Wednesday, January 11, 2012

Thank You from the Bottom of...

Oh, how I hate posting without a picture to share! It was either that or not post today, and I really wanted to share some thoughts with you.

The meeting with Levi's therapists & case manager wasn't as hard as I expected it to be. I think part of that was knowing that all of you who read my thoughts here were concerned about it. Many of you asked how I was feeling on the days leading up to it and have showed interest and support since I wrote about how heavily it was weighing on my heart. That gives me so much strength, and I thank you...from the bottom of my heart. (Which reminds me of a card I once saw a card that said, "Thank you from the bottom of my butt...well it's much bigger than my heart!" Ha!)

This meeting was focused more on goals. "This goal was met... This goal was not met... This is a new goal we are setting..." It was much easier than hearing where he is at compared to a typically developing child. We are looking in to applying for more therapy hours for him. I have mixed emotions about that. It can be tedious making sure he has his meds at the right times, scheduling therapy appointments, planning all the extra doctor appointments and check-ups, and working with him on a day-to-day basis reinforcing what the therapists are doing. So adding more is an overwhelming thought, but so is the fact that he is 19 months and not even really crawling. I had hoped he'd be walking by age 2, but that is not looking like a possibility at this point.

I think a big part of what makes those meetings so emotional for me is the blame I put on myself. I know it isn't really logical, but imagine sitting around a table with your child's teachers. Each of them keep telling you that your child is behind the others and needs to learn how to do this, and this, and this. They are all doing their part, and you child still hasn't met the goals. Your child isn't lazy and is so young, she needs you to help her reach those goals.

I am at home with Levi most of the time, so I feel like I am the one responsible for challenging him and helping him. Yet I still have to accept his limitations. It's like I can't win either way. That is why those meetings are so hard for me. The stuff I can usually push to the back of my mind is right there in plain sight, and I feel like the evaluation is about me. When he was little, I kept hearing how great he was doing & how much I work with him...not happening so much any more.

Switching gears... I am so excited to share that a young adult with Ds in our area got her driver's permit last week! How exciting is that?!

Kelle Hampton, who writes my favorite blog, had a magnificent post yesterday that really touched me. She included many photos of people with Down syndrome fulfilling their dreams. Click here to see it. The post is part of a fundraiser for the National Down Syndrome Society in honor of her daughter's birthday. Last year she set a goal to raise $15,000 and ended up raising $100,000!!!! (Remember the video she made that Levi & I were in?) I can't wait to see what she does this year. Why hasn't she been on Good Morning America or something like that?

Have a fantastic rest of the week. We may get some snow tomorrow. I am almost done with my laundry room makeover. My next Tuesday Tidbit will blow the others out of the water. It will include my first step-by-step tutorial! Stay tuned!

And thanks for taking the time to stop by. I mean that...from the bottom of my butt!

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It would make my day!


michelle said...

April honey, stop beating yourself up! He will do everything that a typical child does...just will take him longer to get there. You know that. And appealing for more therapy is SO worth it. I know it adds a lot to your plate, but it will pay off. Which you also know. : )
Read my fb post. So timely!

Karrie said...

April, I can relate with you the feelings you are having. I struggle, myself, with whether I am doing enough for both of my girls. I feel like if I work more with Madi, Taylor is neglected. And vice versa.

Just know that you are doing an awesome job!!!! You are a great mommy to your kiddos!

Hang in there!!! (((HUGS)))

Jenny said...

April, I love you. And Levi is blessed to have you as a Mom. Those evaluations suck, I hate them too. Levi and you are both working as hard as you can, never doubt that and don't beat yourself up over it.
And I love hearing that some one with Ds got their drivers permit!!! That's really exciting!!!!

Leah said...

Eli, Emma, and I were studying about faith in James 1:6-8 today. I think you just have to remember to always do your best and God will take care of the rest. Don't forget 1 Peter 5:7 as well, "...casting all your care upon Him, for He cares for you." I'm sure it must be hard, but God will make sure that Levi does everything he is supposed to do, on his own time. All children do. He is precious, but I know that you know that!

Laura said...

Wish I could give you a hug! I find it complicated and tiring trying to keep up with all of Ben's stuff whether it be therapies, doctor visits, medications. It is so overwhelming. Some days I just don't do Ben's exercises with him and then I feel so guilty. But the more I think about it, we shouldn't feel guilty. We are all working hard so hard and life has to be lived and we have to be good moms for our other kids too. This is quite a journey we are on, isn't it? I am very happy to be on it with you!

April Vernon said...

Yes indeed, Laura. So glad to be along for the ride with you! The support and experiences we share give me strength on the cruddy days, and I am so glad to have you cheering along with us on the good days, too!

Thanks to ALL OF YOU for your comments. It means a lot.