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Friday, October 30, 2009

Monday, October 26, 2009

What a difference a year makes

Today, we're preparing to pack up our (former) dream house and getting ready to move to a need-to-have-a-single-level-in-order-to-accomodate-pediatric-wheelchairs house.

But one year ago today, we found out our sweet twins have Spinal Muscular Atrophy, a genetic and fatal disease.

What a surprising turn of events.

Getting the diagnosis of SMA is a death sentence for about half of the kids who are diagnosed. These are real, live, cooing babies, just like your baby, and your baby, and your baby. My twins are just like any other two year old in most ways--they love to spot airplanes in the sky. They adore The Wiggles and Baby Einstein. They prefer to play with my cell phone and a big box of Kleenex (to rip the tissues out of, of course), but will settle for wooden puzzles and blocks, and they have tea parties (while strapped into chairs on the floor so that they don't fall out). They really love to swing on the swing set outside. They adore their big sister and their Aunt Kimmie and their grandparents. They started out completely normal, and we parents had no clue anything was wrong. But we now that we're incredibly lucky that they are even as strong as they are.

Statistics on SMA are that 50% of SMA babies die before age 2. How both of my twins both fell on this side of that 50% is beyond me. I struggle daily with the question about why my kids are alive and kicking--well, not literally kicking, but they can wiggle their feet--while other kids with the same disease don't make it a year or even a week here on Earth. I'm no different than their parents--just as clueless, just as hopeful, just as surprised to learn that my kid won't grow up to kick a ball or annoy me by leaving the refrigerator door open one day. On a daily basis, I mourn the loss of all the babies I know of who have died since my babies were diagnosed--Logan and Zane and Kayden and about twenty others, at least--and I grieve for their parents. And for the thousands of babies who died of SMA before I knew what SMA was. Each of those children was a gift to the world, and SMA stole them away from all of us. SMA overwhelms me most days, you could say. I never even knew the disease existed until the twins were diagnosed. Now, I wake up several times in the night to turn over my children's bodies because they can't do it on their own, and they could get sores from laying for so long in one position. It's sure not how I pictured raising twins.

We had no history of SMA in our family trees before the twins were diagnosed. But 1 in 30 people are carriers for the gene--regardless of race, ethnicity, or continent. You could be us. And while SMA is a tragic diagnosis, one thing is for sure--when it comes to SMA parents, never have I met such wonderful, down to earth, funny, compassionate, sweet, smart people. I mourn my childrens' diagnosis, but with their diagnosis came the friendships we've made with such wonderful people. I know that sounds cheesy, but it's true. We never would have found these people without the commonality that this dirty, rotten scoundrel SMA has provided.

I've been thinking about it all. Life didn't really play out the way we had planned. But I still say it's important to make plans for your future--Good things don't usually happen to people by accident. We have to be responsible and work hard and save and make good decisions to make that happen. But in this case, despite all our responsibility and working and saving and good decision-making, life threw us something we never expected and sure didn't want. Maybe we'll embrace it as an opportunity, or maybe we'll never accept it. It has challenged our expectations. It has frustrated us, and challenged us to become better people. I'm allowing myself to wallow and indulge in lots of self pity occasionally. I think about presenting my arguments to God and beg Him for an explanation. But sometimes, I just sit back and try to realize that regardless of our thought and planning, or lack thereof, sometimes things happen and it's just not fair and it's not our fault. And then it's time to gather all our energy to make a positive difference and help kick SMA's ass.

I am convinced that SMA is curable. Plenty of experts agree. The NIH recently listed SMA at the top of it's list of priority diseases to receive funding because they feel that the disease is so close to finding a cure. And a cure for SMA could lead to cures for various other neuromuscular diseases, as well.

Families of SMA raises money for research grants to places like UC Irvine, Duke, Johns Hopkins, and Ohio State to find a treatment or a cure for SMA. Help us in our efforts to support FSMA by throwing a few bucks to Team Double Trouble before 11/21/2009.

As an aside...if you haven't met the twins, you really should. Actually, you should meet all three children. They are all completely charming and unique and adorable. I try to represent them here as fully as possible using photos and You Tube, but it's not the same to hear them speak and laugh in person. I hope to meet many of you SMA folk at the next FSMA conference next June in nothern California. But to anyone else, if you haven't met my children then you are missing out. They are angels on Earth, I swear it.

God bless us, everyone! ;)

Sunday, October 25, 2009

Boo at the Zoo

The kids indeed got their H1N1 shots on Saturday! And nobody is sick yet today! We've heard of some folks falling suspiciously ill after getting the H1N1 vaccine--similar phenomenon as with the seasonal flu shot--but my three seem to be a-okay. Just don't tell the babies that they're going to need a second H1N1 vaccine in 28 days. They still cry and point to their band-aids and tell me that the doctor gave them an owie. Tee hee. Chris and I still have to get ours, but we're lower "priority" until the county health department gets more in stock.

We went to Boo At the Zoo today. It was hot! And crowded! But still fun.

Friday, October 23, 2009

Friday Check-in

1. We can't buy the house which I previously mentioned. Due to certain mortgage restrictions on "flipped" houses, we can't purchase this house until after 12/21, so if it's available at that time and we haven't found something better, we'll give it another try. And I won't talk about the Great House Hunt anymore, because I'm tired of jinxing it! Also because it's boring to you.

2. We're going to attempt to get the kids their required H1N1 vaccines tomorrow at a public clinic. Wish us luck!

3. Kyle got a sense of humor. Sort of.

4. Lauren takes the stage, in perfect key. Sort of.

(if you're reading this in Facebook, you'll have to view the original post to see this video, I think)

Saturday, October 17, 2009

Took Jenna on her first ferris wheel tonight

5 hours later, I am *almost* recovered.

She freaking LOVED the ferris wheel. Me? I am afraid of heights. Also? I am particularly afraid of ferris wheels. "Mom, let go of my hand! My hands are tiny! And you're squeezing them too hard!"

Thank heavens the operator didn't leave us at the very tiptop while he let everyone else get off. We were the first off. I'm sure the fact that my eyes were squeezed shut while I chanted during the entire 12,000 hour ride had nothing to do with it.


It was a church carnival. It was fun. If by "fun", you mean 101 degrees F and dusty and expensive.....

Friday, October 16, 2009

Amazon and House Hunting (but not house hunting on Amazon)

I love it when Amazon does their Wish List Sweepstakes. I don't think they did it last year, but they have brought it back this year! Go to Amazon and create your Wish List to be automatically entered to win, among other things, a dream kitchen, Kindle, or a trip to Disney. Everytime you add something to your wish list you are entered into that week's contest again. I frequent Amazon regularly, and I almost missed this contest, and so wanted to share. My whole family has a wish list on Amazon, for anyone desperate to send us gifts...

We're buying a new house! We've been searching for months for a house to meet our unique needs--enough bedrooms for three kids to each have their own, no interior steps, and an open floor plan to better allow for wee ones on power wheelchairs to zoom around. And also? We don't have half a million dollars to spend. We found a home to meet all these needs, with the added bonuses that it's 3 minutes away from my parents' house and also is near an elementary school where another SMA family sends their daughter who is also in a powerchair, so our trail is already blazed at that school. We have the home inspection today, and we close next month if all goes well. I'm trying to convince hubby that we need to be totally moved in by Christmas! That's not impossible, but we have some projects planned for the new house that we need to do before moving in, so we'll see.

We're so psyched! Closing day can't come fast enough!

Thursday, October 8, 2009

We've come a long way, baby!

The boy who previously liked to use the powerchair as a ramming machine is now a civilized, obedient, ball-throwing member of society. Woo hoo!

If you're reading this on Facebook, then the video won't come through (I don't think so, anyway), so go to my blog or to You Tube to view it directly.

That's our physical therapist, Gayle. Also, no update on the status of the insurance appeal for the wheelchair. They're still declined based on the twins' age and perceived ability.

Monday, October 5, 2009

RIP, Stephanie Wike Sammis

I adored and looked up to you as a child. I envied you as an adult. I mourn the loss of your life to cervical cancer this week. RIP, old friend. May God bless your family in this difficult time.

Sunday, October 4, 2009

Happy October

What a fabulous start to October in Phoenix. First and foremost, pink is my favorite color (my middle name is Pinkalicious) (bonus points if you "get" that), and October brings all things pink to every store in America. I hate breast cancer (my Granny is a breast cancer survivor), but I adore pink, so I embrace October for that.

Secondly, this weather has been amazing. I swear, it was one week ago and the high temps were 108 degrees F. Today, I'm not sure it even reached 90 degrees. It has been bliss. The weather has caused us to remember that we have a backyard! And a swing set! And sandbox! What a thrill. The TV has been off more than usual lately, while we frolic in our patch of paradise outside.

Lastly, we sent off all our fundraising letters for the AZ Walk N Roll To Cure SMA over the weekend, and wait patiently for the money to start rolling in. I can't wait to turn in thousands of dollars in donations at the Walk next month!

Mini updates on all of us:
Chris--birthday is approaching next month. Home Depot gift cards would be appropriate gifts.
Me--planning The 2009 Family Christmas Card Photo. With three kids, I gotta start early, people.
Jenna--starts an after school cheerleading "class" this week. It will undoubtedly will be fun for her. No idea when Daisy Scouts will start, but the cookies better show up by February, damnit.
Lauren--my night owl. And an unwelcome one. It's 10pm; Go to sleep, child!
Kyle--my early bird (Byrd). Super early. But at least he's cute.

Kyle helped me with laundry folding today. He's so helpful.

Thursday, October 1, 2009

Estate Planning, Testicle Surgery, and Fundraising--Oh, My!

Chris and I finally finished our business with an estate planner. I never knew that planning for death was so complicated--and yes, that statement sounds ridiculous to me now that we've been through the process. Oh, how naive we once were. Let's just say that if YOU ever plan on leaving me in anything in your will, leave it to the Byrd Family Trust, and if you ever plan on leaving anything to my children, leave it to the Special Needs Trust for Kyle & Lauren (or Jenna, by herself). Because the income and tax ramifications if you don't use that terminology are brutal. We paid thousands of dollars to our beloved estate planning attorney, so please please don't leave any valuable figurines or expensive season tickets to us directly. I implore you. Actually, what we've learned is that the babies aren't allowed to have any income, in order to continue getting their medical services paid for by the government. So their Special Needs Trust was created so that we have someplace to put random gifts--like $20 checks for their birthday, etc--in an account where they can still benefit from gifts but won't be penalized for them. It's all very tricky, but totally legal, don't worry. Our estate planner is located around central Phoenix I'd refer him to any friend.

If you recall from a previous post, Kyle has some undescended testicles which need tending to. As luck would have it, the surgeon does not have any spot open on his calendar until the end of November, so to avoid flu and RSV season, we've planned the procedure for April 2010. It's going to be scary, but I promise to be a brave little soldier through it all.

Lastly, we've registered our family for the Arizona Walk-N-Roll to Cure SMA. All proceeds benefit the Families of SMA (FSMA), who has given millions of dollars in research grants. If you can spare a few bucks, drop them here: It's all tax deductible, and you can count on me pimping this cause until the Walk on 11/22. LET'S CURE SMA ALREADY, PEOPLE! Word.

What we've been doing these days: