The Big Picture

We have discovered an Apraxia Kids website as well as blogs and online groups for parents with children who have Apraxia.  One thing I have noticed is that a lot of parents on the website post that they are depressed and they sat together and cried when they were told their child had Apraxia.  The therapists all say the same thing--a child with Apraxia (with the proper therapies, treatments, etc.) could grow up to speak clearly and do things that are so hard for them to do right now as children OR they could grow up and still have issues.  It can go either way and they want parents to be aware of this.  I read the comments of parents who are just devastated that their child has been diagnosed with Apraxia and I understand. Your child has to work harder than other children and as a parent it is SO hard to watch your child struggle and get down themselves. 

Alex not only has Verbal and Limb Apraxia but he also has a rare bone disease called Osteochondromatosis.  He has had two surgeries and he sees a bone specialist on a regular basis.  He has a lot to deal with, and while he does have moments of frustration, he is very determined and one of the hardest workers I have ever known.  

I think about the parents on the websites who seem devastated that their child has this disability and I understand where they are coming from and how they feel.  While I do understand their concerns, I have learned that as parents our job is to love our children, encourage them and prepare them for adulthood.  They will not be children for long and will be adults for a much longer period of time. Our children do not have a terminal illness, they don't have a disability that will keep them from experiencing a full life, or going out on their own one day and making it in this big, cruel world we live in.  I look at Alex, I watch him struggle and it's hard, but I know in the big picture he is going to be just fine.  Yes, they have to work twice as hard as other children, but in the long run (the big picture) they will be better people because of this.  They will be more equipped to deal with life's slaps in the face and disappointment and nothing will keep them from doing anything they set their minds to.  One day Alex is going to do amazing things.  He has big dreams and I know he will work so hard to make those dreams reality and I will be there smiling proudly and encouraging him along.

Sweet Morsels of Life

By now everyone knows the story. We took Kaitlyn to the ER at Children's on Wednesday where she was given a breathing treatment and some steroids and we were sent home.  She was fine until the next morning so we took her back to the ER where she was admitted.  We were there for a very long 4 days.

BUT . . . while we were there in the wee early hours of Sunday morning, during the stress of it all and the pure exhaustion, I had a good laugh.  Kaitlyn's oxygen levels were low.  They kept giving her breathing treatments but they didn't seem to work so the nurse came in to get the oxygen all set up in case the doctor told them to give her oxygen. I was sitting in the chair holding Kaitlyn, who was sleeping.  The nurse turned on the oxygen and instead of just a steady little stream of oxygen she was met with a very hard force of air.  Her hair blew up really high and her cheeks were shaking form the force.  One of the loudest sounds I have ever heard suddenly boomed from the wall. You know the sound of the drill at the dentist office?  Well, this sounded just like that but about 1,000 times louder.  This, of course, caused Kaitlyn to jump and then scream in fear. Another nurse came running in and tried to help--so then there were two nurses with their hair flying up and their cheeks shaking from the force.  One nurse began to scream and the other started laughing.  It was the funniest thing. They couldn't get it turned off so they flagged down a male nurse who gave it a try.  They eventually came to the conclusion that it was broken and were happy when they discovered Kaitlyn wouldn't need the oxygen.

We were happy to get to come home Sunday afternoon and Kaitlyn seems to be feeling much better.  Every time I think of that morning around 3 a.m. with the two nurses fighting the oxygen I still laugh.  It was like watching a sitcom.  Even the most stressful times in our life have funny moments.  Sometimes you have to look for them and other times they just present themselves, but they are always there.  Here's to enjoying the sweet morsels of life!

Apraxia Is Just Another Way of Saying, "Super!"

"Young boys should never be sent to bed. They always wake up a day older." --J.M. Barrie

This quote is true for all children.  I love this quote.  I see it happening in my own house.  Alex no longer lets me hug him goodbye at school.  He is very independent. He's in 2nd grade now--It just isn't cool to be in 2nd grade and have your mom hug you goodbye before school.  And I'm okay with that because he still lets me hug and kiss him when we're at home.  He even crawls onto my lap from time to time. 

Alex was a very quiet baby.  He didn't babble until he was a toddler and he didn't talk until he was nearly 3.  We used some sign language to communicate with him.  After a few doctor's appointments he started going to the school for speech therapy and we had a therapist come to the house to work with him. Once school started we began to notice other things--little things at first, shaky hand when he was writing, forgetting things and repeating things to the point of driving us crazy, not being able to read or recall the sounds each letter makes.  We noticed the way his mouth moved when he spoke and smiled (like Sylvester Stallone). He started occupational therapy to help with all the things he was struggling with. We knew something was going on, but we just didn't know what. Last year when Alex started 1st grade there was a lot of frustration and tears as he struggled with reading, writing, spelling, and math. Once 2nd grade started a couple of weeks ago he seemed even more frustrated and overwhelmed, which wasn't encouraging because the school year had only just started! We had no idea what to do to help him or how he was thinking or what was going on.  

Then, last week, I met with one of his therapists who informed me that they had tested Alex and he has Verbal and Limb Apraxia. She told me about how the disability affects Alex's brain and body--how there is (like) a disconnection from his brain to his body.  He knows what he is trying to say or trying to do, he just can't seem to do it. How frustrating that would be for me as an adult--I can't imagine having to deal with that as a 7-year-old boy.  Yet, he does--every day.  A friend said, "Giving it a name doesn't change anything.  It's like saying you knew your child had trouble breathing even before they were diagnosed with Asthma."  And she is right. There was no choir music echoing from the sky as the name of Alex's disability was given to us.  Alex wasn't miraculously "cured" just because we had a name to go with the disability.  BUT--on the other hand, having learned about the disability, we now feel like we understand Alex a little better.  We know a little more how his brain is working and we are getting new information on how to work with him and the treatments to help him. It has all been very eye opening and just amplifies what we have said about Alex all along . . . 

He IS a true super hero.  I drop him and Logan off at school and as I watch them walk into the building I am sure I see a tiny glimpse of his invisible cape. J.M. Barrie was right--every morning Alex wakes up older, but I believe he also wakes up stronger.