thoughts...

A friend sent me a great link yesterday (http://withoutwax.tv/- scroll down about 3 entries to "Rocked to the Core" to watch the video ) about a family from the band Selah who lost their baby girl a few weeks ago just after birth. My heart breaks for that mother who is grieving a baby today. While our stories have very different endings & I recognize that our emotions & our grieving is very different, we do have some similarities. I know what it is to beg God for the life of your baby & suddenly realize that syndromes suddenly don't seem so bad when you just want them to live. I know what it is to feel a deep "soul loneliness" when none of your friends is experiencing anything remotely similar to you in their pregnancies or mothering. I know what it is to feel like everything you know has been stripped away from you- when you are just barely hanging on every day. I know what it is to have numerous tests & ultrasounds & cling to the hope that maybe at the next one they'll realize they are wrong. I know what it is to struggle to find the balance between accepting what doctors tell you is reality & yet have hope & a belief in a God who still works miracles - & somehow trusting him when He says no.
I have known pain & anger & anguish over the last year both with losing our first baby & worrying about Will. I am so grateful for Will's life- there was a time when we didn't know if he could survive more than 6 weeks after birth. I am so grateful for his every smile- there was a time when we didn't know if he would ever be able to smile. I don't take things for granted anymore like fingers or the ability to move a wrist. No skill seems insignificant or like something I should just expect my baby to do. I cheer & make phone calls every time Will masters something new (we have to work hard for it!) I am grateful for a God who I can trust because I know He is good- even when I don't understand His ways & even when I have to redefine what I thought "trust & good" entailed. I love Job 42:2-3 & Jeremiah 33:3 because they proclaim such hope- I am confident that there are things too mighty & too wonderful & too good for me to even understand in Will's future. Again, I get so excited realizing I get a front row seat to see what happens! So many people have already told us how knowing Will has changed them or their prayer lives or their relationship with their children & he's only 8 months old!
I must claim that because some days are really hard. I try not to focus on the hard days & I try not to share too much about them because I don't ever want to seem ungrateful nor do I want people to somehow think Will is anything less than wonderful & perfect for us. But I was reminded recently that maybe it's okay to sometimes be vulnerable. Thank you to those of you who so often have sent an email or a card or just called to let us know you love us & you recognize that sometimes this is really hard. It's hard to have to do so much therapy with your baby- it's exhausting, actually. He does 3 different types. When we are not in therapy, we are working on things we learned in therapy. I'm determined to prove that Will can accomplish everything he is supposed to but that means lots of extra work. For example, sitting is not easy when you are missing some of your feet- you don't have that extra counterweight to help you sit. So we worked really hard on sitting. And sometimes it's frustrating because as soon as he masters one skill, we begin working on another. Sometimes I just want a break from working on stuff. I learned recently that in California, they offer respite care in the home for parents of special needs kids- most often the mom sleeps. That makes me feel better as my mom often visits & I typically nap a lot while she is here! My own form of respite care, I suppose.
Recently, I saw some kids make fun of Will for the first time. That was really hard on me & I just can't stop thinking about it. It's one of the things I've dreaded for 10 months. I didn't even know how to respond to them. This is all so new to me & I'm still trying to best figure out how to respond to people. I struggle with learning how to educate people about Will while still respecting him & his body. For instance, sometimes people will come up to him & grab his hands or feet & almost examine or study them- that's not okay with me because I feel that they should maybe ask first & it wouldn't be okay for me to grab their bodies & study them so it's not okay to do that to Will. But, I also don't want people (especially children) to be afraid of Will's body - I want them to hold his hands when they play & know that he is just another kid. So it is such a fine line & it's a constant struggle for me in figuring out how to handle such situations. The last two times I've been to the grocery store, I've had to deal with rude people while trapped in the checkout line. Most recently at HEB, a woman made some very offensive suggestions about my pregnancy (not to mention personal). I was so taken aback by her audacity that I naturally didn't think of any good responses until I was crying as I drove home. (fyi- about 1 in every couple of thousand babies are born with limb differences... 1 in 1.5 million have all 4 limbs affected- it's "spontaneous" meaning it is not caused by genetics or by anything the parents did or didn't do - it just happens.) Sorry to ramble... but some days are really hard. A mother should be able to just go to the grocery store & show off her cute baby (which normally I do - he loves smiling at every person that walks by & showing them his ball) without having to deal with rude comments or stares or questions. Sometimes I just want to be another normal mommy at the store... without having to spend time answering questions & "educating" others on special needs children. I've read lots of parenting books but none of them tell me how to deal with such unique situations. I'd write the book but I don't have it figured out (nor do I have any time... who knew how completely consuming this whole mothering thing would be?!?!) While my heart breaks realizing that someday Will will notice all of this, I also look forward to his responses. He has such a good sense of humor already that I feel like he will know just what to say. I'm pretty sure he'll come up with some funny & creative answers when people say inappropriate things. But I hate that he will have to deal with it at all.
Despite hard conversations & exhausting therapies, something occurred to me recently. I realized that if Will's hand & feet differences are a part of what will make him the man God intended for him to be... I wouldn't change it. I of course want to spare him pain & heart break & challenges but I have to believe that God is good & that He intended Will to look like he does because He has a greater purpose- something too wonderful for me to know right now (Job 42)- & so I wouldn't change Will's body.
My friend also reminded me yesterday that God doesn't do plan Bs... He only has plan A. What a great reminder. We claim that God intended Will exactly as He made him. He doesn't make mistakes & he doesn't do plan Bs. So, I am reminded, yet again, that Will is fearfully & wonderfully made.
Thanks for walking beside us - it's nice to have the company!