Enjoying our journey.......each step of the way

Our little lion

Showing how a lion walks

My 3 monsters, I love them so much!

Sometimes this boy gives me a different perspective on life............

I remember sitting in my college classes, hearing about SPED (special education) and IEP's (individualized education plans), and different needs based upon different kids. I remember thinking at different times in my life that I was thankful that I didn't need to worry too much about that.......it may sound wrong, but it's enough to worry about taking care of all the other things going on in life.

I'm sitting here today waiting for my SPED meeting for Zachary that will take place tomorrow. We will "be discussing his IEP" for school. He was evaluated last week by a team of people at school, and tomorrow I will get the "results" of that evaluation. I'm waivering on wanting him to qualify, b/c it's what is good for him, and not thinking he should b/c he's not "that bad" compared to others. I'm nervous, I'm a little worried that there will be judgement. I know they aren't supposed to, but you wonder if someone along the way will think about what he should be doing, how I could have done something better/different. I wonder if they will think he is behind, b/c he is. He doesn't even begin to hit those milestones in the same way as his siblings, his cousins, his peers. It makes me nervous and cautious--and I find myself hiding behind my happy smile. Of course, I get that happy smile from him, b/c he doesn't know he's behind, he doesn't care he's not within the spectrum of apporpriate behavior. He smiles through it all, trailing about 5 steps behind, but always trying, always wanting to catch up, always expressing his desire to do.it.myelf! He keeps me in a good place about his delays. I find myself always struggling, b/c truthfully I am really happy he is walking, talking, singing, etc. I know there are so many out there that might never walk, they won't be functioning members of our society. I don't have that. My son will do all of that, and again I repeat I am happy beyond belief that we don't have to go there. However, I struggle with the fact that he is delayed. People try so hard to make it ok, their kind comments of "it's ok" mean well, but don't really make him stronger. They try to justify it by his prematurity. Yes, his prematurity doesn't help, but he shouldn't be this behind b/c he was ONLY 9 weeks early, not 16, and he should be approaching caught up.

I hope he is able to go to school and get what he needs through therapists, and teachers, and speech, and peer models, and so much more. I don't want to lose my time with him at all, but he needs this, for him.

I am also waiting for a call from Children's Mercy to schedule yet another surgery for my little man. Saturday night he displayed signs of a hernia, something we've suspected for awhile. Saturday night it became worse, and was really hurting him. It is a fairly minor procedure, an outpatient surgery, but a surgery nonetheless. He will have to be sedated, again. He will have to visit Children's Mercy, again. He will get one more thing added to his list, again. As I was filling out paperwork for his preschool, it is funny how they give you a teeny, tiny little line that says, condition at birth ___________, medical conditions ___________, any surgeries _______. Should I just type up a brief rundown of all of his "stuff" and attach to any and all future documents? He's going to apply for college and have to fill all this out. It's crazy! So, one more thing to add to his list. He was sedated for his MRI for his possible tethered spine, it was fine. He was sedated for his 4 hour hypospadius repair and urethra reconstruction, and he was fine. He was sedated for his tongue tie clipping, super minor thing, and he was fine. This will be just the same, right? Calvin has had a minor little procedure, too, in the last 2.3 years. Add to that our emotional roller coaster with Walt, and any other stuff, and let's just say I am tapped out emotionally. I'm done. I am so ready for normal.....but what is that anyway?

It's just one more minor thing, and we shall continue to enjoy our journey through IEP meetings, and surgeries, and paperwork, and the love and laughter that fill our days.