Fall 2013

Fall 2013

Saturday, September 15, 2012

Four months

Four months ago today, we woke up anticipating our usual routine. I can tell you that NEVER, EVER did it cross my mind that by the end of that day, Maia would be fighting for her life. It has been a long four months, seems more like a lifetime. Two weeks in the ICU, six weeks in the hospital, home for a month, and another hospitalization. Five surgeries for our sweet girl. She has been through so much.

Honestly, it often feels like we have lost Maia and now have a different child.  Even the "shell" seems different. There are moments when I get just a milli-second glimpse of the "before" Maia, but it's gone so quickly that I wonder if it just my imagination. So... how is Miss Maia doing?

Physically, she continues to get stronger. She is capable of standing and taking steps independently. Just lacks the self-confidence to do so. If Maia thinks we are holding on to her, she's fine. The minute she realizes that she is on her own, she plops herself down - lol! She's crawling around the house more and more. "Mean mom" is working on helping Maia to learn to crawl up the stairs again. Oh... let me tell you how much she loves dislikes that. ;-) But, she's slowly figuring it out. Making some progress holding on to things for brief periods of time. Will hold on to a food item and bring it to her mouth (only problem is that she keeps putting the food in without taking time to chew). 

Cognitively, things are going much slower. Maia is definitely more alert than she was when she first came home. There is recognition for familiar faces and items. No verbal communication right now and actually, she was making more sounds earlier in her recovery than she is now. As I have shared before, I think that is one of the most difficult things for me. I miss hearing her sweet voice and even miss her crabby voice - lol!! There are times when she cries, but she's not always able to even give us any indication why she is crying. Yes, we are able to discern some of her cries, but there are some that just come out of nowhere. Depending on what's going on inside that beautiful head of hers, she may be very frustrated and scared about why she can't do the things she used to do.

On a positive note, Maia is nearly back to her pre-illness medication regimen. She's down to one seizure medication, instead of two. And we've seen nothing remotely concerning for seizure activity. Still taking melatonin to help with sleep at night, but that's a whole lot better than the anxiety and pain medications that she required when she came home from the hospital.

It's hard to think about how this has affected Matthew, too. Although in many ways, he doesn't seem that much different, Maia's illness has made an impact. As a mom, I struggle with some sense of guilt about the loss he's had over the past four months. Matthew, too, has had to endure more in his five years than some of us do over our whole lives. The world he was just starting to feel secure in was turned upside down. And he isn't able to just tell us what he thinks or how he feels. Some of those emotions come out in other ways.  It can be a challenge. But, there are also moments when Matthew touches my heart with things he says and does.

Now... it feels like we are starting to develop a bit of a new "normal." That word feels wrong somehow, because how can this be considered normal? But there isn't a whole lot of choice in the matter. For as much as I would like to just crawl in bed and pull the covers over my head some days, that won't do much good. So, all of us get up, get dressed, go about our day and try to figure this different life out. We learn how to navigate in situations that we never anticipated. Some days, we do well. Others? Well... we make it through.

And I truly believe that the reason we are able to keep putting one foot in front of the other and can start to smile again at times is because God has sustained us over the past four months. Thankful that He is constant even when life as we know it changes in ways we didn't anticipate and that He promises to walk each step of the journey with us.


  1. Maia does seem to be improving in many ways, and though the improvement is slow, it is hard earned. Being "mean" Mom is part of the reality of your days I am sure. It is difficult to gauge what she can do but resists, from what she just cannot yet do....but I am sure you just keep trying and so must she. Unfair but reality. I think I shed more tears over my failures than I did over my daughter's. Sometimes I just wanted so badly for her to be able to understand and do what she had done as a matter of course before her coma. We found we needed more patience than we ever had before, and that was something I had to work so hard at!

    You have all had lots of adjustments, and while you mourn the changes in your lives please also feel proud that you have all come so far. Even being able to acknowledge a new "normal" is huge. I continue to pray for all of you!

  2. Beautifully written! Praying for Maia and all of you. I fully understand the 'new normal' as we are right there as well. Some days are rough, but like you, we get through. God is good through every bit of it though. (((((HUGS))))) my friend!

  3. You are all warriors. You are never far from our thoughts and our hearts. Know that we (all 5!) pray for each one of you every - single - day. We WILL trust God. Erica


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