Moments in the Life of a Special needs Mom

Today was a roller coaster. I went way up only to come crashing down.

For the first time a physical therapist from Kids On The Move came to our home to work with Isaac. 

He told some good and bad news: He will be coming to our home once a month from now on.

This is good news because that means Isaac is doing well, which he said. Isaac is even sitting up like a pro. However, it is bad news because we only get to see him once a month and because we have to see him at all. 

He taught me four different things I could do with Isaac to help:

1   *Don’t use the Boppy pillow to help him sit up anymore. Work with him on sitting alone with toys.

2    *  Have him sit on my knees and tilt him side to side, then let him use his abs to clench back to position.

3      *Go from sitting to kneeling and back again with the help of a couch cushion.

)      *Rolling from back to tummy

    *Don't use bouncer much

I had to call Rachael because I was ecstatic. I am getting help for my son! Useful help! I can help him! I have even more hope! We rejoiced together.

Then I went to put Isaac to sleep. It had been two hours since his last feeding, so I thought I would feed him before he went down. That means more nap time, right?

Then it happened.

He began to do small little convulsion-like movements while falling asleep. He has done this twice before while falling asleep while nursing. Before, however, it was more like twitches and I just figured it was because he was falling asleep. Jeremy does the same thing. It has worried me, though. This time was different and I tried not to panic. 

After he was asleep I got online. Suddenly my feelings of knowing what I’m doing, success, hope, and all that just deflated. No, they popped.  After looking a few things up and reading a bit I looked up a pediatric neurologist under my insurance provider and wrote down the number. 

I kept telling myself it was okay. I’m okay. Then I just cried a lot. I thought, “But, this isn’t supposed to happen. Rachael hasn’t gone through this. (Maybe a little with her son) That means it’s not supposed to happen. No one has paved the way. I don’t know about this. I don’t know where to turn.”

Then I began to think again on the financial side of it all. Will we make it? Will Jeremy be able to finish school if this is something that needs immediate action?

Of course I’m praying through all of this. Now I’m taking it one step at a time. Looking at possibilities. Trusting in the Lord with all my heart and leaning not to my own understanding (which is very little). I wonder what life, and Fragile X, has in store for us next.