Emotions

Being a mom of a child with special needs is the most rewarding job I've ever done.  While it is so tough for me to watch him struggle to do basic things that I take for granted, it is also so exciting and full filling to watch him make progress with those same things.  I have never been so excited to get a high five from anyone in my life.

But while it is the most rewarding job I've ever done, it is also by far the hardest thing I've ever done.  It is exhausting both mentally and physically.  My child cannot walk, so he has to be lifted and carried from place to place.  This is taking a huge toll on my body.  In the past 6 years, it feels like I have aged twice that amount.  But I wouldn't trade having that sweet lovable boy for anything in the world.

This has been an emotional roller coaster for me.  While some parents of children with special needs know from day one that their child will never be typical, I did not.  I knew he was born early and he was small, but I thought with time he would grow and catch up with other kids his age.  And even for probably 2 years after he was born, I still felt that was a possibility.  But all of his disabilities began coming one at a time.  First it was the feeding, then the trach.  Next came his vision impairment and that was followed by his hearing impairment.  I finally began to realize that John will never be like other typical kids his age.  He is always going to struggle.  And with each diagnosis came a new set of tears.  I cried when we found out he was going to need a trach.  I cried when I found out his vision wasn't normal and I cried when I found out he would need hearing aids.  For those of you who have never seen me cry, it isn't pretty.  I'm not the type of person who can hide the tears.  As soon as I even think about crying, it is visible on my face. So you can imagine what I looked like to all of those doctors who had to give us the news.  If they would all just ignore me and leave me alone, the crying would stop sooner, but as soon as someone acknowledges in any way that I am crying, it just makes it worse.

When John was having private physical therapy twice a week, I had a lot of hope that he was going to keep getting stronger and would some day be able to do many of the things I hoped for him to do.  When the therapist talked to me and told me that therapy twice a week wasn't producing the results it should and that he should only come once a week, I cried.  Right in a waiting room full of people, I cried.  It just felt like she no longer had hope for him and that was one thing I couldn't afford to lose.  Then his OT told me that she thought he needed a break all together.  She had been working for 2 years on the same things and he just wasn't getting it.  She didn't think he was at a developmental age where he could understand what to do.  Again, it felt like she had lost hope and again I cried.  It became a joke that someone isn't an official doctor or caregiver of John until they have seen me cry.

I haven't had one of those emotional days in a while.  Things have been good and since John has been in school all day, he has made lots of progress.  I even have gotten him back into private OT and PT, which he will start this coming Monday.  But today, I had one of those days.

We had his annual ARD scheduled for today.  I know a lot of parents that dread these meetings because they can be long and drawn out.  For me it has never been something I have dreaded.  They have usually been easy and straight forward and I'm always pleased with the reports I get from the teachers and support staff.  So I had no reason to think today would be any different.  Everything was going along smoothly, just like always, and then the teacher dropped something on me I wasn't expecting.  You see, John spends most of his day in the special education classroom.  This is where they are most equipped to meet his educational needs and where he does his best learning.  But last year and so far this year, he has been going into the regular classroom to be with other kids his age, mainly for the beginning of the day and calendar time.  This is a time when they do musical learning and we all know how much John loves music.  He also goes with the 1st grade class when they go to Art and Music 2 or 3 times a week.  But the teacher recommended that he no longer go to his 1st grade class for the calendar time in the morning.  He will continue to go to music and art with them and will also participate in class parties and special events with them.  But because he really is unable to participate with the rest of the class, she felt that time would be better spent in the special education classroom working on his goals.

I have done a pretty good job of putting up this facade that I am such a strong person.  But when someone sees me cry, it just lets them see that I am not near as strong as I appear to be, and I don't know how to deal with that.

But like I said, I would not trade my son or all of the ups and downs we have had for anything.  He shows me that it's okay to struggle, as long as you are persistent and keep trying.  And when he wraps his arms around my neck and squeezes tight, it makes me smile, even if there are tears falling.