It's a shame...

Okay, I know I just posted about comments people make recently, but yesterday I was walking into Kroger with Brogan in the cart and Avery following behind me in her walker, and there was a woman who was waiting for us to go by so that she could get to her car, and she looked at Avery and - with a sympathetic sag of her shoulders and a tragic look on her face - said, "It's a shame she's handicapped." This has bothered me more than any other comment anyone has made. I lay awake thinking about it last night, and it still gives me a hollow burning feeling in my heart when I think about it. I've been trying so hard to not let it bother me, because I'm sure she thought she was being kind or something, but what right has she, or anyone else for that matter, to think that anything about my beautiful little girl is a shame? Why is it any more acceptable for her to say that to me than it would be for me to go up to someone and say "It's a shame your child is so ugly" or even, for that matter, "It's a shame your child is so short." Who's to say that being short is something to be ashamed of? It's not, and I certainly never want my child to feel ashamed of her physical abilities and limitations. Really, I don't understand what reaction she was expecting from me. I'm sure she didn't expect it to be hurtful, but did she really expect gratitude for her thoughtfulness or something? I don't understand what she was thinking. She was lucky I didn't slap her. As it was, I was so flabbergasted that I just stared at her open-mouthed for a moment, then looked at Avery who luckily didn't hear (did she think she wouldn't be able to understand???), then stared at the woman again, and after a second or two all I could think of to say was, "She's amazing."

Avery's birthday

Well, I am now the proud mother of a 3 year old!! We had the best day, Avery was so happy! I love her so much :) There are pictures on my other blog here.
During the past week or so I've obviously been reflecting a lot on Avery's birth and early days. She is such a miracle. I feel so incredibly blessed and privileged to have her in my life. I think that is something nobody but a parent of a special needs child can understand - the joy they bring. The rest of the world seems to assume that it's only hardship to care for a child with extra needs, but what they can't really know is that the joy they bring is a kind of joy that no other child could bring. No doubt about it, I love my son just as much as I love my daughter, but there's something about the fact that Avery's life itself is a miracle that just...I don't know, I don't have the words for how I feel. She is just so amazing. I am so unspeakably grateful to my Heavenly Father for trusting me enough to send her to me, and for loving me enough to bless my life with hers.

Flash back Friday: Shunt surgery

Tomorrow will be my baby's 3rd birthday! I can't believe how fast time is flying. My beautiful girl. This time 3 years ago I was a bag of nerves waiting for my little one to be born - frustrated that we were still having to wait because I knew there was nothing that could be done for her until she was born. I was scheduled to have a c-section on the morning of the 15th if the amnio showed that her lungs were mature. On this night 3 years ago my husband and I went out to celebrate Valentines day one day early because he was supposed to be at school on the actual night of valentines day. It was the first time really since Avery's diagnosis that I'd been able to really relax a little bit and enjoy spending some time with my husband. Then, that night at about 3:30am my water broke, and at about 5am or so I woke Gabe up and told him, and we called the doctor. I had a big valentines day breakfast planned for Gabe though, and that was my "gift" to him, so I didn't want to skip it, so I still made it for him!! Probably not the best idea, but I wasn't really having painful contractions, and I'd bought strawberries and stuff especially for it, so I insisted on doing it anyway!! :) My mother had flown in the day after we told her about Avery's diagnosis, so we woke her up too before breakfast, and then we set off. I've written about the day of Avery's birth before here, so I'm not really going to write much more about it now. I do want to talk a little bit about her shunt surgery because I haven't really talked much about that before.


Avery's surgery was scheduled for the morning of February 16th, when she was not quite 48 hours old. It was scary. I found that I had to not think about all the risks and dangers, because I would probably have lost my mind!
A year or so ago I wrote an article for Helium about preparing for Avery's surgery, so I'll just paste that in here and then post some photos too.

Babies are amazing.
My little girl underwent surgery when she was two days old. When I was 35 weeks pregnant with her she was diagnosed with congenital Hydrocephalus, with Dandy Walker variant, which meant fluid was unable to drain from the ventricles in her brain the way it should. So after planning for a natural birth, my baby had to be delivered by c-section, and then be prepared for a surgery which involved being put under general anesthetic, having a hole drilled into her skull through which a tube would be inserted through brain tissue until it reached her fluid-filled ventricles, and then having a tube pushed under her skin, down her neck, over her chest and into her abdomen, to drain the fluid. There is nothing minor about that kind of surgery, especially when it's to be performed on your own tiny newborn child. Yes, I was terrified by the risks that the surgery itself presented, but I knew that without it my little girl would have no chance at life.
As a parent of a baby who needs surgery, there is nothing easy about your new, terrifying situation. You are cruelly launched headfirst into one of those experiences you hear about, but never imagine for a moment that you'll experience first hand. In our case, we found out our daughter would need surgery two weeks before she was born. Honestly, in a lot of ways the hardest part was waiting for her to be born, because we knew she needed help and she couldn't get it until she was born. I felt so desperately helpless. In the ultrasounds, I could see how her sweet little enlarged head was under so much pressure that her brain tissue was squashed against her skull, and I couldn't help but think that she must be in pain. I felt so much relief when my water unexpectedly broke, because I knew it meant that my baby would be born that day, and that she would finally be able to get the help she so desperately needed.
My daughter was officially diagnosed with hydrocephalus on February 6th, she was born on February 14th, and had surgery on the 16th, but to this day I find it hard to believe that it was only ten days of waiting! It truly was the longest ten days of my life. Every second seemed to last forever, because I knew that every second presented an even higher risk of irreversible damage - a higher risk that my little girl would never be given the chance to lead a normal life.
How did I deal with the situation thrust upon me? I have always been a religious person, but I can honestly say that I probably spent more time praying in those ten long days than I'd ever prayed before. My husband and I leaned on each other for support - some days he'd be the strong one, and other days I would be stronger. I studied and researched and absorbed every piece of information I could lay my eyes on about hydrocephalus and the surgery she would be receiving. After my daughter was finally born, there was relief and hope, even though her future was still uncertain. She was here, and something could finally be done. I spent every moment possible sitting next to her in the NICU in my wheelchair, in awe of her beauty and the sweet sweet spirit that she already possessed. I sat there touching her, stroking her soft, sweet skin, breathing her in, and feeling pain and sorrow for every heel prick, every IV, and every monitor hooked up to her. The day of her surgery we went with her for as far as they would let us, reluctantly kissed her goodbye, and went back upstairs where we tried not to watch the clock as we waited and prayed and hoped, and tried to occupy and distract ourselves. Finally we got word that she was out of surgery, and all had gone well. We were able to go see her back up in the NICU where she was sleeping, but still able to breathe on her own. She coped so well with the surgery, and recovered so quickly that it was only eight days later that we were finally able to bring our baby home.
I am so filled with gratitude when I think that even 50 years ago my daughter may not have even survived, let alone grown to be the sweet, happy, bright little 18 month old that she is today.

Gabe giving her one last kiss before they took her down to surgery. We went with her as far as they would let us go, and then came the waiting which seemed eternal!

Here she is sedated after surgery. Notice that her gauze dressings are heart-shaped :) She was born on valentine's day, so they gave her valentine's dressing :) I thought that was cute.

A tired looking Daddy.

After the dressings were taken off. She was a little jaundiced so they put her under the bili lights. I love how warm and cozy she looks here :)



This big shunt and incision looked so scary and huge at the time. It is so amazing how well babies cope with surgery. On of the other scary things was that because she had to lie on the same side of her head for so long after she had her shunt placed, and because so much fluid was draining from her head, she got a dent on the other side of her head that was almost an inch deep. It did finally even out, but we did ask her nurses and dictirs about it because it was so worrying to see and feel.

Walking at the store

So, recently, Avery has been using her walker whenever we go out shopping. I've been trying to make sure that I give her the opportunity to be independent wherever we are, and she's been doing a great job! Of course, it's meant that everything takes a lot longer to do, but that's just fine with me because it means that my little girl is starting to realise that she can walk by herself wherever we are. A couple of weeks ago I had a few things I needed to get, so the plan was to go to target, then walmart, and then joanns. At Target I gave Avery the option of using either her walker or her crutches, and she chose her walker. (Which is good actually, because she can walk a lot faster and longer with her walker - crutches are a lot wobblier and more tiring) She walker the whole time we were in Target (including to and from the van!), so when we got to Walmart, I thought she must be tired, so I gave her the choice of using her walker or sitting in the cart, and to my surprise and delight she chose the walker again!! And she did great!!! So we didn't make it to Joanns, because the first 2 stores took about 2 hours, but I was so proud of her!
Of course, we get a lot more comments and looks now that Avery's walking whenever we go to a store. Most of it is lovely! It's interesting to see how different people react to her. I love when random people seem to be amazed by her. In the parking lot at walmart, for example, one woman stopped in her tracks to exclaim "You are so amazing!! Look at you!!" which I thought was sweet. Sometimes people will stop and tell us how they or someone they know used to have braces or a walker just like hers. Some people will make a comment about how pretty her hair is, or what pretty eyes she has, or something like that, which, again, I love, because of course she's beautiful! Sometimes though people don't really know what to say or do. We were at Kroger the other day, and there was a little boy there with his mother, and the first time we crossed paths the little boy asked his mother if Avery had hurt herself and that was why she needed a walker. I don't have a problem with questions like these, especially from children, but his mother ignored him. I gave her the benefit of the doubt and thought that maybe she hadn't heard him, but we crossed paths two or three more times, and each time the little boy asked her why Avery needed a walker, and each time he was completely ignored.
How would you react to something like that? On one hand, I can understand her hesitancy to say anything in case she offended us. I still remember when I was about 15 I was on a bus and there was a little boy on the bus with his mother, and to this day I still don't know what his medical condition was, but he obviously had something. I didn't stare at him, but I did steal a few glances wondering what had caused the noticable deformity, and I remember feeling so sad because I just worried so much that he'd had to deal with the cruelty of children. Now I look back and feel sad for his mother, because she probably had to deal with those curious glances everyday, having everybody notice what was "wrong" with her son without seeing what was wonderful about him. But I think it's a tough thing to deal with to, because what should people say? I know that for me, I would have liked it if that mother at the store would have talked to me when her son asked her about Avery, or done anything other than ignore the question. It is not offensive to me if someone asks me about her. I will happily take any opportunity to brag about her, so please, just ask me! Maybe she was embarassed by her son's question, but ignoring my child and pretending she's not there is hurtful, and certainly not the way to teach your child to be embracing and inclusive. I only hope that she maybe spoke to him about Avery later on when they got home and talked about why some people need help walking.
I don't know. I keep on trying to imagine what I would have done had the situation been reversed. It's hard to know because my experience with Avery makes it easier to react to other exceptional children, but I suppose it would be difficult to know if you'd never had any personal experience with one of these amazing children. What comments and reactions have been particularly irksome/hurtful to you?

Today

I've been meaning to take my camera to Avery's weekly PT session so that I can get some photos of what she does there, and I finally remembered to take it this morning! But I only remembered I had it AFTER she'd finished doing stretches, and so I took a couple of pictures, and then promptly forgot I had it again until it was time to go home! Oh well, I tried.
So here are some pictures of Avery trying to stand up with her crutches all by herself.





Avery's PT's name is Lisa, and we just love her so much! She's been working with Avery since she was about 5 or 6 months old, back when she was getting PT through Early Intervention, and then when Lisa left to work for Carilion, we followed her there because we just loved her so much! She does such a fantastic job of pushing Avery and getting so much great work out of her, and yet Avery just adores her, so it's absolutely perfect! For a while after Lisa moved to Carilion, we were getting PT through carilion as well as CRD (early intervention), and the "replacement" PT assigned to us through CRD just didn't have "it", whatever "it" is, and the weekly PT sessions with her were not happy times for Avery. She just cried and cried, and got angry, and the PT was pushing her and trying to make her work, but because she was so unhappy she didn't get nearly as much done, and it left me wanting to slap the PT. So we weren't sad to leave her behind. And it made us even more grateful for Lisa, who knows how to make Avery work hard while still keeping her happy. It makes physical therapy not only happier but also so much more productive.
In the pictures you can see she's wearing her theratogs over the top of her jeans. We just do that for PT - when she goes to school I put them on underneath her clothes. They go on first, even before her underwear - that way she can still use the potty without having to take them off.
We've been worrying about her recently. She has been making so much progress, and I am constantly amazed by her, but I just worry about her developing hips and joints because while she is always progressing in what she's able to do, her muscle tightness and range of motion is getting progressively worse. That can't be good. Every time we've seen her physiatrist over the past year, she's been walking better and better, but having to work harder and harder for it. We've been wondering whether we should just talk to her doctor again about going back onto valium or something at a higher dose, even though it affected her sweet disposition, so that she can get mobile on her feet once and for all before this muscle tightness does more damage to her poor little hips. We already know that her posture and gait will probably never be quite "normal", but I worry that there may be more that we could be doing to prevent further damage. *sigh* Wouldn't it be nice if we could see into the future just enough to know whether all the choices we're making are the absolute best?