I've held off with this post for a couple weeks because I wasn't quite sure what I wanted it to be. I do know that I do not want to appear dramatic or in despair. I am accutely aware that John and I are very, very fortunate and that many friends have bigger issues. But it is what is happening in our lives right now and I feel as though it is false to document only the lighthearted goings-on in our little world. Those are important and I love them, of course, but they are not the whole story and someday I want to look back and remember all the pieces of our history.
Anyway, I've mentioned Lizzy's developmental delays a couple times in passing, but in reality we've always been a bit concerned. Maybe more than "a bit". She has some obvious speech/language/gross motor delays and we had her evaluated by our state's early intervention program to see if she would qualify. She barely missed (still not sure if that is good or not).
Results in hand, we consulted our pediatrician who recommended we take her to see a pediatric neurologist. This happened two weeks ago and we were taken aback by his initial diagnosis. You see, I've always harbored the hope that Lizzy is just, well, Lizzy. She does things her own way at her own pace and that her pace is WAY behind her siblings. The neurologist feels there is something bigger going on, that her delays are not the result of: being a triplet, a preemie, a mellower personality, getting "lost" in a family of 4 kids. He feels there is something "biological" with her.
The result from our appointment is that she has an MRI and blood test for chromosomal disorders this Friday and I feel a little sick about it.
My feelings aren't because I care if Lizzy's "bar" may be set lower than her siblings (I don't care). It isn't that I won't go all crazy-mama-bear about getting her as much help as necessary (because I will). It isn't that we will most likely be in limbo for a few years until we know what really might be going on with her. It is that I am sad for her. No mom rejoices that her child may struggle with something they can not help having their entire life. There is enough junk we have to go through without any added help. Heartache.
But (and there is always a but), I have hope. Hope that nothing of consequence will show up on her MRI. Hope that there are no chromosomal disorders shown on her blood test. Hope that the scary words "autism spectrum disorder" will not be used in finality. Hope that she really is "just Lizzy" and will always do her own thing on her own time and all we need to do is get her the extra help she needs to set her bar a little higher.
I have this Hope because God created Lizzy beautifully in his image and especially for us. I have this Hope because I believe we are here for a purpose and not to just take up space. She is here and ours for a reason and it is for something wonderful.
The choir at our church did a rendition of the hymn "It is Well With My Soul" the Sunday after our neurology appointment and it is not only appropriate but it is my all-time favorite. I tried to find something on youtube to post, but all the renditions were stereotypically obnoxiously christian and were annoying to me. It doesn't matter, though, because it's really the first stanza that I love the most and aptly describes how I'm feeling:
When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
It is well.
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5 comments:
Hello friend, I came about your blog quite by accident, but couldn't help but reading this post. I am sorry about what's going on and hope that all will be well! My prayers will be with you!!!
Angela
prayers for miss lizzy + for you.
We'll be praying for you guys and Lizzy this week. Thanks for sharing.
Amazing perspective from an amazing mommy! God has given you His eyes for Lizzy and He has already written her story. I am thankful that my friend has the only HOPE that is real. -KJ
Sending prayers for you and your precious little girl. I can't imagine how long this wait will feel like. Hang in there.
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