Rudolph

rudolph

Yes, the red-nosed reindeer. It’s the most wonderful time of the year, and we’ve been enjoying all the old Christmas classics my husband and I grew up with. We especially like the original Rudolph, the story of the misfit reindeer who befriends a misfit elf and a bunch of misfit toys and ends up saving Christmas for everyone. It is a beloved classic, but especially so because it fits our special needs life so well.

The story of Rudolph is one we live daily as parents of special needs children (or as people with special needs). It is not our child’s fault that he or she is different – it’s not like anyone would want to be blind or disabled or not feel pain or have a shiny red nose. And yet, the other reindeer won’t let our children join in any reindeer games (like Monopoly!). Sometimes, instead of prejudicial reindeer, it’s the other parents who give dirty looks to our disabled children, or the schools that will not honor IEPs, or the discriminatory Santas that won’t let special needs kids on their laps, or the million other injustices that happen every day in this special needs life.

Rudolph’s story gives us hope. His disability turned out to be the very reason he was able to save Christmas. He did not discriminate against Herbie or the misfit toys. In fact, he helped them overcome their own limitations and reach their full potential. It turns out that we, as parents, have a little Rudolph in us too. We are guiding our children through life, helping them overcome obstacles, fiercely advocating for them, being their first and best champions. And someday, just maybe, our children might go down in history, too (like Washington!), by using their limitations as strengths and giving us a new perspective. I know Gracie will. She is going to change the world with her shiny red light of love.

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Rocks

10411253_10203355980729422_2263236789892611962_nI read an article on CNN today about five peoples’ experience in this special needs world. Although Gracie is different than all those other kids, there were things in each person’s interview that resonated with me. One of the things that clicked with me most, though, was the person who talked about the stress that having a special needs kid placed on his marriage.

Chad and I love each other very much, but we have had some very rocky moments. Truth be told, we would have had rocky moments regardless of whether we had a special needs kid, but there is extra stress that comes with the financial worries, school worries, worries about our child’s future, and the worrisome fear that our child won’t have a future. It’s extra hard because we are going through this together – when our little sweet daughter is in the hospital with a scary life-threatening infection, we are both devastated, and neither of us wants to burden the other by unloading all our fears and woes. When I look at Chad during these dark times and see my own sadness etched in his face, I can’t confess my fears to him. He is my best friend, but I can’t bring my bestie down.

And then, there are the fights about inequities in the marriage. I am the one who goes to all the doctors’ appointments; I am the one who can speak the medical language and I am the one who can answer all the medical questions, so I am the one who needs to go (and wants to, too). I take time out of my workday to trundle to all the medical appointments, many of which are very stressful and scary, and then need to make up the work time late at night. It takes a toll. The chronic sleep-deprivation, the constant feeling of being behind at work, and then the stress of whatever happened at the doctor’s – it is hard. Add to that the regular household work befitting a wife and mother, and it is not long before the inequality becomes frustrating. I often feel like singing “Under the Bridge” – or at least the first line.

This post may make it seem like my marriage is troubled. That is not completely true. Chad and I love each other so much. He and I were meant to be together – what God has joined together, may no man rend asunder. We have weathered so many storms, and we grow closer with each one. We are on this journey together – even if, sometimes, we are walking down opposite sides of the street. We are rock solid, even on the rocky roads. He is my rock.

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Sweet Girl

When she’s not overheating or really hungry, Gracie is a very sweet girl. She is a little love. When my parents were in town, she would bring Grandma blankets and pillows to put her feet up on. She did the same for Grandma when we saw them at Thanksgiving – she remembered what Grandma likes and made sure she brought it. She loves to give us big squeezy hugs, and sweet soft kisses. (Sometimes we get wet kisses, too – ew!) Lately, she has been randomly calling out to me – “Mom?” “Yes?” “I love you.” AWW!! “I love you too, Sweet Girl.”

Doctors don’t usually see Gracie’s sweet side. Talk of behavior issues has been making it into medical reports lately. Gracie puts on quite a show for the doctors – biting me, hitting, refusing to do anything, etc. It’s embarrassing for me AND for her (although she’s not embarrassed yet). But really, I think she’s acting out because she’s frustrated about the whole doctor experience – the parade of new people trying to figure out what’s wrong with her, or trying to help her through nasty infections by, say, cutting off part of her finger, or putting casts on her, or other things that restrict her liberties and make her life harder. And she is a toddler still, after all. She is only 4, and it’s absolutely age-appropriate for her to act out her frustration with bad behavior. It’s just that she’s so smart that it’s easy to forget how young she really is. When she behaves like a typical 4-year-old it is out of character for her.

Whatever the doctors may think, I know the truth. My girl is a sweetheart and a love. She is kind and loving and nurturing. She is a sweet little love, my little Amazing Gracie. <3

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Thankful

Thanksgiving is a time to reflect on the things we are grateful for. I have so much – I am grateful for my two beautiful kids and my steadfast husband. I am grateful for our two old dogs and our sweet and sassy kitty. I am grateful for our house, our jobs, the ability to feed our children and drive them to school and give them niceties. I am grateful for my strength and health – it would be a whole different ballgame if I were not made of steel. I am grateful that, right this very minute, Gracie is relatively healthy. I am grateful that we are able to spend the holiday with the kids’ favorite Auntie and grandparents. I am grateful that we didn’t end up in the hospital fighting an infection during this holiday. I am grateful that we have a great team of doctors and therapists/other medical professionals helping us navigate this world without pain. I am even grateful for all the challenges we’ve faced with schools and other medical professionals – they have taught us who is on our side, who really cares and who is just ticking boxes as they do their job, and how to really appreciate when someone does really care. I have SO much to be grateful for, more than is listed here by far.

I am grateful.

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Packing

We are going on a road trip tomorrow. We are going to drive to my sister’s house so we can spend Thanksgiving with her family. My parents will also be there – it’s sure to be a great time for all of us. Tonight, we packed for the trip.

I would imagine that many parents would consider packing a few band-aids and maybe Tylenol for a short vacation. Some might bring a thermometer too. We packed a bit more than that. I got the band-aids, Tylenol, and thermometer, plus some Benadryl, a couple medicine syringes, the pulse oximeter, about five rolls of different kinds of medical tape, gauze, two-inch and three-inch ace bandages, vaseline, Aquaphor, Eucerin, silver gel, triple antibiotic ointment, fancy wound care dressings, medical scissors, tweezers, saline, her special gloves to protect her hands, her cooling vest and extra ice packs, and maybe some other stuff I forgot to mention, too.

Most of that is stuff we don’t currently need; of that whole list, the only things we are using daily are the two-inch ace bandages and some tape. You can never be too careful, though. Once, on vacation, Grace bit herself and her bone was exposed, and I was so glad to have the fancy wound care dressings and silver gel. Once, she fell and sprained her wrist and needed it to be wrapped. Once, she got rug burn over her entire legs and torso when she was sliding down carpeted stairs. Several times, she’s gotten fevers while on vacation. You just never know what sort of injury or accident could happen, and it’s best to be prepared for everything.

Here’s hoping we don’t need any of the extra stuff!

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Advocate

One of the things about being a special needs parent that you don’t hear about right away is how you have to become your child’s advocate. You know your child best, so you know when something is not right, and you have to educate doctors or other providers about how you know your child isn’t acting like herself or himself. But it gets very, very tiring. It is obnoxious to always have to fight for what seems like should just be given to your child. It is crazy to have to work so freaking hard to – well, I guess the word is teach – to teach others what normal is for your child.

So, the drama – how advocating ties into Gracie. I’m getting there – bear with me. I spent my birthday last Sunday worried that something was really wrong with her hand, then Tuesday we had confirmation of sorts from the ortho doc. I spent Wednesday worrying about the MRI – wondering if it really was the right thing to put Grace under general anesthesia, worrying about whether another hard-to-treat infection was on the imminent horizon – and nothing happened. No one called to schedule the MRI, nothing happened. Thursday, though, doings were afoot (as my Southern husband would say). I got a call at 11:30, just as I was about to leave work to pick up Gracie from preschool. It was the nurse at the orthopedist’s office. She called to tell me that Grace’s regular ortho, who has been out of the office lately, is back and thinks the x-rays show healing fractures and therefore the MRI is not necessary. I about lost it – my little girl could DIE from an infection, and they’re not even going to LOOK for it??? The nurse on the phone was somewhat surprised that I was upset. Eventually, she scheduled an appointment for us for the following morning with the regular ortho.

I didn’t sleep much Thursday night. I was so worried that we would burn the bridge and not be able to work with this ortho again because she wouldn’t be working for Grace’s best interest. I spent hours awake in bed, worrying. I finally fell asleep right when my alarm went off for work – that makes for a bad day!

By the time we got to the appointment Friday, I was resigned. I was too tired to fight – too tired to reject whatever solution the ortho would offer. I could barely make it through the day. But, to my surprise, the appointment went fairly well. The doctor spent a great deal of time with us, showing me x-rays and showing me exactly where and when the supposed fractures happened. She answered all my questions, she addressed all my concerns. We were civil with each other, more than civil – we had mutual respect for each other. It was better than I could ever have expected. We left the appointment with no hardship on any side.

I am still somewhat skeptical about whether it’s a fracture (three fractures, technically) or infection causing the swelling and heat in Grace’s hand. But, at some point you have to accept that the experts know what they’re doing, and maybe the doctor is right that it’s a complex 3-bone fracture rather than an infection. For now, this is good news. I am still shell-shocked and waiting for the other shoe to fall, but this is good news. Halle-freakin’-luiah.

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Here we go again…

Well, $#!+. We got some bad news today.

About a month ago on a Friday, Gracie’s hand mysteriously became swollen. I had put her glove on at 10 am and the hand was fine. I took the glove off at 12:30 for her weekly OT session, and the hand was grossly swollen. Weird. But, you know, she had had a couple of spider bites in recent weeks/months that caused a huge amount of swelling and they went down in a day or two, so I didn’t rush her in for x-rays – I wanted to wait and see. Well, by Monday, the swelling was a little worse, so I took her to her pediatrician for x-rays. The radiologist who wrote the x-ray report thought there could have been a fracture in one of the hand bones, but when we went to ortho the next day, the orthopedist didn’t think it was a fracture – he thought it was just a channel in the bone. We went back a week later for repeat x-rays, and at that time he showed me where the bone looked fuzzy on the side, which he said could represent a healing fracture. Still, he wasn’t convinced, and sent us home with instructions to keep the hand in the removable cast his office had made after the surgery.

Flash forward to this past Sunday (my birthday). The swelling in Gracie’s hand hasn’t gone down this whole time. On Sunday, my birthday, Gracie’s finger – the one with the recent amputation – became red and HOT at the tip. Actually, her whole hand was hot, and of course swollen. Only the tip of that finger was red, but there was so much heat. Worried (very worried), I texted her pediatrician (Dr. A) to see if we should go to the ER then, wait until Monday and see Dr. A, or just keep our ortho appointment Tuesday (today). She never responded, so I spent the whole day agonizing over whether to take Grace to the ER or wait until the work week when we could see Dr. A, who knows her and knows how she can be very, very sick and look fine. Eventually, because it was my birthday, I decided to wait until Monday and see Dr. A.

Have I ever said how awesome Gracie’s pediatrician is? She is AWESOME. Awesomely awesome. I never have to spend time convincing her that it’s a big deal – she knows I wouldn’t contact her if it weren’t. She was concerned, and wanted to do full labs and x-rays. I talked her out of the x-rays, knowing that Dr. P the ortho would want to do them at his office. She did blood work, which was normal. Of course it was normal. Even when her finger was mushy, her blood work was normal – it’s another unique and mysterious thing about Grace.

So, today, Tuesday, we had the ortho appointment. We walked in the room for what was supposed to be our discharge follow-up from the surgery, and the nurse asked how things were going, so I told her – Grace’s hand is still swollen and her fingertip got mysteriously red and hot on Sunday. That was not the answer she was expecting! We did some x-rays, and the doctor came into the room. He had bad news. “The x-rays have changed since we did them last time. There are two dark areas on her metacarpals that were not there a month ago. It doesn’t look like a fracture. Could it represent an infection? I don’t know. I think the reasonable thing to do now is an MRI. She needs full sedation, right?” Yes, of course she does. She can’t sit still for five seconds, let alone an hour or so in an MRI machine.

Bummer.

It’s not that I didn’t know – I spent Sunday agonizing over whether to take her to the hospital immediately – but this is so scary. It seems so certain that it’s an infection, that the infection spread when her hand was so red and streaky last time. After all, the streaking went halfway up her forearm, and her whole hand was bright red. It wouldn’t surprise me at all if the infection had colonized the bones in her hand as well as through that finger.

But what does this mean? Will she have to have surgery again? Will she lose more of her finger – will she lose her whole hand?? Surely they wouldn’t take her hand; surely they would do a bone graft or something, right? Right?? And, we were supposed to go to my sister’s house for Thanksgiving to see her & her family and my parents, who will also be there. Will we still be able to go? Are we going to spend Thanksgiving in the hospital this year? God, I hope not. I desperately hope not. And, there’s the big question – will the antibiotics work? Please, God, let them work. Please let them work. Please please please let them work.

Thank God we were able to catch our breath a little after the debacle with the school. We’re walking into the fire again.

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