Motherhood…Unprepared

Well, I definitely haven’t accomplished this the way I wanted to, but any effort is better than no effort, right? Right?

One interesting thing I’ve been thinking about this week is how I look at presents for Henry differently than I do for my other 2 kids. I end up doing a lot of evaluating a toy because of Henry’s unusual interaction technique with most toys.  I end up going to Amazon.com and looking through all the toys appropriate for his development level and evaluating how much they’ll hurt when he whips them at me. Because if it isn’t nailed down or doesn’t weigh more than 15#, he will throw them.It’s not even a matter of “if”, but simply a matter of “when”. So there are many presents that look good and that I want to get for him, but I know they’re going to end up just really, really hurting me. Or Maggie & Steven. Sometimes I continue to try, though. Like with Fisher Price’s Little People. I know he loves them and I know if I can play with them with him, it’ll be okay. Mostly.

But in many cases, I look for toys that are good for his sensory development. For his birthday, I got him a Body Sox to play with him at home. Admittedly, it doesn’t hold a huge “fun quotient’ among neurotypical kids. But, for Henry, it’s the best thing ever. Right now, I’m just putting him in it, closing it up (no, really) and swinging him back and forth about 10 times. Then I put him down, open it up and he laughs and says, “More, please!” So we do it again. Let me tell ya, swinging a 35# child at approximately waist level is quite an upper body workout. So I can only do it about 3 or 4 times before my shoulders give out. But he loves it so much. Honestly, he’d do it as much as I allowed. Every time I open the bag, he’s laughing and saying, “More!” or “More swing!” I was reading through the book “The Out-Of-Sync Child at Play” and they suggested using the Body Sox with ball pit balls as a sort of laundry game.

For Christmas, I got the best idea from my aunt. Her daughter is making these handmade alphabet blocks for her niece. She did a lot of the work, and my aunt brought them with her as she’s housesitting for my parents. So I saw them when I was over last week and asked about them. She explained how she was doing them and my mind starting running. I could combine this idea with Henry’s sensory needs and come up with “sensory blocks”. Putting the letters on each block, but also adding pictures of loved ones, different kinds of fabric to feel, 3D elements like buttons, textured stickers, ribbon tags. So I got started. It’s a project that’s going to take awhile, but here’s what I’ve got so far.

Clockwise from left: Daddy, “h”, apple, Mom-Mom, Uncle Tony, Elmo, Great-Grandma, pig

Clockwise from left again: dinosaur, Henry, Uncle Andrew, Maggie, tiger, elephant, Great-Grandma (same side), panda

And again: “d”, horse, apple (same as #1), “m”, train, Uncle Eric, gorilla, Pop-Pop.

See, so each side has something different on it. This is just a small sampling. I actually got a bunch more worked on today and I’m really excited to see how they turn out when they’re all finished. After all 6 sides are done, I’ll cover them with Varethan water-soluble polyurethane to seal everything in, make it glossy and protected. I sure hope he likes them and doesn’t just use them as shrapnel.

It’s here. He’s 5. I cannot believe it. We had a small party with us and my aunt. A little cake and a few little presents. I’m still a little disbelieving of it. See, technically, Henry almost was never here. A few small changes and he wouldn’t be.

When I was newly pregnant with him - about 8-9 weeks along - I had some spotting. Which wasn’t unusual for my pregnancies, but since I’d had 2 miscarriages in the past, I was vigilant about it. I went in, had blood drawn and had a quick ultrasound. And was informed by the doctor that he couldn’t find anything. Nothing. No baby. Just an empty sac. Very often what happens in these cases was just that you go in and have a D&C to eliminate everything. In fact, my first pregnancy ended just that way.

This doctor, however, hesitated. He actually said that he wanted to wait a few days and see what happened and he’d probably schedule a D&C then. But he didn’t want to do it yet. So, I went back home to wait. And wait. And wait. 5 days later, I went back and had another blood test. Surprisingly, my HCg levels went UP. Which made the doctor go, “Hmmm.” So, another ultrasound. This time? They found him. There he was. Measuring right on schedule. I don’t know where he was hiding previously, but I do know that I thank God all the time for that doctor. My first OB would have aborted Henry without knowing that he was fine. I wonder if that’s actually what happened with my first pregnancy. But…dwelling on it won’t change the past. All I know is that I’m very, very thankful that Henry’s doctor hesitated. Otherwise, he wouldn’t be here.

He wouldn’t be here to celebrate turning 5. I got a very simple little cake from the grocery store and bought a big Elmo card that I stuck into it. I got him a mini Elmo Speak & Spell thing that he loved. Maggie wanted him to have a Webkinz, so I got him a pig an elephant and a cat. He didn’t much care about those. But he loved that we all sang Happy Birthday to him and smashed his hands into the cake. Check it.

For the record, he did NOT like the cake. He did NOT like the frosting. But the boy digs on Elmo.

It’s amazing how, when you’re dealing with a life that is different in its development, how the simplest milestones are a big deal & the big milestones?? Are earth-shattering.

So, Henry was very, very delayed in his walking. We knew he’d be late, but we hoped that meant 18 months or maybe 2 years. When 3 came and went, we were frustrated, but kept reminding ourselves “Henry will do it when he’s ready”. Which turned out to be at 3 1/2, at summer school.

That day, he took 5 or 6 steps straight into my arms as I picked him up from school. Then we came home & I made him walk everywhere. To his high chair for lunch. Back to the living room to watch Elmo. To his room for his nap. And I was sobbing like Sobby McWeeperton during The Grand Festival of Sobbing & Weeping. I was really looking forward to Steve coming home so he could see it. And this is how great he is - when I got a hold of him to tell him the news, he said, “What kind of cake should I get?” I just went, “Duh….what?” And he said, “To celebrate. We’re having a cake.” How cool is that???

So when he got home, we had a performance in the living room followed by everyone enjoying some lovely chocolate cake as we sang, “Happy Walking to You”. I captured a little on video.

It doesn’t get any better than this. The joy in a milestone finally reached. You’re a rock star, Henry.

Well, I’ve already failed at the whole 31 for 21 concept. But I’m trying. I really am. I just honestly can’t think of anything to say right now. Other than “Henry’s cool”. Which is true. But doesn’t help much with raising awareness about Down Syndrome.

One thing I’ve experienced in a capacity greater than I ever thought possible with Henry is joy. We all experience joy in our relationships with our children, but I’ve never seen a child experience joy the way Henry does. It’s on a whole other level. When he’s happy, truly happy, he lights up. His whole face goes into overdrive. Literally - he smiles so infectiously, his whole face disappears. Here are some pictures I’ve captured over the years.

Is there anything, anywhere happier or more filled with joy than this face? i think, without a doubt, the answer is a resounding no. Henry’s face has the ability to express unbounded joy unlike anything I’ve ever seen. It’s as if his whole face explodes with it. His happiness is visceral & palpable. He can barely contain it. His smile is a wonderful boost to an often downtrodden mood. It’s so very, very cool. And that’s the way he is in many areas of his life.

There is simply no way any literary definition of this word could even begin to capture how “joy” has been embodied by Henry. I see it every day - enjoyable activities become an exercise in joy unlike anything ever before seen. His whole body vibrates, his eyes go wide with excitement and he roars. A totally exuberant, ear-piercing roar that is all-encompassing. What’s super cool is that so many things can elicit this response from him. Music of any kind, something yummy at mealtime, the chance to dance, Elmo, The Wiggles, Cherub Wings and, most especially, bathtime. As soon as he hears the bathtub faucet turn on, he shouts “BAAATH!!!” and does everything he can to get to the tub. When he gets in, he totally freaks out. He grabs at the stream of water with both hands, squealing with delight as the water sprays him in the face. He splashes the water as hard as he can with both hands - roaring & squealing the whole time. He brings his face down to the water line - I’m assuming in an effort to better see it - and then is surprised when he accidentally gets a mouthful. He giggles with glee when the Spongebob cup of water gets poured over his head - especially when Steven does it. It’s amazing to watch & I’m so blessed to be able to experience joy through Henry’s eyes. Truly amazing and truly, wickedly cool. Don’t lose it, Henry. It makes you unique & YOU.

I wanted to share about the time we almost lost Henry. It was the most horrible week of my life. In March of 2004, Henry was 4.5 months old and he got sick. At first, we just thought it was a cold. but he got worse. On Tuesday night, the 2nd, he ran of fever of 102.9. The next morning, I took him to the doctor. He looked awful - lethargic and extra-floppy, labored breathing, hot, coughing - the whole 9 yards. All I got from the doctor was that I needed to get my hands on some breast milk and give it to him. I KNEW he was wrong. I KNEW it was worse than that. He was about to send me home with a phone number for La Leche League, when I realized that he was very, very sick. I said, “y’know, he’s just not right. He’s SO lethargic and with the high fever last night…”

The fever finally registered with the doctor and he said I should take to Children’s Memorial downtown right away. By the time we got him down there, his fever was 104. In front of my eyes, the ER went into overdrive with him - his oxygen sats were in the 60s and they rushed him back to get him on oxygen, take blood and all that stuff. They were in a panic to get him into a room - I remember the doctor going on and on about it and asking over & over if the room was ready. Finally, it was & they rushed him upstairs to the PICU. he was in an isolation unit at the end of the hall with his own nurse. His tiny, floppy body was all naked with tubes and monitors on him & a big, huge, cast-like thing on his arm with the IVs to keep them from pulling out. He kept biffing himself in the head with it.

They then put him on a BiPAP machine so he could breathe.  It was so big & he was so small that it wouldn’t stay on properly. He’d let out these little mewling kitten cries from inside that were all muffled and pitiful. We were able to get his pacifier in under the BiPAP, which helped, but due to all the tubes & wires, I couldn’t hold or comfort him at all. I could only stroke him & talk to him from his cribside. I can now admit that I was terrified. Even with the BiPAP, his oxygen sats weren’t going up at all. They kept saying, “We’ll keep trying, but we may have to intubate.” which scared me so much.

On night 3, as I was sleep on a cot in the waiting room, I was awakened at 4 am by, “Mrs. Sturm, you need to come…” I SHOT out of bed, jammed on my clogs and ran behind the nurse, trying to clear my head. She tried to calm me by saying it wasn’t an emergency, but in my befuddled mind, you don’t wake somebody up at 4am unless it’s an emergency.

When we got through all the automatic doors & down to his room, the doctor explained that he was just working WAY to hard to breathe & was so tired that they’d decided to intubate him so he could rest & get the oxygen he needed. Unfortunately, I couldn’t be there with him while they did it, so I had to wait in the hall. It all caught up there. I started sobbing. Thankfully, an amazing aide stopped to talk to me about it all - explaining that it didn’t mean he was getting worse, but just that this would help do the work for him so he could rest. She took a good 20 minutes to talk me down & I’ll always remember that. Once he was done, I could go in & see him. He was SO tiny & helpless, I just wanted to hold him & make it all go away.

He stayed like that for several more days & I just walked through the days; reading, watching TV, and going down to the cafeteria. He was sedated through all of it, so there wasn’t anything I could do for him. Just waiting. Finally, on the 8th, he was doing well enough that they could take him off the BiPAP & we could start feeding him the next day. I finally got to hold him again. My Squishy. I was so thankful.

During all of this, one song kept going through my head. I had woken up one morning and started singing, “You give and take away…You give and take away….” over and over. When I realized what I was singing, I started crying. It was as if God was saying to me, “You have to be prepared to accept whatever I’m going to give you here…” I immediately got angry, but the song continued to reverberate in my head. I needed to accept that God was wonderful - no matter what the outcome. I needed to bless Him even in my desert places, when I’m possibly going to lose my son. I just repeated these lyrics over and over - reminding myself that how I responded to this was a CHOICE. So…I chose to bless Him, even as I faced the worst possible scenario. I sang that song to myself so many times that week. Wonderfully, everything turned out okay. Henry recovered and is almost 5 now. But I’ll never forget how I almost lost him.

I just wanted to share some of Henry’s early pictures. There aren’t a lot here, but you can see what a little chub-chub he was, how TINY he was early on and that, even at an early age, he was playing with things, interacting with things and enjoying life.

I just have to say and share how much y’all and your comments are encouraging me during this 31 for 21. I’m so thrilled to hear what y’all have to tell me. Hearing about people you know with Down Syndrome and how much you’re enjoying getting to know Henry and even people saying that they’re learning more about Down Syndrome from what I’m sharing.

THIS is the beauty of this month’s goals. Not that we who are parents of kids with DS can shove our kids down your throats or make you feel guilty for the things that you’ve thought or said or even trying to make enough noise so that bigwigs will earmark more money for our causes. No. It’s the beauty of sharing and learning and combating ignorance on all fronts. Our country has slowly moved away from ignorance and prejudice in so many areas - racism, sexism, sexual preference - but it’s seemed for quite a while that it’s still okay to look down upon those that don’t “measure up” with developmental or IQ milestones. But that’s what’s encouraging me. People like those who have commented saying they’re learning. They’re growing.

See, ALL of our children are beautiful. ALL of them deserve respect and love and choruses of “Aww…how cute!!” Not some of the responses I received after having Henry - people who didn’t even acknowledge him as I held him and gave me pitying comments. Even saying things like, “I’ll pray that God will heal your son.” Which would have been lovely if he was sick. But he wasn’t. But because that person simply was ignorant about Down Syndrome, they didn’t know how off the mark it was. Lovely sentiment, totally off-the-mark. That’s all I want to put forth here in my little blog. That my child and all the other children, teenagers, young adults and adults with Down Syndrome are EXACTLY THE SAME as you or me. They have friends. They have stuff they like. They have stuff they can’t stand. They love music and movies and good food and vacations and reading and learning and having fun JUST LIKE EVERYONE ELSE. Yes, there are some things they can’t do. But those things are getting fewer are farther between as they are getting more and more of the help and training they need from an early age. But they’re not catching. You’re not going to CATCH Down Syndrome if you touch somebody. (Though I think some people could use a little bit of that extra chromosome).

Listen, my goal is simple. Come to know someone with Down Syndrome. Put aside your fears and your uncertainties and get to know them. Maybe it’s a small child of someone you know. Maybe it’s a young man or woman bagging groceries or being a greeter at a local store. Maybe it’s someone in your neighborhood or at your church or something like that. It’s a very easy first step. Smile at them. Say “hi”. Do just that a couple of times. Then, once you’ve made contact, ask how they’re doing. Ask if they’re having a good day. Ask if they’re enjoying the weather. Ask if they saw a movie that just came out. Ask if they have a favorite book, movie, song, tv show. And talk to them just like you would talk to the cashier or the bus driver or an acquaintance at church or the mailperson.

And if that fails you, just keep checking in here. Watch Henry’s videos, read his stories, look at his pictures. Ask me questions if you have them. Scroll down and click on the “31 for 21″ picture and go find some other blogs by parents with Down Syndrome. Get to know us and our kids. You will totally be like us - better for the journey!