Monday, September 12, 2011

Life....

Life is really crazy lately. I plan on doing a "Day in the Life of" post soon but honestly my day is so full that it is kinda scary for me to actually write out what our day is like! So I'm going to note a few things that are filling my time and mind lately just so I can keep a record of it.

This has been a hectic month for me. So many changes and so much on my mind. I spend my days so busy that at the end of the day I worry that I didn't hold Thea enough, that I scolded Jolee too many times, and that I didn't spend enough one on one time helping James learn some things. I struggle in my mind to find a balance for myself and each kid. I need to get on the treadmill and do my C25K, I need to make lunches, oh shoot, Jolee is waiting on the potty for help etc. etc. I manage to get it all done and sleep from 12am to 6am every night. Thank the Good Lord that Thea sleeps straight for those hours!

I struggle wondering how much of my day should I devote to working with James? I have 2 other children who want my attention too. I wonder how they'll fare in life if I am always so worried about making James function normally. I stress so much about that and wonder if receiving his diagnosis was not such a good thing for us. I mean, before we knew he needed help but there was never a clear cut reason why. Now there is and I feel that it is entirely my job to help him. I forget that for 6 hours a day at school, there are 3 or more people helping him....so when he comes home I am making him talk to me, look at me, asking questions...sometimes maybe I am too much for him...When I take a step back I think "Should I just let him be a kid? Let him be him?" I don't want to miss an opportunity to help him, yet I don't want to be overbearing so he cannot enjoy my time with him or his little life. AH! I wish there were answers!

And because Thea is such an angel baby I feel like I neglect her. She had a slight flattened spot on her head and I panicked that it was because I wasn't holding her enough...so I made Jarrod hold her for 2 hours while watching football! I am a mess. 3 kids is more work than I ever imagined.

I have been working on the treadmill and find that my mind is racing while I am there wishing I could be doing more things with the kids or around the house but knowing I need to lose some weight and have made this an additional priority. It gives me time to think...although I should not be stressing so much! I find myself contemplating being finished having children. Maybe 3 is enough? Maybe we cannot handle any more. Now that James will need additional help in life, are we really done? Ah, breathe.

I watch Thea's eye contact and remember how great James' eye contact was...Will I know this time too if she is ok? And why do I say that? Ok? James is ok!

Then I sit around and wish I could volunteer our family for a research study with a geneticist...It seems pretty clear cut to me although most doctors disagree with me....

I have MTHFR. I didn't know this with James....He is on the Autism scale.
I have MTHFR. I didn't know this with my second pregnancy. John Isaac. Baby Jack passed away at 18 weeks.
I have MTHFR. I didn't know this with my third pregnancy. Baby Hope. Baby Hope passed away at 10 weeks.
I have MTHFR. I knew this with my fourth pregnancy and took extra medication. Jolee Ruth was born healty.
I have MTHFR. I knew this with my fifth pregnancy and took extra medication. Thea Hope was born healthy, and so far, is meeting her milestones normally.

Do YOU see a pattern? Why don't the Dr's? Why is it so hard to see that this might not be coincidence?

I cannot process folate at all. I need it broken down. Folate aids in brain development. Is it really that difficult or costly to figure this out.

I see a pattern and wish that highly educated Dr's would spend some time figuring it out. I spend my time looking things up so I can help my child, and maybe another out there......

But then again, I don't want to be the spokesperson for MTHFR. I don't want to be the spokesperson for Autism or Autism Spectrum Disorders. I just want to be a good Mom. I just want to relax.....I just want another cup of coffee to do it all.

Tuesday, September 6, 2011

First day of Kindergarten

Today was the first day of Kindergarten. Here I sit, waiting to pick up the bravest soul I have ever met. This morning I left our house with a very excited 5 year old. About 45 minutes later I came home with a humble heart. I have never in my life been as brave as my own child. In his short 5 years he has already surpassed his Mama in the courage department. I wonder how much more he will accomplish in his life that I'd never had the courage to do. I wonder how much easier life would be for him if only he were like the other kids. I drove him wishing that the only thing he had to worry about was remembering his lunchbox. I drove home hearing the words he repeated over and over...."I'm gonna miss you Mom."

My heart ripped in two when I saw him wandering the classroom glancing back with his tiny bottom lip quivering, "I'm gonna miss you Mom". And I walked out. I had to. I'll always have to let him find HIS way....I know this. When we recently received James' autism/PDD-NOS diagnosis I convinced myself that we would never use it as a crutch or let ourselves feel sorry for James or our family...and yet today I found myself wishing it away. I was set on embracing it and allowing it in, because afterall, it is a part of James...it is a TINY part, but it's there.

While the other children had just as many jitters and were shy and clinging to Mommies, my Jamesie had a ton more to contend with. He couldn't go into the gym to line up with the other students because it was just too much....noise, smells, sights, sensory overload....I wish I could tell his tiny little mind to calm down and not worry about everything around him. But I can't...it is something that in the next few years, he will learn. He will learn to cope and tell his own mind to calm down...right now that is what Mommy does...

He smiled and said hi to his old preschool teacher as we passed her in the hall. He smiled as we went into his new class...He is so ready. He put his things where they belonged and gave me our usual "kiss, hug, and high five Mom"...We did that twice, just because we can ;) Then his lip started to quiver and he got quiet. He is never quiet..

He slowly walked away knowing I had to go. He didn't want me to leave him there but he knew I had to. Never once did he ask me to stay. Never once did he ask to leave with me, but I knew he'd jump in my arms if I offered him the chance....he knew what was happening and where he had to be. So he said "I'm gonna miss you Mom", to which I replied "I'm gonna miss you too Buddy, but I'll be right back."

And then I walked out...and then hurriedly got out of there. I couldn't fight back the tears as I reached the sidewalk...then I sobbed, all the way to the car, to Jarrod's work, on the phone with my Mom, and until I reached home. The only reason I am not sobbing now is because it took 3 hours for the redness to leave my face and in 3 hours I will be with my boy. I could never show him my tears...he wouldn't just say "It's ok Mom." He would need to know why I was crying. And I can't lie to him....

I'm crying because I want it to be easier for him...I don't want him to worry about things. I don't want things to overwhelm him, I don't want it to be hard....but it has to be.

Not just for him, but for all of us. Life isn't easy...sometimes we go it alone. We fail, and we fail often. We are scared, and we are scared often...of losing someone, of failing, of the dark, of monsters, of being left out...but the truth is life is hard sometimes...and it's lonely at times...but without knowing those feelings and experiencing adversity, we wouldn't see how fun life can be. We need to appreciate the calm...the times when we are not worrying, the times when we are just at home eating chicken nuggets and playing with our farm toys...the times when we are reading to our kids when they are in the bathtub, or cuddling them at night after "just one more story." We have to miss people sometimes, so when we see them, our hugs are tighter and mean so much more.

My James is a brave kid...He walked away with his mind going crazy with new things and just said "I'm gonna miss you Mom".....In that tiny moment in my life, he became my hero. He became someone to look up to. He became, for me, the picture of courage...I look up to someone I have to look down to see....That moment in my life, makes any struggle or tear worth it.

"If there is no struggle, there is no progress." Frederick Douglass

EDIT: I thought I should add that my boy had an amazing day. He and the teacher both gave me 2 thumbs up for a great day. I asked him ow his day was and he said  "I like Kindergarten Mom." I asked if his teacher was nice and he said "Yes Mom, Mrs. Corrigan is nice and I'm nice too.".....and then I relaxed, for the first time in like, ever....my kiddo will make it in this world...even when it's hard, even when some might think it impossible....He WILL far exceed any success I can even imagine. And he will always be my little Hero.