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.