conversations.

I asked him several times if his food was good.  "Is it good?  Mmmmmmmm."  "Do you want your juice?"  "Say, more please."  "Mommy loves you."  I felt so foolish. I felt like I was talking to myself. A train passed and I tried my hardest to get him to look.  Its way to far for him to focus and see, I thought.  He ignored me. I picked at my enchiladas and did my Mommy duty scrapping the rice on AJ's plate into the middle to help him get it on the spoon, instead of the patio.  A couple was seated on the patio and I felt the eyes of curiousity shifting to our table-a lot.  Just ask what the damn things are, would you?  I left a healthy tip (even though she annoyed me, AJ made a huge mess and I'm that person who tips heavily on behalf of my child) and we left.

I sat in the parking lot and bawled.  Perhaps I shouldn't have picked his birthday to make such a journey solo.  I really didn't think it was that big of a deal.  I cried until we returned home, when soon it was time to change and schlep out to his first hippotherapy riding session.  No time to dwell.

Lately, AJ's pool therapy sessions have been at times where the club's day campers are in the pool.  Clearly, I am used to a quiet house because 25-30 kids in a pool make me cringe and go into sensory overload.  But today, I could not stop staring at them.  Watching how the children interact with each other and were just able to move their bodies in ways I can only hope AJ will learn to.  How the lifeguard blew her whistle and all of the children stopped (ok, paused) and listened (listened like kids sorta listen).  They were independent, as independent as grade-schoolers can be, and enjoying life.  AJ was enjoying every second of his pool time, but I know the reality of why he's really in the pool.  Today, I just couldn't turn reality off.

I've been hounded as to what we are doing for AJ's birthday, and to be honest, I'm sad about his birthday this year.  I'm not in a mood to put on a pretend face and have a huge shabang, only to hide my true heartache at such events.  I'm still debating on hosting a little shin-dig for his little friends, but I think that's all we'll do. Last year, I felt the need to press on with AJ's birthday despite Jer's brain issues.  Considering Jeremy doesn't remember any of his son's birthday party and all AJ cared about was the swings, I'm not sure it was worth it.

I am not sad that AJ turned 5.  I am so proud of my little man.  He's not a baby anymore and shows me more and more every day that he's turning into a little boy.  I am sad that he does not understand the concept of "Happy Birthday" being sung to him. I am sad that he doesn't understand what a birthday is-even the childlike concept of this is the day I get lots of presents and cake!  I am sad his hearing age is 7-8 months.  I am sad his language age is 6-8 months.  Months.  Not years.  Sad at how many words and sentences I speak every day and receive no response.  At all.  I am tired of hearing about all the things he has yet to do.  I am sad he does not know his colors, numbers.  I just read that most children at the age of 7 are reading chapter books.  Say what? He can't sign or say Mommy when he needs me.  I am all too often overwhelmed when he screeches or whines and I cannot decipher exactly what it is he wants.  I melt at the sight of AJ's smile when he sees his little buddy at summer chool and wish so very badly I could snap my fingers and provide siblings for him. So many things make me sad.

I remember sobbing, uncontrollably, to one of AJ's therapist's last year.  It was the first time I've ever lost it, in front of anyone other than my husband when talking about AJ. She had had the balls to speak the truth to me and I stifled my crying until three years of holding it in broke me and I sobbed aloud, "It wasn't supposed to be like this!!!"  The therapist cried with me.  I'm feeling that way again.  Surrounded by the normalcy of others and our grave differences is literally suffocating me.  Days have become unbelievably full of these hard moments.  And I'm not sure why.  I'm grieving.  This, a fact.  But why such a full-on sadness?  I feel like were stuck and things are never going to change or improve in regards to AJ's communication skills. Is it my fault?  What I am I not doing enough of?  I feel guilty for being tired and for getting angry that I'm doing all that I am supposed to and we're still not getting anywhere.  Isn't this my job as a mother?

Hard Moments Are Hard.


  1. I totaly underdstand why you were crying. As our kids with special needs hit different developmental stages, or are supposed to and don't we are once again faced with how far from normal our kids are. So your at what should be a new developmental milestone, he should be an active little boy now. He is not, he will never be, and its just plain hard.

    I adopted twice and chose to adopt kids who are deaf. I was ready for deafness and sign language. What I was not ready for was for my older son to have serious behavior issues from having been abused in his orphanage and all the fall out that this early trauma has caused him. I was not prepared for my second son to have serious brain damage that has caused him to have significant behavior issues and low IQ. I love my boys, but it just was not supposed to be this hard to have a family and be a Mom. What has helped me the most is finding a group of other Mom's who "get it". Those, in my case happen to be Mom's of kids with autism. but for you a group of Mom's who have kids with significant special needs of any kind will embrace you and understand you. Its so important you have the support of others on this journey of parenting a child with significant special needs. Hugs to you. Feel free to email me anytime.

  2. I truly don't know what to say other than you are an amazing person with a good heart. We don't know each other well but what I do know of you is you are a strong and caring person and you are a fierce mother who is doing everything she can for her beautiful child. You are in my heart, thoughts, and prayers. If I can do anything, you know how to reach me. Take care, Tina


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