My Manna

Read below story to see the significance of the above picture.

Notice anything about this starfish??? Read on...

I promise I will get around soon to telling you about Will's doctors appointments in Boston but right now I don't have the energy & I've been wanting to blog all afternoon about something that happened today. Does that mean I'm a blog addict when I think about my blog entries as things happen, when I think first of blogging an experience prior to thinking about calling my mom, my spouse, or a friend? Perhaps...

Most days are GREAT days. I have a blast with Will & LOVE being his mommy. Sometimes, although not very often, I have a "pit" day- a tough day. Sometimes, that is due to a difficult therapy session or a challenging doctor's appointment or something I read while researching Will's syndrome or perhaps something someone says to me in a certain grocery store. Most days, however, are really wonderful.

Today was another great day but I will admit that I've been thinking on some "pit" subjects lately. Fortunately, I haven't gone totally into the pit- just the edge as I mull over some things I learned last week in Boston. They are not all bad but they distract me from just enjoying Will and each day as I begin to fret and think about our future. But I'll tell you more about that in a minute.

One of my struggles for the last almost 14 months has been comparing Will to other babies. Have you ever overheard new moms talking? No doubt, if you listen for more than a few minutes, depending on the age of their babies, you might hear one boast about how early her baby slept through the night while another might talk about how quickly hers can nurse. Still another might mention how early hers spoke or walked, or sang their ABC's, or played piano, or read War and Peace in Russian. Nothing is wrong with any of these accomplishments & most certainly we should celebrate our children's & other kid's accomplishments. My problem is when I become focused on me instead of the kids & when I let anxiety & worry consume me. I've always been a very competitive person. That works to my advantage when I'm running a race but other than that, it's not a good thing. Before I ever had kids, I would compare my nephews' early accomplishments to friend's babies of the same age. It's sick, I know.

I knew long before I had a baby that I would need to be careful about letting my child develop at their own pace and not pressuring them. It's not about me! I admit that with Will this is a particular struggle as I want him so badly to remain in the "normal" range of development for every skill. So far, he has. I don't know why that even matters to me except that sometimes I struggle watching him become so frustrated when he knows he should be able to do something - he's mentally capable- but his body hasn't figured out how to adapt or compensate to do it differently - that's tough on me. I always get nervous when he is working on something - not because I don't think he can do it... I know he can... but because I don't know the how or the when. Of course, it makes the accomplishments that much sweeter and we certainly savor them I think because we know how hard Will works. I keep telling myself that he is never going to be hanging out with a group of guys in high school discussing who crawled or walked when. Moreover, no girl is going to quiz him on his childhood development skills while on a date. (If she does, that's weird.)

Every time I start to worry about the how & when, Will manages to accomplish that milestone and we move on to the next one - although not without great celebration, pictures, videoing, etc! Lately, I've been worrying about walking. He is still within the normal range but everyone predicts a different age. I've been told he would walk before 12 months & I've been told he'll be at least 2. I've been told that the "normal" range doesn't apply to Will - that really irks me for some reason. I want to hold him to a high standard. I want answers but the bottom line is, no one knows when Will will walk or how exactly he'll do it. He did walk behind a push toy with prosthetics on without my assistance last week for the first time! (He's walked behind toys for a while without zancos but never with them on & without my help.!) Yea! As I read that, I think, logically, why should I worry? I suppose it is my pride that keeps me anxious. I want to participate in the new mom "walking" conversations.

I also tend to perhaps be a bit short-sighted when it comes to Will. I have no idea if other parents live with fear for their children but I certainly struggle with it. I fear how Will will be treated by his peers, how he will accomplish certain tasks in school, how we will choose a school for him, how I will educate others, how I will hold back tears when he is upset, how we will continue to pay for medical care, how he will snowboard and fly fish, how he will drive, etc. If I remain short sighted and think only about the day or week ahead of us, I do much better. When we see doctors, however, we think big picture & long term. We talk a lot about Will's future, his prognosis, treatment and surgical options, etc. It's scary and it's very overwhelming. Often, it is discouraging as doctors can sometimes paint a bleak picture regarding all of the challenges he will face. (Hence, my "edge of the pit" consuming thoughts lately.) It is times like this when I must remind myself that so far, he has risen above every challenge he has been presented with. (& an extra dose of kissing & cuddling makes me feel better!)

This morning, I was "reading"(listening on my ipod while exercising) to the story of the Israelites exiting Egypt and slavery via the miracle of the parting of the Red Sea. After participating in an incredible miracle & being freed from slavery, they became hungry & whiny. God provided them with quail in great abundance. They soon complained about that too. So he provided them with manna from Heaven - something perfectly created to satisfy their hunger. The deal was they could only take enough each morning for that day. They would have to trust Him to provide for the next day and even the next year or longer. It hit me this morning that I have often criticized and judged the Israelites. How in the world could they complain after seeing miracles? Didn't they get how God was providing for their needs - how could they not see it?

I am just like the Israelites. God has provided for me and for Will. I have seen miracles & I live with a miracle. I just put my miracle to sleep a little while ago. This afternoon, after putting him down for a nap, I listened as I walked down the hall as he spoke to his "doggie"- clearly saying the word "doggie." He shouldn't be able to do that with his tongue. That's a miracle. He smiles and laughs- miracles. He is alive- miracle! He is crawling, fast - miracle. He feeds himself- even the smallest of foods- miracle! He has not stopped breathing while asleep even though his airway is narrow- miracle! He pulls up & walks behind toys & cruises- miracles! But, like the Israelites, I forget to spend time reflecting on all of these miracles everyday and instead I get caught up in fear for the future. God always provides me with manna every day - I need to accept that day's manna & stop trying to collect enough to get me through unforeseen challenges in the future.

Today's manna: (as if figuring out that above wasn't enough- He gave me extra!) I do not like Oprah. I saw a show several months ago that angered me & I have committed to not watching it. I broke that commitment on accident today. I was putting on Will's zancos this afternoon and just happened to turn on the tv for a second to see what was on Oprah - weird. Suddenly, there was our friend, Cody McCaslin! Cody has feet differences and was a patient champion with Will at the marathon last year. (See picture above of Will (age 3 months) & Cody (age 5). Cody won a 5K at age 4! Along with his parents, Cody was featured on Oprah today as a miracle kid. As he talked about how he loves to run and swim and showed off his various zancos, I was struck with tears and reminded that my precious Will will run & swim & walk & play.

Manna is yummy. Should you notice I'm forgetting to enjoy my day's provision of manna & becoming too fearful, please remind me to just eat my manna!

(ps- The starfish pictured above that Will is looking at... he has feet differences - I got very excited at the aquarium when I saw him! If you know me very well, I'm sure you can just picture it! Fun! :))