A letter to Lloyd and Levitan

I LOVE the TV show Modern Family. Pretty shamelessly, too. The writing is fantastic, the acting is great, I love the high jinx. Most of all, I love that the Modern Family is portrayed as individual core units, but also as an extended family, multigenerational, and best of all, diverse.

The Modern Family of TV fame includes almost all major "diversity" populations. There is a homosexual couple, with an adopted Vietnamese daughter. There is a guy who probably fought in Vietnam with a Colombian trophy wife...and her roly-poly (read: obese) son. His step-sister,mwho is forty, doesn't seem like she could identify a cookie in a line-up, she's so thin. There's a goofy dad, an uber-achieving high school freshman, the list goes on.

But you know what they don't have (yet)? A person with any perceivable disability. Despite the fact that there are however many people in this country with disabilities, Modern Family has bypassed this segment of the population. It is an untapped resource as far as viewership and accompanying advertising dollars. (Also they have no South Asian/Indian/Middle Eastern character, also a surprisingly untapped resource. I thought they had no black character, but then I remembered they have the next door neighbor who was introduced earlier this season in a way that said, "I'll be recurring.")

Anyway...I bring this up because the gay couple is looking to adopt a brother for their little girl. This is Lloyd and Levitan's big chance. What better way to introduce someone with a disability to the Modern Family than by adopting a child with Down syndrome, or some other disability? What a phenomenal way to bring light to people with disabilities and all the great reasons to adopt one!

For that matter, maybe they adopt a kid with an autism spectrum disorder? Children in the US have a 1/133 likelihood of carrying that diagnosis. They could even get twice the bang for the buck and make him Egyptian or something.

Maybe I'm reaching. Maybe L&L don't think they could handle the character with enough tact in a comedy show. I have confidence in their writing...I'd love to see them try.

Merry Christmas and a big Shout-Out

First and foremost, Merry Christmas, Happy Chanukah, Happy (belated) Solstice, and Happy Sunday! I hope everyone enjoyed some great time with their family today! (biological, adopted, or homemade family)

I want to talk a minute about homemade family. This time last year, we were 23 days off the birth of our on, about 18 days off our T21 diagnosis, and on our fourth day adjusting to parenthood at home, outside the NICU. Needless to say, a proper celebration of Christmas was far from our minds. We managed to get a few ornaments thrown on the tree, and made it to church with Sam in Christmas pajamas. We had no family within 500 miles besides each other. Then our dear friends (about to become so much dearer) Michelle and Joe stepped in.

They brought us a fully prepared Christmas dinner of salad, lasagna (Michelle's grandparents were born in Italy so this was no mere baked pasta casserole) and peanut blossom cookies for dessert. They shared Christmas dinner with us and helped us all feel loved, and most of all, normal. At a time when nothing felt normal. I could never express how much I appreciate that act of kindness, at the same time so simple and so extreme.

I have decided that we will honor Michelle and Joe by having lasagna for Christmas dinner every year. And if we ever have the opportunity to return the favor, we certainly will.

525,600 minutes

525,600 minutes

525,000 moments so dear

525,600 minutes

How do you measure a year?

In daylights? In sunsets?

In midnights? In cups of coffee?

In inches? In miles?

In laughter, in strife?

525,600 minutes

How do you measure a year in the life?

Measure in Love...Seasons of Love.

525,600 minutes

525,000 journeys to plan

525,600 minutes

How do you measure the life of a woman or a man?

In truths that she learned, or in times that he cried?

It's time now to sing out though the story never ends

Let's celebrate, remember a year in the life...

Remember the Love...Seasons of Love.

525,600 minutes ago, Samuel Alexander entered the world. What a Season of Love it has been.

Happy Birthday, Sweet Sam!

Serendipity

Interesting day we had a few Sundays ago. Upon trying to get to church (which we always run late), we were greeted with a gridlock back-up on I-40. Some guy up ahead got out of his truck, walked up the highway, walked back, and started point to everyone to turn around (on the major highway) to take a detour. I am not positive what the cause was even now, but I think it was a power line fix.

Neither here nor there, because this strange turn of events led us to attend a church that we don't normally go to. It is downtown, in a semi-shady area. We are happy at our on-campus Catholic Center church. But we went to this one today since we missed Mass.

We walked in, and took a seat in the third row from the back. I could tell in the pew right behind us were three tween girls, but didn't see who was sitting in the very back row. All I knew is that she was having a hard time with the new songs for the mass...a trait which I share with her. (They were the same for centuries and now they are being changed. I am having trouble getting on board this new train.) When it came time for the sign of peace, I shook hands with the tweens and then looked up to who sat in the row behind. There was Angel.

We shook hands and said "peace be with you." I then saw Angel's mother, who smiled and waved--it would have been quite a long reach as I was holding Sam and they were two rows behind. But her smile was a hearty and warm one. It was the minestrone of smiles. :-)

When she passed our pew to receive communion, Angel's mom winked at me. It melted my heart and I actually teared up. I was really glad that we went to this unusual church, at the expense even of seeing Father Eric, the former pastor of our usual church who has gone on to work as a pastor and Catholic film producer in LA.

After Mass, we smiled at each other again, and Angel gave a little wave. We were walking to our car, when we heard a loud "Yoo Hoo!!?!?!" from across the street. Here came Angel and her mom, putting in major effort to reach us before we drove off. And how sweet they were!!

Angel's mom, Gladys, walked up and said to me, "I think we have something in common, you and I." She proceeded to introduce herself and then her daughter followed suit. Her beautiful 23 year old daughter, Angel, has Down syndrome. She asked how old Sam was, and then just smiled and said, "you all have such a beautiful life ahead of you!" She went on about how great her life, and especially Angel's life, is. She talked about dance classes, and "girls' night in," and bowling. Angel told us she had a friend named Sam, and told us our Sam was cute. Gladys told us if we ever needed help, or a break, to let us know; that it is sometimes hard but always worth it. Then she and Angel said they hoped to see us again, and have a good week.

Yes. Angel, indeed.

Sam's Guardian Angel/My Two Biggest Fears

When Sam was in the NICU, his room was right by an automatic door, and by his sink was a motion sensor paper towel dispenser. It was not uncommon for either to spontaneously trigger, despite no motion nearby. One day early on in Sam's life, I remember telling Hubby that it was a ghost. He told me he liked to think it was Sam's guardian angel. Once he said that, I knew her face immediately. I saw her quite a bit in Sam's face, actually. His long lashes, his cupid's bow mouth. The way he slept with his fist tucked under his tiny chin.

The way I wanted him to be out of the ICU and home with his family.

"Grandma Ro will keep you safe tonight, Sam."

When I started this post, it was the 11th anniversary of the day my mother died. A day that left a lot of collateral damage with me. A day that stirred the biggest fear in my heart.

To say we had a turbulent relationship would be an understatement. This was true before she was sick, when I just wanted her to be a "normal mom" instead of always going back and forth between trying to be cool so she could stay close to me and my friends, and being a fierce Mama Bear warrior woman who would take down anyone who crossed me. She was the mom who fought with the principal of my school, and when he thought he had won, took our case to the school committee directly. The mom who embarrassed her only child so much that I wanted to crawl in a hole...regularly. The mom who planned parties meticulously that my friends wouldn't attend because they just found her to be too much. The mom who wouldn't show up to see me receive Senior awards because I wouldn't wear my hair the way she wanted me to.

She got sick during the summer between graduation and freshman year. She was in and out of hospital and doctor offices, never getting a full work up for the pounds and pounds of fluid weight she had gained. No one believes a woman went from 350 to 400 pounds over a couple of months because of fluid weight...it's just her out of control eating habits and laziness.

She died two months into my sophomore year, and the year and a half between were excruciating. Her mind left her body long before her spirit did. Having lots of professional experience with delirium, I now know that this stole my mother away long before she died. She was verbally abusive because of her illness, and I try to forgive but still can't forget.

My mom embodies my two greatest fears for myself as a mother. I so fear being too much like her, and being not enough like her.

I am not the outspoken, fiercely defiant mother who will do anything to protect or gain advantage for her child. It's not in my personality. Yet, I am slowly learning that children with special needs require this type of parent...one who will advocate and push until they get what they need for their child. It means bucking the system and questioning the status quo. It means doing and saying things that are uncomfortable. It means putting your child's need ahead of your own need to be liked, loved, respected, or revered. It is the top priority. It is trusting the mama instincts that I'm still not quite sure I possess. I need to embrace that part of my mother's spirit, for Sam's sake. I fear that I will not embrace these qualities enough, or in good enough time to really make a difference.

At the same time, I completely fear failing health, like my mother had. I, like her, have a weight problem. I am obese, and lazy. I love to eat and hate to move. I make plenty of excuses to do lots of one and none of the other. I see myself walking in those shoes my mother left to me, and putting my health at risk. I envision leaving this earth while Sam still needs me, and it is terrifying. I know I cannot do this to him, and am trying to use this as motivation to change. So far it's not working. But I start every day reminding myself that he won't be rid of me so easily.

I did not know the joy of my mom zipping me into my wedding dress, or having her blow the air horn when my name was called to receive my degree (as she told me she would during my childhood). I never got to enjoy the change in the mother-child relationship that signifies passage to adulthood. I never got to tell her I was pregnant or ask her what it was like to carry me inside her. I want to be round to celebrate Sam's achievements, right on into adulthood. If I am to do that, I need to face both my fear of being too much like, and not enough like, his guardian angel.

Health is Wealth

Here I go, apologizing again. I've had a few distractions from posting; namely, my 10 month old and his killer laugh. :-D There have been many days when I just couldn't peel myself away long enough to make a blog post. I know you'll all forgive me, especially those for whom an entire blog post about a breast pump is just incomprehensible.

Anyway, I am just dedicating this post to gratitude for Sam's fantastic health. I mean, he has gotten a few ear and sinus infections...but he goes to day care. Those toys are like little Petri dishes, and all the kids lick them. How could he avoid illness altogether? I didn't go to day care and had more ear infections by 10 months than he has had. (Looks like the breast pump has earned a whole blog post!)

Down syndrome can be accompanied by a higher risk of all kinds of health problems: cardiac abnormalities at birth, hearing and visual impairments, duodenal atresia, Hirschsprung disease, infantile spasms, and leukemia (just to name a few). Sam did have some heart problems at birth that are now resolved without surgery. But to have our biggest problem right now be spitting up and a perpetually runny nose? We are so blessed!

The odds, however, are stacked against Sam's being healthy forever. The likelihood of his ending up with *some* medical disorder are overwhelming. Autism occurs in 10-15% of children with DS. Infantile spasm/seizure rates are about the same. Half of people with DS have a cardiac abnormality. Early onset dementia is almost a given. How long can we stave off illness, and when it comes, which will it be? The chances that Sam will not be affected by any major health issue, seem extremely slim.

All I can do for today is thank God for what he's already blessed us with, continue to pray for Sam's good health (and my own), and be vigilant for any possible issues. But the waiting is just so hard.

The Way I See It: Wordless Wednesday

Lookin' out my Back Door...

31 for 21: Mass post. Celebrating Down syndrome

Okay, I've been deficient. I'm hoping to catch up, but I don't want it to be anything like this obscure song by Ben Folds (whom I happen to love, and love the song too...beware of curses if you watch the video)

Now on to the task at hand: Celebrating Down syndrome.

Ten months ago, I never would have thought I could do this. I'm pretty stoked that I can even type those words without wanting to cry or throw my laptop at the wall. There are many things that I don't celebrate about DS, but that's not what today is for.

I celebrate DS for two major reasons. The first is the community of families that you are immediately embraced into when you have a child with DS. We don't all agree on everything...some of us don't ever agree on ANYTHING. But we are all linked together with this common bond of an extra chromosome. We recognize each other at the grocery store, or at Cracker Barrel (shoutout to Bill, who will get his own post sometime in the future). We have offers of "call me any time, I'm happy to answer your questions" and better yet we take up those offers. Even at 10:30pm when the baby won't eat and we don't know what to do (Thanks, Kyle).

The DS community is especially important to our family. We live about 14 hours driving away from any of our relatives, including grandparents, and not much closer to any of our closest friends. Sure we have friends where we live, co-workers and fellow parishoners. Our circles are small, yet not particularly close-knit. The outpouring of support for us by those we know has been great (we had meal deliveries at least twice a week for the first 6 weeks or so of Sam's life, including a Christmas lasagna feast!), but it doesn't take the place of true family, or those friends who know our hearts so well that we call them brothers or sisters anyway. Only one of our friends has a child with any special needs (and this discovered after Sam was born), so having the DS community to support us through our early days was so important. Now that we are right in the thick of it and in a position to start supporting other families, I can say that we have true friends in the DS community too. They live about 7 minutes from us, but I doubt we would have ever become friends if not for both our babies having DS.

The second reason I celebrate DS, which is much more personal, is the very early parenting lesson it taught me: One cannot control the course of her child's life, nor should she try to pin her own self-worth to the value the world places on her child.

While I was pregnant, I read this and thought "Oh, how sad." But the more I thought about it, the more I considered that I would definitely want my child to be advanced in every way. My husband and I are both health care providers, with doctorates. Members of honor societies, dean's lists, and numerous extra-curricular activities both in high school and in college. I expected our child to be this way as well; I bought classical music CD's and books about teaching a child a foreign language, hoping the little kicker would be learning his third or fourth by the time he reached high school. I researched 529 plans, assuming our child would be headed for the Ivy League. Before he was even born, I had made all these projections onto his life based on what I wanted for my own life. I assumed that our baby, who had yet to stop swimming in amniotic fluid, would hit the ground running, collecting accolades all the way to Stockholm.

I am happy to announce that I am much less a mompetitor now. I say "much less" rather than "not" because I am trying to keep honest. But the truth is, the competitive streak still exists. I feel like we are in constant competition with the lists of developmental milestones that our doctors and therapists give us. I am also a little competitive with other parents (mostly ones whose children have DS, but a couple of typical kids as well), and love to hear that Sam has achieved something before another child his age. I take it hard when we don't meet a milestone on time, and I am especially fearful of falling behind even the average child with DS. I am hoping that staying home with Sam will let us work with him more than the hour or so per day he was getting before. I am much more accepting of Sam's God-given strengths and weaknesses, too.

Although I feel the need to compare to other kids, I know that checking my mompetitive streak is something that I will bring with me into the future parenting adventures that I hope to have. My future kids will have Sam's 47th chromosome to thank.

Mooo

I just got a new breast pump in the mail. I got about this excited when it arrived.

Reading that first line back makes me laugh. I didn't think I would ever be celebrating a breast pump. Now don't get me wrong...a big part of why I am celebrating is that I will most definitely get to give the old one the grand farewell it deserves by running it over with the minivan, or throwing it off the roof, Letterman style. This will bring me limitless, if fleeting, joy.

Sam, my breasts and I had a pretty rough start, with lots of set-ups for failure. We had no immediate skin-to-skin time after birth, no chance to nurse, no room-in, no lactation consultant. Sam got wheeled down to the NICU and I stayed behind. Pretty soon thereafter, I went home while Sam stayed behind. Sam's low tone made his suck weak, and he could not even get his bottles down. His NICU stay was largely based on his inability to eat enough for the doctors to be confident that he would gain weight. *We could have worked on nursing in the NICU until he proved he was getting enough, or we could give him his milk via bottles and go home. We chose home.*

And so it was that my love-hate relationship with my pump was born, eight hours after Sam was born.

I knew that breast milk was the best for any baby, and Sam was no exception. I read about all the specific benefits breast milk, and nursing specifically, has for a baby with Down syndrome. I read about the tiny ear canals and possible infections, I read about energy draining heart conditions, I read about constipation, and I learned about how breast milk could help with all of them. So I pumped milk, and fed Sam with a bottle. We tried nursing, but with little idea of how much success he was having. We rented a scale from the NICU to gauge it better, but after several attempts where he weighed less after nursing for 30 minutes, I was sure this wasn't the way. I had many times that I wanted to quit in those early days, especially as I spent so much time pumping and so little time enjoying Sam.

We finally saw a lactation consultant at a local birthing center, who was wonderful. She told us she had faith that Sam could nurse exclusively (the first to tell us this!) and gave us some tips to encourage us both. After that we made good progress, with Sam nursing several times per day, but never getting enough to go without a bottle. The feeling of actually nursing my baby, however little, was one of the most fantastic feelings in the world. Given the circumstances, I was proud of what we had accomplished. But the pump was and still is a huge part of our life. It has been more than 10 months now, and I am still at it. I think back to 6 week postpartum me, and want to pat her on the back and thank her for not giving up on our nursing relationship.

A wise mommy told me "Nursing is a labor of love, and pumping is no exception." I would say pumping is doubly so, as it lacks the instant gratification of the incredible feeling of love and warmth that rushes over the nursing mother. The rewards are there, but harder to find, and more long-term. Still, I cling to my love and its labor.

*I have stolen these words from a friend who just brought home her twins from a NICU stay.

Buddy Walk recap and photos!

Before the pics...did anyone see Pudge and Biggs most recent post?? *sobs*

Another aside: the next post in the story of our journey so far is the early NICU/diagnosis story. I'm not intentionally trying to put off thinking about that or anything...

Now for the good stuff:

This was our first Buddy Walk and I wasn't sure how I would handle it. I haven't spent a lot of time around adults or older kids w/ DS, except for a girl named Mary whom I worked with at Shaw's Supermarket back in high school. That was obviously waaaay before I had any reason to really think about Mary as being my future. We're also not the most social creatures in the G household (except for Sam...he'll make friends with anyone), so I was a little worried we would just be wandering around aimlessly.

I was wrong! We stopped by the new family tent, and saw our friend Harper. (Sometimes we call her Sam's girlfriend...and he would be SO lucky for this to be true!) Harper's mommy gave him a "Harper's Heroes" sticker, which he proudly wore on his stroller strap.

Then we saw our EI coordinator, Jackie, who brought us to meet her daughters, Olivia and Natalie. Olivia is 12 and has Down syndrome. She LOVES babies, and pretty much kidnapped Sam as soon as we met her. Lucky for us, she didn't get far. We know Sam would be in excellent hands, but we would miss him terribly. Natalie was running a "Spread the Word to End the Word" tent, as I mentioned in my recent Confession. I was so happy to finally meet Jackie's girls after hearing so much about them. I got a sticker for that too, which Sam proudly sported throughout the day on his other stroller strap.

We got to hang out with Stephanie, a friend of mine from the hospital where I used to work. One year ago she adopted two boys from Ukraine through Reece's Rainbow, and she is already working on her third paper pregnancy! She's also a nurse practitioner and mom to two biological teenage children. My husband asked if she had an unlimited supply of energy. (I thought he was going to say "money.") She and her family, including her two Ukrainian princes, Cole and Caden, were at the Reece's Rainbow tent.

Before long it was time to start the walk. We walked our lap around World's Fair Park with Team Harper (Daddy pushed the stroller, I took the photos.)

When we were done, Sam got to go across the stage to get his medal. Daddy took him to do that, too.

I have mixed feelings about the guy giving out the medals (no, not Mr.

Brickey). I mean, his House is awesome, especially for the families whose babies have heart surgery. I have a friend whose family lived there for an entire year while her brother had a bone marrow transplant. I just wish he weren't playing such a big role in childhood obesity.

After that, we saw our other two friends, Elly (aka Gorgeous) and Liam with their Mommies.

What a great day!

Confession

I have a big confession to make about the R-word. But it's not (exactly) what you think.

I believe the words "retard" and "retarded" are hurtful, and they undermine the humanity and the abilities of people with cognitive disabilities.

I put those words out of my vocabulary a long time ago. They just didn't have any place in my life. I wanted to be politically correct, and those words are most certainly NOT PC. But I also didn't feel all that strongly about others using those words. I felt it was tasteless, and crass. But I believe in freedom of speech and didn't think I could tell anyone using that word was wrong.

Then I had Sam. And the more I got around others whose children had Down syndrome or other impairments, the more I understood how hurtful those words are.

But a REALLY strange thing happened at the same time. I started thinking those words. Regularly. Someone would tell me about a new process at work that was a waste of time, and my thought would be, "That's retarded." These words that I had sworn off so long ago made a comeback. I have been able to censor myself well enough not to ever have said the word, but I have thought it. And to me, that's almost as bad, if not worse.

I feel almost hypocritical telling others that using that word is wrong, when I seem to have resurrected it from the depths of my own memory. It is as if trying to fight use of those words has brought them back to the forefront of my mind. I am ashamed that I waste even one brain cell on these words that are so insulting to one of the people I love the most in this world.

I signed a banner today at the Buddy Walk that our EI coordinator's daughter, Natalie, put together. In signing that banner, I pledged to "end the R-word." I hope and pray that I can end it in my own mind.

It's Buddy Walk Day!!

I'm teeing today's post up early because today will be our first family Buddy Walk adventure!! It is supposed to be beautiful today, with warmth and plenty of sunshine all around.

I hear the weather is going to be pretty nice, too. :-)

Sam's Big Day: Our Unusual Birth Story

I spent a good part of my pregnancy reading the book What to Expect When You're Expecting. I have since found that, for me, that book had NO IDEA what I should expect when I was expecting (nowhere did it mention choroid plexus cysts, inverted S:D ratios, or Giant Tools). Still, I thought I would at least be able to rely on it for the usual pregnancy and baby facts that a first time mom with few female support resources might require. It told me all about how Kegel exercises are good, and how soft cheese is bad. But it really failed me in the labor and delivery department.

I tried so hard to prepare myself for what labor and birth would be like, but could never find a good answer to my eternal question, "How will I know I am in labor?" The answer I found in every source, including communication with friends who were moms, was exactly the same: "You'll just know." I spent all manner of time worrying about this. What does that mean? HOW will I know? Can't anyone tell me? Hubby told me, sounding very doula-like, to trust my body and my instincts.

When anyone tells me to trust my gut, I like to reply with my favorite line from the movie High Fidelity: I don't trust my gut. My gut's got shit for brains!

Never has that line been so well-deserved.

On November 30, I worked my last full day at the hospital. On December 1, I had a routine weekly check-up with Dr. Teddy Bear's nurse practitioner. Even though I was just 7 days from my due date, she had not actually checked me for dilation/effacement up to that point. My co-workers at the hospital were actually pretty shocked, but I hadn't reported any contractions. This time, she decided to have the nurse check me anyway. The nurse asked me if this was really my first baby, because it seemed like I had had one before. Then she announced that I was already between 4-5 cm dilated!

I burst into tears at the thought of them putting me in a wheelchair and rolling me down to L&D right then and there. Neither she nor Hubby really understood what that was about. I don't understand their surprise.

I thought I had another week. I was not ready for this. The bags were packed, but at home. I was dressed and ready to go to work in my office at the college next door. NOT ready to go have a baby. And I was SO EMBARRASSED that despite my best efforts to educate myself, I had no frickin' clue I had progressed that far. She called me the "Mack Momma" for not even noticing that I was halfway dilated already. (This made me laugh as I usually curse in pain when I stub my toe.) As it turned out, L&D was full, so they sent me home with a plan to go back in at midnight. Since I was already dressed, we left the appointment and went to work. I got nothing done, but I showed up, so I didn't have to waste a day of FMLA.

Hubby and I went home that evening and packed up the last minute stuff. We let our parents and close friends know we were headed to the hospital. We called Fr. Charlie, who said he would come to the hospital and baptize Sam right away if we needed him to before surgery. I packed a pure white blanket to wrap Sam up with in case of a hospital baptism.

I checked in, disappointed that Hubby wasn't allowed in the room right away, and that the carefully selected clothing I had chosen for labor comfort were quickly set aside in favor of a backless hospital gown. They hooked me up to the monitor, and asked me if I wanted an epidural when the time came. The "early and often" approach to epidurals was my mantra. I am a pharmacist, after all...I believe in the healing power of drugs.

The OBGYN resident on that evening checked on me periodically, but explained that her goal was actually to "keep me pregnant" for as long as possible, to avoid a NICU transfer and neonatal echo during off-hours. Hubby got some rest, and I watched silly movies to pass the time. For a while I listened to the iPod playlist I had painstakingly put together for relaxation, but not as much as I thought. I still wasn't in any pain. When I progressed to about 6 or 7, and things started picking up again in L&D, my nurse came in and said "If you still want an epidural, I think we should consult the anesthesiologist now. He is going to get busy here in a bit." The anesthesiologist was actually a resident, a smallish guy with dark hair and blue eyes. After he left, Hubby and I laughed and laughed because his name, like his face, was strikingly similar to the character Zach Braff played on Scrubs.

At about 8 in the morning, the overnight OBGYN resident thanked me for staying pregnant all night, and turned on Pitocin to move things along before leaving. My husband saw Dr. Teddy Bear out in the hall when I was about 9 cm, and as Dr. Teddy ran by he just waved and said, "It's baby time in Tennessee!" I languished at 10 cm and fully effaced for a while because he was off delivering another baby. As long as I felt no pressing need to push, they were going to let me wait as long as possible.

At around 12:45, they came to tell me they were taking me to the OR to deliver. They weren't expecting to do any surgery, but they would have all sorts of staff and equipment on hand in case Sam needed it, and the OR would accommodate it better than the L&D room. They gave Hubby scrubs to put on and away we went. When we got to the OR there were not many people around. An OBGYN resident who goes to our church walked in (!) then realized he was in the wrong room and walked out (whew!). Nurses started filing in from what seemed like everywhere...Sam was going to get quite the hero's welcome!

Dr. Teddy Bear and his intern, Dr. O came in to deliver Sam. I started pushing a few minutes after 1pm. I thought to myself, maybe he will be born at 1:31 pm, like I was. Not even close.

Samuel Alexander drew his first breath of fresh air at 1:13 pm on December 2, 2010. He weighed 7 pounds and 10 ounces, and was 21 inches long. They called Hubby to cut the cord, and then Dr. O announced that Sam had cut his own cord (we still don't know what that meant exactly). I stayed pretty calm, just trying to get a look at him. They took him away to clean him up. I asked Hubby, "Ten and ten?" which he confirmed, telling me his feet looked comically big, but that he was beautiful. I remember everyone telling me that, but wanting to see it for myself. By the time I got to see him, he was already cleaned up and swaddled, with a hat on. I got to hold him for just a minute, crying the whole time of course, so relieved to see his beautiful face. Before I knew it, they were taking him away to the NICU, and I was crying even more. I held him for 39 weeks, that moment just didn't seem the right time to let him go.

Sam's Growth Within, Part 5: Groove is in the Heart

After our repeat visit to high-risk OB, Dr. Teddy Bear decided to send us to a pediatric cardiologist to get a better idea of what was happening with Sam's heart. At no time did Dr. Teddy Bear tell me "Our picture of your baby is getting clearer and with a heart condition it looks like he has Down syndrome." There are moments when I am angry about that, but overall I think it was a good thing. There are two pediatric cardiology groups in the area, and they chose to send us to Dr. Liske. I have no problem using his name in this blog because I have absolutely nothing bad to say about him or anyone working with or for him.

In my world, Dr. Liske is a rock star. He is an absolute sweetheart, well-trained and published. He used to work at Vanderbilt, one of the premier pediatric heart centers in the Southeast, but is as humble about it as they come.

At our first visit, Dr. Liske explained that he would be performing an echocardiogram on Sam, to try to get a clearer picture of his heart than a typical ultrasound. He also explained that he doesn't talk much during the echo...he needs to think and he doesn't talk or think well when he's trying to do both simultaneously. (I immediately felt more comfortable with him...he warned me in advance because he knew it would make me nervous that he wasn't saying anything! He also said he liked to think, which put him above at least one doctor we had seen recently.) There I was again, "jelly belly," lying down while he zeroed in on Sam, and then on Sam's tiny little heart. This echo felt like it took forever, made worse by the fact that my leg kept going numb and I had to move, messing up his view. After what seemed like a million years, he announced that Sam had been a very good boy for his "closeup" and we were all done. Here we go...

Dr. Liske pulled out a photocopied diagram of the human heart, and started drawing and writing on it. I love that he gave us a picture so we would know exactly what he was talking about. He told us there were some things that he just couldn't see, that it was hard to get every possible angle. Sam had one side of the heart that was larger than the other, a possible narrowing of the aorta (CoA), and some smaller than average heart valves. Dr. Liske explained that this could be due to a few different causes, including a hole in his heart between the atria (ASD) or between the ventricles (VSD). He wanted to see us back in a month (which would be in October), and then would not see us in November before Sam's birth in early December.

He told us he loved Sam's name because his son is also named Sam! This is just meant to be. :-)

At our October visit, what he saw was more or less the same. It was at this point that he told us the news I was hoping not to hear: Sam would need to go to the NICU immediately after birth. So we would not be able to deliver at the hospital we had planned on, 5 minutes from the house with the original OB group and beautiful new birthing suites. We would have to deliver at the teaching hospital. With residents and potentially students present. Lots of people, some of whom my husband works with, looking at my hoo-hah. Fabulous. (And in case you missed it with all my petty whining about my hoo-hah on display, the baby being rushed to intensive care immediately after birth.)


Dr. Liske said they might have to give medication to keep Sam's PDA (a hole in the heart present in babies until shortly after birth) open until he could have surgery. I am a pharmacist; those drugs do not scare me. He also told us he didn't think anyone here did the surgery with enough regularity to be excellent at it, so we would have to transfer to Vanderbilt. This scared me more. I could not imagine traveling to Nashville emergently in an ambulance with my brand new little guy strapped to a board, potentially only hours after giving birth. What about the bonding time? What about the healing process? How would we figure out nursing? In the end of course, this paled in comparison to the notion of my Sam having surgery by someone who wasn't an "old pro" at it. We were sent on our way with a whole new set of preparations to make; preparations that involved at least one new hospital, and perhaps a new city, in Sam's first few days of life.

31 for 21: Mass post. One thing I love about Down syndrome.

First, I want to thank my readers who have made comments privately or publicly about our story. It has been cathartic to compose it in words. It means a lot that it has touched anyone's heart.

Second, I want to apologize for not having pictures included with this entry. I had them planned out, but then the evening just got away from me.

Third, I am taking a short break from the pregnancy story today, to post on a shared topic that many of those participating in 31 for 21 will post on today. This will occur every Thursday this month.

Today's post: One thing I love about Down syndrome

The truth is that I don’t love anything about DS, except for my child, and the other people in this world who have been inextricably linked to it by their extra chromosome. Maybe someday I will be happy that Sam has DS, but I’m not there yet.

I could say I love his eyes, with their little tiny epicanthal folds. I could say I love his feet, with the sandal gap (even though my hubby wouldn’t let me buy him shib-shib—Arabic for flip-flops--to go in the gaps). I could say I love how sweet and loving and happy he is, how he is so enamored with people and their faces. I could say it was amazing having a baby who would sleep through the night since day one. But I will not say that I love anything about Down syndrome.

Those things are not Down syndrome…they are SAM. Every last one. He comes by them honestly, too…regardless of his chromosome count. Do I love his almond-shaped eyes? They remind me of my own, but with longer eye lashes.

Do I love his sandal gap toes? The gaps that aren’t quite as big as his Daddy’s?

Or his pectus excavatum—the sunken-in chest that he also shares with Daddy (but that Daddy wouldn't let me take a picture of)?

Do I love his sunny disposition, how he rarely cries or fusses? He really is such a happy baby…

Except when he’s not.

Do I love having a baby who sleeps through the night? He gained weight just fine those first five months since we set an alarm to wake him for a 3 am bottle.

Do I love how he engages so readily with people? How he is so loving and “social?”

Of course I do! I love all these things. How could I not love them? They make Sam himself. But, he could have all these traits without having Down syndrome, and I resent the implication that he would be anyone other than himself with only 46 chromosomes.

More than that, I resent the idea that Sam is his Down syndrome, or will ever be defined by it in any way. I patently despise the idea that he is, or will ever be, one-dimensional.

“He’s always so happy” is a dagger to my heart. He loves to flash his “light up the room” smile, but it minimizes Sam’s humanity to think that he never has or will have another emotion.

I love that Sam is so social, highly motivated by faces and the reactions he receives from others. But it would be a lie of omission not to also address my fears about his being used and abused, taken advantage of, or patronized because of his desire to please and gain approval. I want people to know and love Sam for Sam.

The idea that someone might dislike, mock, or devalue Sam because he has Down syndrome is a punch in the gut to me. But at the same time, the idea that someone might be superficially nice to Sam because he has Down syndrome is like a slap in the face. I want people to see him for who he is, just like I do. Who he is, is Samuel Alexander. Down syndrome is only 1/47^th of who he is…and he would still be Samuel Alexander without it. So I don’t have to love any part of Down syndrome. Loving the people who have it is enough.

Bonus Post!!! I AM more than Down Syndrome

Can I bank this in case I miss a day later in the month??

This video was created by Ilisa Ailts, a fellow mom of a child with Down syndrome. It features a lot of very beautiful children with DS who are showing off what they can do, and how cute they can be while doing it. There is a particularly handsome boy at the one minute mark...

I Am more than Down Syndrome

Enjoy!!

Sam's growth within, part 4: Coming around again

After one more visit to the high-risk OB, the cystic hygroma was shrinking, and the concern about fetal hydrops was starting to lift. They released us from the high-risk clinic back to my original OB! Hubby and I breathed a collective sigh of relief--maybe this wasn't going to be so bad. We picked up on preparations we had previously put on hold. We shopped for baby furniture and set up a registry. We went home to RI for my dad's wedding and told all the extended family about our pregnancy. We also chose a name for our little boy, who had previously been referred to as Tiny Dancer (since I was taking belly dancing lessons so he had no choice but to dance too), and Pele (like the soccer legend...because he was such a strong kicker). We decided to name him Samuel, which means "God has heard." We felt that God heard our prayers and kept Sam healthy. We also looked long and hard at the 3D images the U/S tech gave us, and decided that of the four boy names we had on our "short list" he was most definitely a Sam.

We went for the next OB appointment as scheduled, and they did another ultrasound to check on Sam. "I've got good news and bad news" she said. (Come on! Really?!?!?!) "The good news is that the hygroma hasn't grown again. The bad news is that the blood pressure in the umbilical cord is not appropriate. The ratio between the top and bottom numbers is too low." I had no idea that this could happen, or was a problem. She explained to me that it isn't a problem, YET. If the ratio continues to grow smaller it could actually invert, which means that no blood is flowing to the baby. (Imagine if your blood pressure, instead of being 130/80, was 80/130.) So guess where we were headed? Back to high-risk OB. (For someone who is healthy aside from a weight issue, no risky behaviors, and having very little in the way of pregnancy symptoms, this "high-risk" label was killing me.)

I consulted Dr. Google again. I should have learned my lesson from last time, but actually this time it helped. The major symptoms I found of this "altered S:D ratio" were growth restriction and inactivity. Was Sam having that? No, and HELL NO.

The following month we were back at high-risk. I don't know who (or maybe it is Who?) to thank for this, but this time we would be patients of Giant Tool's partner! I am going to call him Teddy Bear (his name is not Ted, but he looks like a teddy bear, and has a much more "huggable" personality). Our S:D ratio continued to improve, but given our history, Teddy Bear continued to order full U/S each time. The hygroma continued to look good, shrinking a little each time, and no organ involvement. They did notice, however, that Sam's little heart was a little different than most babies' hearts. Another day, another referral...

Looking back now, I see that God was watching out for us and especially for Sam throughout his pregnancy. When we pray that things will happen to show God's glory, this is what we are talking about. The first U/S tech thought she saw a CP cyst which was not there a week later. If she hadn't seen that, no referral to high-risk. No referral to high-risk would have meant no monthly U/S, no discovery of the umbilical cord issue, no referral BACK to high-risk, no discovery of the potential heart issue, no change in the birth plan (which you'll learn all about in the coming days). God is good...all the time. Even when we can't possibly see how.

Sam's growth within, part 3

The week between our U/S and our high risk OB appointment was excruciating for me. I just wanted to know what was happening with the little boy who already meant so much to me. As soon as I got home, I consulted Dr. Google, figuring “I’m an educated health care professional. I can wade through the BS and figure out what is happening with my baby.” WORST IDEA EVER. I woke up in the middle of the night once that week, and went into the nursery, and clutched the glo-worm that a co-worker had bought for us while I lay on the floor wailing. I immediately repented for every time I went out at night as a teenager and didn’t call my mother. I begged God to forgive me for calling my dad crazy when he left me four voicemails to make sure I was okay after a major disaster in the city where I went to college. I knew the anxiety and the love the accompanied being a parent now. I started crying daily in the shower just to let it out, because it was before Hubby woke up for work and I thought he couldn’t hear me. He could, and it even woke him up. But I couldn’t not cry. I was sure my baby had T13 or T18, which had a very low chance of survival to term, and even lower for survival past the 1 year mark. I asked myself which would be worse: a stillbirth, or losing a child in infancy? I never did give myself an answer. I cried instead.

I called the OB office for our quad screen results, and the dingbat medical assistant told me the following: “They’re normal.” And when I asked for specifics, she didn’t even know how to tell me anything else in a meaningful way. She just read out numbers, without units or interpretations. She said they would tell me at high-risk. Awesome, because I can’t think of anything I would rather do than wait to find out the results.

Hubby and I discussed, frequently, what the plan would be if they offered us the amniocentesis. I couldn’t decide if I was one of those moms who would rather be able to plan, or an “ignorance is bliss” type. I couldn’t get the risk of miscarriage with amniocentesis out of my head. I think deep down my husband really preferred to know, but he knew how riddled with guilt I would feel if I were to choose amniocentesis and then have a horrible outcome. So our united front response was, “no, thank you.”

We walked in as stealthily as possible to try to avoid seeing any colleagues. We were called back to an ultrasound room, where the technician squirted me with the wretched jelly and started the scan. She measured size, confirmed that he was a he and started focusing in on the head and neck. For what seemed like forever. Especially the head. When she was done, she printed some pictures for us and said she would send the doctor. A few minutes later, in walked the giant man that I will heretofore refer to as the Giant Tool. He was not alone. He introduced the genetic counselor, and I’m sure my face turned as white as a sheet. I knew it.

They said they did see the thickened nuchal fold again, but didn’t see the choroid plexus cysts that were picked up at the OB’s office. I immediately perked up—This is Good News! My original OB said if they only saw one and not the other, they wouldn’t be particularly concerned! Then I thought, “so why is She here??” The genetic counselor asked for my quad screen results, and read them looking puzzled. She handed them to Giant Tool, who looked quizzically back at her, and then at me. I told him we only just had the screen done the previous week if that made any difference, and he made some surprised comment about not having it done at the first appointment. The conversation went something like this (acting like we weren’t present at all):

Giant Tool (GT): “I think the baby has Down syndrome.”

Genetic Counselor (GC): “But the screen results are 1:4700, less than the general population.”

GT: “It’s just because of her age. Do you see how high that HCG is?”

GC: “You really think so? I don’t know. What about the long bones?”

GT: “Today’s U/S says they’re in the target range.”

GC: “I don’t think it’s Down syndrome.”

**me, in my head, while watching them talk like a cat watches a ping-pong game: why didn’t they have this conversation in his office before walking in here???**

GT started talking to Hubby and me again:

GT: I think you should have an amnio. It is the only way to know for sure, and we can do it today.

Me: No, thank you, we have no intention of terminating regardless of the result.

GT: You’ll have peace of mind, and you’ll be better off with time to prepare.

Me: We don’t feel comfortable with the risk of miscarriage.

GT: Well, the risk you read about is in the general population of providers. I do these every single day, and have for the past 15 years. The risk of miscarriage if I do it is about 1 in 10,000. And with your sac where it is, I would say even less than that. If we don’t do it today, we can’t do it again until 34 weeks. NOW LET’S SEE WHAT’S WRONG WITH YOUR BABY.

**screeeeeeeeeeeeeech…the whole world came to a grinding halt.**

Me: I don’t think so. What are our other options? **internal monologue: and what’s this I hear that you have a partner? Can we see him next time, instead??**

In the end we opted against the amnio, and decided instead to follow the baby with monthly appointments and U/S. We still had to see Giant Tool. The genetic counselor was nice enough. She explained what GT didn’t, including why they disagreed, and tried her best to cover for his rude behavior. She explained that the baby didn’t just have a little extra thickness of the nuchal fold, but actually a cystic hygroma, which could potentially progress to fetal hydrops (fetal heart failure, which could include fluid build-up surrounding the internal organs or other important tissues). She told us that it could get better, or get worse, and that if it got worse then he had an increased risk of dying before or shortly after birth. If it got better, it didn’t necessarily mean that he had a lower chance of having a chromosomal abnormality, just a lower chance of dying from the complication of fetal hydrops.

The one up-side, was that we got to see our baby every month. At the next appointment, the U/S tech was enthused to try a new technique she recently had learned at a conference: 3D U/S of the heart. For being her guinea pig, she gave me some 3D shots of his face. I slept with them under my pillow.

Sam's growth within, part 2: This is a Test...This is ONLY a Test

About twelve weeks after our first appointment with the OB, Hubby and I happily made the jaunt to the OB’s office…we were ready to see our baby!! We had been hearing good, strong heartbeats for two months already (I even gave the baby a pep talk before each appointment: “Come on, Baby. Make a big strong heartbeat for Momma”). Almost everything had been going great. There was that one tiny incident at around thirteen weeks…the one when I had a very mild bleeding episode and thought I might be losing the baby. The OB office calmed my fears, but this was a very harrowing experience for me. I have 7 siblings in heaven who never made it to earth, and I am keenly aware of the possibility that something doesn’t reconcile between my mom’s journey and my own “fertile Myrtle” experience. Nonetheless, I prayed and prayed for God to keep my baby healthy and bargained with Him about it, too.

Back to the ultrasound appointment. We were so excited to see our baby and find out which room would be the nursery (we have a blue and a green room and would choose which one to set up for baby based on gender…so old-fashioned in that way). I’ve never had an ultrasound before, so it didn’t even cross my mind that anything might be wrong when it went on a long time. Baby was playing a little hard to get, without many good pictures of some key elements. One key element he had no problem showing was that he was a HE. The goods were not in question. The U/S tech printed out a few pictures for us, and told us the OB would be in to the U/S room to speak to us, as she would want to see some things for herself. Great.

When the OB came in she told us about some concerning aspects of the ultrasound. She told us that our precious BOY had a choroid plexus cyst in his brain, and also an abnormally thick nuchal fold. She tried to quell our fears by saying that one or the other of these things might not give her too much pause, but in concert, she felt that I should have another U/S with the high-risk OB group in the area. Their equipment, she said, was first rate and they would be able to see and monitor better than she could. She also asked, since I was still a few days shy of 20 weeks, whether I would like to have the Quad screen now. She made a point of reminding me that I had declined it previously, as though having it at eight weeks would have somehow changed our current circumstance. I wanted to remind her that it was only a screening test which wouldn’t have told us much useful information at eight weeks, and still wouldn’t tell us much of anything. We still were not going to terminate. I decided to go ahead and have it, just in case it could somehow clarify anything when considered in combination with our U/S results. And so, the following week, we were off to the one place I did not want to go for anything related to our son: a high-risk OB office within the walls of the teaching hospital where I worked, and my husband still did.

Sam's growth within, Part 1

Samuel was born to two pharmacist parents. My husband and I are not the most type-A people, but in general, pharmacists are pretty detail-oriented. So when I tell you Sam was planned, you can believe it. Since my husband was in the throes of writing a book chapter about preconception care for women with chronic illnesses, he was well-versed in all that should be done to prepare oneself for having a baby. He harassed me about it regularly. (side note: It’s bad enough feeling stupid about these types of preparations because you read a book or spoke with a girlfriend and found out something you didn’t know. But when you’re getting it from your husband, who doesn’t even have ovaries…you feel extra pathetic not knowing that you should have a dentist appointment before you start trying to conceive, just in case you need any work done that requires anesthesia and can’t wait 10 months or more.) So began my days filled with folic acid, and devoid of Reisling, even though I really wanted it the other way around. Luckily for me, the dentist appointment turned out just fine.

Within a month of our making a plan, I watched the movie “Up” and cried for the first 20 minutes solid. I knew in my heart that our plan had been successful. We confirmed this notion on Easter, a day that is set aside for celebrating new life within. We, of course, were celebrating new life in a spiritual sense, and a physical sense. My husband and I felt so immediately blessed to be entrusted with a life that we were responsible for.

The early days of pregnancy were…just that. I won’t say I had it particularly rough, but for a foodie girl, the bananas and rice cakes diet I ended up on for the first few months was its own special kind of torture. But, having a coworker pregnant at the same time who had hyperemesis gravidarum (extreme nausea and vomiting throughout most of pregnancy), I just ate my rice cakes, lost ten pounds, and counted my blessings. Things were mostly going well, after all. I woke up in the middle of the night pretty early on and couldn’t feel part of my left leg. I could bear weight on it, but couldn’t feel if I touched it. At 3am, I used my iPhone to pull up a dermatome map (a “map” of the human body that shows which areas of skin are affected by which nerves—often used to determine the affected area for shingles), and determined that the baby must be encroaching on one certain nerve. Yes, I am a nerd, even at 3am. I was happy to know these were not problems to be too worried about.

At my first OB appointment, my doctor offered the quad screen. My husband and I had previously decided that as long as the screening couldn’t tell us anything about a situation we could control, that we would decline it. We knew we would not terminate, so in our minds it had no purpose. The OB confirmed what we already knew at the appointment. She had me sign a form acknowledging that I was offered the testing and declined, which I didn’t think too much about at the time. Other than that, I was doing well, with no indication from Sam that there was anything to worry about. Well, other than the fact that the OB’s nurse told me that given my starting weight, they were hoping I would only gain about 15-20 pounds over the course of pregnancy. (Seriously?)

Hello, October!!

So I lied...I'll start talking about the pregnancy journey tomorrow. There is just too much interesting stuff going on around here that I have to share!

Yesterday was my last day working at the hospital, a precursor to my last day of (paid) work for a while! I have finally decided to put my Sam first and stay home with him until he is a little older.

I am scared in many ways of this transition, but I am confident it is for the best. I mean, the hours stink, but look at my handsome boss:

By far the coolest boss I'll ever have...even though one of my current bosses did co-author an article in the medical literature about Star Trek. (I'll miss you, Peter!)

Something cool to share though, and DS related, is that as a going away present, my coworkers made a generous donation in Sam's name, matched by Cardinal Health, to our local Buddy Walk! I couldn't be more grateful for that...as I told them all, they should not be celebrating my being a quitter. :-)

Well, until tomorrow! I'm off to make some French toast, celebrate the cool weather, and get ready for a pumpkin carving party later on tonight.

Followers

I just noticed on the sidebar of my blog, there is a list of people who read my blog...*Hi readers!!!* I do find it a little weird that they are called "followers."

You know who had followers? Jesus.

I am not that cool.

the 31 for 21 challenge

In honor of Down Syndrome Awareness Month, I will be trying to keep up with the 31 for 21 Blog Challenge, which means I will be trying to post every day in the month of October. I've got a few ideas teed up and ready to go!

I think I will run it like this:

Week one--Our pregnancy journey

Week two--The early days

Week three--The here and now

Week four--Looking forward

There might be some surprises along the way just to keep it interesting.

Incidentally, October is also Pharmacist's Month. Hmm...maybe next year!

Bring it F13

I am not superstitious. But I almost was today.

When I woke up this morning, I was worried about what the day would bring. It's Friday the 13th. And honestly, the way the past month and a half had gone, I was prepared to leave the house only if encased in bubble wrap.

Here is how my past 45 days have been (the short version...I might elaborate later if you're in the mood to laugh and or cry):

Husband sick for a week.

Baby sick for a month, including slowed weight gain from quitting on bottles due to nasal congestion and cough.

Car-totaling wreck which was not my fault.

Mom gets sick on Easter...still sick now. Husband gets sick again.

Rental car and 30-hour old car to replace totaled car get significant hail damage.

Hail damage to roof of house and subsequent water damage in house due to holes in roof.

Husband goes on business trip (Sam and Mom home alone together overnight for the first time). Roof leaks again while he is gone...prompting need for water damage cleanup crew for second time. Master bedroom mutilated in cleanup process.

Husband's flight gets delayed and he is gone an extra night.

Mom wakes up with stomach bug morning after Mothers' Day. Husband drives her to work 30 minutes from house, then has to come all the way back out an hour later to pick her up.

Mom comes home, sleeps for 6 straight hours. Wakes up to water damage contractor banging on door. 10 hours from last time she pumped, Mommy gets a clogged duct. Later on, also bleeds into precious liquid gold and throws it out (between the blood and the being violently ill). Mommy quarantines from Sam to make sure he doesn't get sick.

Sam gets stomach bug. Quarantine fail again. We need to learn how to do this more effectively. Sam is now on day three of recovery. Poor thing!

So anyway...I started off thinking today would be awful, but then remembered I'm not superstitious, and decided to tell Friday the 13th to BRING IT. Except for Sam still not being all the way better, and feeling a little icky myself, our household has had a good day. It even rained without any leaking in the house that we could find.

My dear friend, though, did not have a good day. She did not want to discuss it, so I don't know what happened. But I know she is going through something, and my heart breaks for her and her family. Virtual hugs to C, W, and E.

Another Song that touched my heart

Just so everyone knows, I do things besides listen to music. I will admit to listening to a lot of music, eclectic stuff. And I take a lot away from it, which is why this is yet another post about a song.

Sam likes to watch TV. We try our best to discourage it, and keep the TV off quite a bit these days to avoid Sam watching it while under his baby gym or we are holding him. "Sam! You're too little to watch The Daily Show!" is a regular exclamation in our house. But when Sam gets his midnight snack, Mommy needs some background noise so she doesn't fall asleep at the wheel, so to speak. So I put on one of the "radio on tv" channels called "Toddler Tunes." Lullabyes and little kid songs. Fantastic.

Enter Carole King, and shortly after, the tears. "Child of Mine." Oh my.

I'm a bit too young to remember this song's origin. But I felt like I got hit in the face as I listened to it. Humbled by the words.

Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you've designed
Oh yes, sweet darling
So glad you are a child of mine

Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine

You don't need direction, you know which way to go
And I don't want to hold you back, I just want to watch you grow
You're the one who taught me you don't have to look behind
Oh yes, sweet darling
So glad you are a child of mine

Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine

Nobody's gonna kill your dreams
Or tell you how to live your life
There'll always be people to make it hard for a while
But you'll change their heads when they see you smile

The times you were born in may not have been the best
But you can make the times to come better than the rest
I know you will be honest if you can't always be kind
Oh yes, sweet darling
So glad you are a child of mine

It truly makes me wonder if Carole King has a child with Down syndrome.

There'll always be people to make it hard for a while

But you'll change their heads when they see you smile.

This could have been written for my son. My son and every other son and daughter out there with DS.

Sometimes I forget that my perspective is different because I am not only a parent of a child with DS, but a first time Mom also. So I never know what is reaching me as a mom, and what is reaching me as specifically a mom to a child with DS. Maybe those categories aren't really different. Either way, this song had me bawling, clutching my Sam so close he didn't have enough room to breathe. Crying so profoundly that my husband came downstairs to find out what was wrong.

"Nothing," I told him. "Everything's just right."

Genesis

The name of this blog doesn't exactly roll of the tongue. I get that. Hopefully it doesn't keep people from reading about our adventures with Sam. Either way, I felt like it warrants some explanation.

Right about the time I got pregnant with Sam, my husband Alex started learning the guitar. One of the first songs he started working on learning, since the music of Green Day consists of just a few chords, was Good Riddance (Time of Your Life).

Sam was always a kicky baby, earning him the prenatal nickname "Pele," but his activity would typically shoot way up when Alex would play the guitar for us. Doubly so when he would play this little Green Day ditty.

Another turning point, a fork stuck in the road

Time grabs you by the wrist, directs you where to go

So make the best of this test, and don't ask why

It's not a question but a lesson learned in time

It's something unpredictable, but in the end it's right.

I hope you have the time of your life.

It didn't mean much to me at the time, in all honesty. Sam liked this little song by Green Day. It was cute that he liked Daddy's guitar playing, and I thought "Maybe if they are still around we'll take him to see Green Day someday." And that was it. Or so I thought.

Fast forward some months, to a mom scared to death in the NICU. Trying to cope with a diagnosis of Down syndrome in her first born son. "I'm only 29. The quad screen gave us 1:4700 odds. How am I going to tell my family who are so far away? When can we take our sweet boy home already?" One night I was rocking Sam in the hospital recliner, tubes and IV's sticking out of him. Questioning why me? Why us? Why this precious little boy? He was restless. I was more so.

I thought I should sing him a song to soothe him, and probably myself as well. Not having too much familiarity with lullabyes, I jumped to his old favorite Green Day song.

Time grabs you by the wrist, directs you where to go

So make the best of this test and don't ask why

It's not a question but a lesson learned in time

It's something unpredictable but in the end it's right.

I didn't get to the end of the verse before breaking down in tears. How could I have known that Sam's favorite song in utero would reach me in such a way after he was born? How could I have expected that a punk/pop/rock song would speak such amazing wisdom into my life? I was flabbergasted. I still am.

Make the best of this test. Don't ask why.

What a tall order when your week-old child has a diagnosis that you don't really understand. Don't ask why? Are you kidding? I was so intent on knowing why. WHY? WHY? WHY? All I wanted to know was why. Sure they tell you that there is no way to know for sure where the extra chromosome came from. But when you read any websites, even reputable ones, about DS, the answer is always the same. Eggs get screwed up. Sperm don't. My body decided to "drop a bum egg" at the exact time that Alex and I willfully decided we wanted to try for a baby. Re-enter why why why?

Making the best of this test was easier. I had a beautiful baby boy in my arms, after all. When I looked at him, everything else melted away. He was "just a baby." And he would always be my beautiful child. Who couldn't make the best of that?

Not a question. A lesson learned in time.

This couldn't be any more true. As I look back on this now after 5 months, I already know this to be true. Five months has taught me already so many lessons. And the coming months and years will continue to teach me more lessons than I ever thought possible to learn.

Something unpredictable. In the end it's right.

You bet it was unpredictable! We had soft markers on ultrasound, but the quad screen came back with such low odds. I am young. His soft markers resolved themselves. I diligently asked about long-bone length--great every time. (Turns out he's just a tall boy, but his limbs are short in comparison to his torso.) So we had put it out of our minds that Samuel would have DS. But God had other plans. And in the end, it IS right.

It's taken me a long time to get to that place, the one where I know that this is right. Sometimes I stray from this place, and still wonder what the future will hold. I DO believe that God chose us to be the parents of a child with DS for a reason. And I know that Sam was meant to be our son.

I still think about it all the time. I still sing him the song, too. And when I feel overwhelmed by all that is going on in our lives, I think of these lyrics, and find a sense of peace.

So that's the story of this blog's title. I hope it makes more sense now!

I was the only one without one

I felt like the only person on earth without a blog. So I started one. We'll see how long it lasts. :-)