Moments in the Life of a Special needs Mom

Early Intervention came today. We have a new person coming. Her name is Erin. Lauren from Early Head Start came later. I was informed that EI will now be coming two times a month for thirty minutes. That  means Isaac needs more help. That also means we are getting him the help he needs to further succeed.

I took for granted to milestones Amelia hit. They just came naturally. I have to fight to get and literally teach Isaac every new thing lately. However, it is really neat to see when things start to come together and watch him do things for himself after being taught over and over. Things that come naturally to children his age are something we all must work hard for and hope we can keep up.

They said that around eight months is when they usually start seeing delays. I have to admit that at times my hope seems very little.I've come upon other stories of children Isaac;s age doing well-right on track, but it doesn't stay that way. It was kind of a slap in the face to be honest.I brace myself for that.

Sometimes I get scared. It is said that if you are prepared you should not fear, but I don't know what to do to prepare except to pray my heart out every night and ask for help and a blessing for Isaac.

When I first found out that Isaac had Fragile X I knew everything to do. Everything was clear. I called KOTM among other places. It wasn't as easy as I thought. You have to fight and bug people to get help for your child. And then when you do get help it requires much more on your part than my naive mind first thought.

People don't just come to your house and work with your child every day and everything is fine. Of course not. They come and it is draining and then you expected to work with them every day. If I let a day go by without doing something to work with his development I feel I have failed. I feel guilty. I feel like a bad mother.

But I can only do so much. I have to live. I have to do the dishes and clean my house. I have another daughter that begs for my love and attention constantly. I have a husband. I have things I enjoy doing. I even have this blog I don't have time for. I can't spend every waking moment working on his development. Sometimes I go crazy constantly thinking of development, milestones, etc. etc.

I have a chart that helps me track how much time I spend with each child and their goals. At the end of the week I see that I don't spend as much time as I should. But I hate that I feel like I can't just enjoy time with my kids. I am constantly having to look at the clock to see how much time we spent doing this or that. And if we just have fun I feel like we need to be doing other things. It's a constant battle.

I am learning to balance things, stay sane, stay happy. I decided that Isaac is not my battle. He is my angel. Maybe it isn't even Fragile X. I think it is just this mental battle of imperfection we face very day of our lives. And the worry of what others may think or do about those imperfections.It's the battle of learning what truly matters most in this life and prioritizing our time accordingly. It is the battle to find joy in the journey of life. It isn't about getting to the end of the song. It is about enjoying every beat, harmonious chord, and favorite line along the way.

And so, I will enjoy the smiles, how everyone loves him, how those smiles make others smile, the fact that I have two wonderful angels in my home, the fact that I am being molded and perfected in this life, and holding that sleeping baby in my arms only to hear him laugh in his sleep one more time before bed.