Holy Week for the rest of the Christian world was more like Hell Week for us.
Nothing tragic, but it was a week long test of my ability to remain “sunny.” As I was writing on Wednesday morning about what a rough day Tuesday had been, I had no idea that Wednesday wasn’t going to be the Hump Day I hoped it would be.
Nathan looked worse, but at first I attributed it to the virus running its course. He was on two medications and we were supposed to follow up with our pediatrician on Thursday, so I wasn’t worried.
Then 2pm came and I woke him up from his nap to go get Sarah Kate at school. Did he look worse AGAIN? I thought maybe he did. I put him in the car and drove to the school. Once we were out of the house and I could see his sores in better light, I decided he was worse. A lot worse. On the way home, I stopped at the pediatrician’s office to see if they could see us. They did, immediately, taking us to the back – and by “back” I mean WAY back – bypassing many parents and children in the waiting room.
When the doctor came in, she took photos of Nathan’s sores and informed me to go home, pack for a few days, and go to the University of South Alabama Children’s & Women’s Hospital, even though there is a good smaller hospital right across the street from her office.
Now I was worried.
Nathan was placed in another Way Back Room at the hospital, far at the end, with double doors that would alarm at the nurses’ station if opened. A washroom with boxes of gloves, duck bill masks, and disposable gowns filling the shelves separated the outer door and the inner door. We sat alone in the room for awhile until a six-person cadre of medical professionals – nurses, residents, and an attending physician – entered at once. Just before they entered, a friend texted me:
Except that they kinda were. Each of the six people crowding into our tiny room was nearly indistinguishable from the other because of the garb they all wore. Crap. We were one step above quarantine, I thought (…Do they still quarantine people?…Maybe this is actually the New Quarantine…My goodness this room is tiny…)
The rest of the evening was filled with blood sticks, nose, mouth, and lesion swabs, and starting an IV on a resistant toddler who couldn’t understand what was happening. Following the IV, around 10pm, the IV medications began – three of them, each taking 45 minutes to an hour to administer, on a six-hour rotation. I didn’t sleep at all, and just the attempt to do so on the wretched hospital furniture caused every muscle in my body to ache the next morning. This stuff wasn’t comfortable to sit on, yet I was supposed to SLEEP on it?
Through it all, I did what moms do. I comforted. I calmed. I snuggled. And I worried.
I worried that they were wrong about it being viral. I worried that it was viral, but he could have complications. I worried that the secondary bacterial infection could get worse. I worried that he’d rip the IV out of his arm, despite the precautions taken to prevent it. But mostly, I worried about how Nathan will look after his sores heal.
What?
Yes, that’s right. I had little fear that he would get better; call it instinct or optimism or faith or what-have-you, but I never truly doubted he’d get better, in spite of all of the medical horror stories about Down syndrome I’ve read (none of which have thus far come true). No, I choked back tears while on the phone with my mom, saying,
And as I heard myself saying it out loud, it sounded as crazy to me as it probably seems to you.
I’ve never been a vain person (I don’t think…) I don’t care much about fashion, makeup, and accessories. I decided at the age of 38 that I didn’t want to color my hair for the rest of my life, despite the fact that I went gray prematurely, so I stopped. Most of the new clothes I’ve acquired in the past five years have been running clothes. I do wear makeup – sometimes 🙂 – and I haven’t “let myself go” because I’ve been this way for twenty years. Not that I take a lot of pride in my lack of vanity – I have plenty of other faults to make up for it.
But suddenly I discovered vanity within myself about my two-year-old son.
I wondered if I might be insane, or at least temporarily unable to think clearly from exhaustion. Why did it matter so much to me that Nathan might have chickenpox scars on his face? He’s a boy! He’s not going to care! Lots of people have chickenpox scars!
And then it hit me.
It has everything and nothing to do with Down syndrome. Since Nathan was born, I’ve fallen in love with the almond-shaped eyes, round faces, and flatter profiles. I especially adore the young kids who wear glasses – a weakness of mine that predates my induction into the T21 community – although I hope we dodge that obstacle, for practical reasons. But like most mothers, I look at Nathan and see the Most Exquisite of the Beautiful.
I know I’m not the first to believe that my child is more beautiful than his or her peers. Five minutes of watching “Toddlers and Tiaras” tells me that other mothers feel the same way I do (hopefully it’s not just the pageant moms and me…) I also know that lots of people will never see my son as beautiful, if they even see him at all.
But I will see him, and others in The Secret Society of T21 will see him, and I want the view to be of perfection. Because he is perfect, in every way.
And the fact that I just said he’s perfect proves that I may be insane, or at least exhausted. When I can say that about a kid who does things like this, you know it’s bad.
Yes, it’s time to plan my Great Escape.
SIDEBAR: Did you know that vaccines sometimes aren’t as effective on kids with T21? Me, neither. Nathan had the chickenpox vaccine but still got a severe case of chickenpox, and they tell me that’s why.
You do realize that these pictures do nothing to help that “Kids with DS are always happy” myth thing, right? 😉 So he’s still beautiful and he’s still happy.
I can assure you that he is not all happy when I am shoving those three medications down his throat multiple times per day… 🙂
I hate to tell you, but that kid is cute, with or without Downs! I love that little smile and twinkle in his eye that says yes I’m cute, I know it and you better watch out!!! I hope you are both feeling better.
I just think he is so darn cute. I love the “planning the next escape” picture, so cute because it looks like he trying to open the door to let the dog in. My baby girl always reminds me about our dog, because when we let her out I sometimes forget, but thankful Lacey has a good memory and tries to help ger her back in the house.
Well he IS cute!
And I do get what you are saying. When Nichole had chicken pox I worried about that too. Because I know that some people cannot see past Down syndrome, and I did not want scars to add to the “different” and “disabled” stereotype. So it has nothing to do with vanity, but the reality that in a world that praises beauty, we know what our kids are up against since they look “different.”
Yet, like you, I think my Nichole is perfect! She is one beautiful little girl and her eyes capture me every time. 🙂
You hit the nail on the head, Ellen. I don’t want to be more different than he already is. I think my fear is that he would go from “unique” to “different” and while those two things are similar, they aren’t the same thing.
Your comment about children with glasses is JUST what I needed to read today! My “little” Reid was put in glasses 6mos ago at age 2. He had eye surgery in January to correct a cross in his eye, and unfortunately, the surgery did not do all that it was supposed to do and he will probably need another one. I look at my little angel with those glasses on and it just breaks my heart. I don’t want him to look different and for people to stare at him. I know things could sure be a lot worse and I thank God that it is “just glasses”. Thanks for having a soft spot in your heart for children with glasses! It sure helps!
Oh…..I am so sorry about the chicken pox. I had no idea that the vaccine wouldn’t be as effective on Nathan. I’ll give you one “positive” about him having chicken pox…………he’ll/you’ll never have to deal with the dreaded molluscum contagiosum!
Glad to be of assistance! 🙂 Our neighbor down the street is in first grade and wears glasses. I think he is ADORABLE! In fact, my parents were here a few weeks ago and he came by to see if Sarah Kate wanted to play. My mom gushed about him after he left – said he was the cutest thing she’d ever seen. Coming from a woman who taught first grade for 28 years, I’d say she’s seen more than her fair share of cute kids!
As a Mother you are most definitely allowed even required, to think that your child is beautiful and Nathan is certainly beautiful. His smile lights up the world.
I agree with you and Ellen about the sensitivity to looks. It’s all part of our path of acceptance. I too have fallen completely in love with the “profile” of our exotic children and kids with that Harry Potter look just are extra adorable. Hugs to poor Nathan and an extra hug for Mom!
Bless his little heart. He does look very happy despite the chickenpox. I hope you both feel better:) Hopefully Hell week is totally over for you, or it will be after you finish giving him all of his medication.
Oh my, I just caught up on your whole story. I’m so sorry that you guys had to go to the hospital! Are you still there or have you been de-quarantined yet? And is it hand-foot-and-mouth or chickenpox? Or both? That’s interesting about the vaccines. I’ll have to tell my brother about that for his son.
I totally get it about the scars though. Since even the NICU days everyone has always gushed that my boys are adorable. They are, but that’s not the point. It’s almost become a consolation prize or even “well, your son has special needs BUT AT LEAST HE’S ATTRACTIVE and that’s what really counts!” Since they are boys, it’s different, but I feel a little bit of my feminism kick in when this happens. I know for sure that if I’d had daughters I would very much discourage people from seeing their sole or primary value be in how they look. I don’t think it’s healthy for my guys either.
But then they smile at me, and I think “God, it’s a good thing you guys are cute!” 🙂
They decided it was chickenpox, not HFMD. It was weird, though, because he had very few places on his chest and back, which are a lot of times where the ‘pox start or at least where they are the worst.
As for the cute thing – I really do think Nathan is cute, and I really do think that other people think he is cute, and I have no doubt he’s going to get away with MURDER when he gets a bit older, because he is SCARILY good at flashing a smile to win me over now!
lol, P.S. I looked up the wikipedia on hand-foot-and-mouth and guess what! You made wikipedia! Scroll down to 2012 cases and it lists a severe outbreak in Alabama. The only other listing? Reed College, which is right near us! Go figure. Guess I need to make sure not to go there for walks as I sometimes do!
I have to say, when your blog page popped up my first thought was, “Gosh, another ADORABLE picture of this precious boy!” A comment on both his sweet self and your photography. I totally get it, though. I didn’t take pictures of Aidan’s first year at all because he had major strabismus (googly eyes) and extreme disgusting eczema. I obviously regret that.
Hoping Nathan is on the mend and you are rested! Heather
I have tried to take a few pictures documenting the ‘pox, as much as I hate it. I know I’ll wish I had them someday, just like I’m glad now that I have the one of Sarah Kate with the puffy face after her surgery in the hospital.
I have just discovered your blog and ran across this post. My children both suffer from eczema, a skin disease, and have had it in all the varying stages. I don’t consider myself to be vain either but have found myself worrying about how they will look when the scars are healed.
I look forward to reading more about your beautiful family!
Thanks for stopping by, Julie! Welcome to Bringing the Sunshine!