Friday, May 13, 2011

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.

Tuesday, May 10, 2011

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."


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!