Sunday, November 14, 2010

Family Portrait

I doubt there is a mother around who doesn't want a beautiful family picture. Pictures are the only items we have from our past. They are the snapshots of the joy, laughter, love and even struggles each and every family faces. I am no exception - I want a big, beautiful family portrait displayed in my home, so that I can remember more clearly the various stages of our lives together as I age and ultimately forget those moments in time.

Well, I'm blessed to share that we have a wonderful friend who is an amazing photographer. She is a wife and mother herself, so she understands the importance of capturing these wonderful moments. But she also knows how difficult it can be - and our family is no exception! Not only are we a family with young kids - but we've got four (soon to be five!) kids, one of them being that handsome red head of ours who can be especially temperamental. The icing on our family cake is Yoko, Dylan's service dog. That is a lot of variables when trying to get a decent family portrait!

Our dear friend never ceases to amaze me and always gets beautiful individual or small combinations of pictures of our kids or Rob and I with the kids. We've had a few decent family shots, but nothing "over the top". Someone has their head is turned, a strange face is being made or a child is holding an item that is less than desirable to be in the picture. Yes, these are the things that make a picture a picture, yet the desire to have that picture perfect family portrait always seems to hang overhead.

This year was no exception. I was determined to get that family photo!! So off we went to a fun park, where we hoped we might just snag that family portrait. At moments, the kids were all smiles...then seconds later there were tears and, of course, attitude. I took a deep breath and exhaled slowly, telling myself that when our youngest was about ten, our chances HAD to improve. Until then, all bets were off.

We had a blast during our family pictures, even if we did leave exhausted and knew pizza and ice cream were on the menu for that evening. I was confident our dear friend had gotten some great shots - she always did - but the prospect of a GOOD family portrait had seemed to disappear shortly after she began taking pics - just too many variables that didn't seem to be meshing. It was what it was - and I was okay with that. It wasn't ideal, but I shrugged it off. Obviously, Dylan is always the wild card when it comes to pictures. It's all about bribery and manipulation and today had been no exception. We played the Dylan game of "If you do this, you can earn that" for nearly an hour and a half. My brain was exhausted. I couldn't even remember what he'd earned and not earned by the time we were done!

A few days passed and our proofs came in. I was in tears. Our amazing photographer had gotten a BEAUTIFUL family portrait! I was speechless and literally sat at our computer and cried. It was completely unexpected! I was also stunned to see just how big my pregnant belly was - which made the picture that much more complete!

There are moments I want to throw in the towel and not even attempt doing particular things with our family - in a large part due to Dylan. It's challenging, complicated and exhausting. These are the days when I simply don't want to fight the battle, but know that I should. Some things have gotten easier with time, other things have become more difficult. I never know what to expect, but this successful family portrait was a reminder to never give up and too keep on fighting, even when every indication is pointing to a disaster.

Sunday, November 7, 2010

DiGeorge Syndrome, Part 2

The phone was ringing. I jumped to my feet to grab it. Greg and Savannah were both napping and I didn't want a ringing phone to change that! As I picked up the handset, I glanced at the caller ID. I'm certain my heart skipped a beat because I was 99% sure it was the Kaiser genetics department calling. I knew the next call that I would receive from them would be with the results of the genetic testing that had been done on Savannah.

In just seconds, thoughts of all kinds flooded my mind. Would she have DiGeorge syndrome? I shared the possibility with a few individuals and when they asked what my "mommy gut" told me, I said I honestly felt there was a 50-50 chance. Our family seemed to beat all odds...and not always in the preferred this just seemed to fit our bill of kids.

I also felt at peace. Each of my children belong to God and, while I had no desire to deal with yet another diagnosis, I did not fear it, nor was I angry. As that thought came and went, I answered the phone. It was the the genetics department. The geneticist began to speak and then quickly said something along these lines: "Sorry, before I go any further, Savannah does not have DiGeorge syndrome." She continued to speak and I heard bits and pieces, but in my head all I could hear was those words, over and over again: Savannah did not have DiGeorge syndrome.

I do recall the geneticist commenting about the test that was run on Savannah. It was not a test that she requested on a regular basis. In the few years that passed since she last requested that test, it had become more thorough. In fact, Savannah's genetic strand appeared to be "perfect". Yes, she had most certainly been born with the Congenital Heart Defect, Tetralogy of Fallot, but it was simply a defect that began during fetal development. The cause would likely never be known, as least not while I walked the Earth. I knew Savannah was "perfect"...all of my children are - because they're heavenly father created them in His image.

It wasn't a long phone call. I got the results and confirmed that we wanted to have the level two ultrasound of the babe growing in my belly, along with clarification that I had a 1% chance of having another child with Down syndrome and a 3% chance of a child with a heart defect. Jeremy's condition wasn't even in the was simply too rare to really put a percentage on.

I hung up the phone. I felt strange. In all previous discussions with those in the medical field, we had been given some sort of diagnosis. I would get news, hop on the computer and begin doing research, arming myself for what the future held, so that I might be able to help my children grow and develop, despite their quirky health issues. But not this time. I put the phone on the counter and headed back to the couch where I had been attempting a cat nap. Greg and Savannah were still asleep and Dylan wouldn't be home from school for at least another hour. I laid down, completely at peace. I couldn't even bring myself to call Rob yet. I was numb and I had to soak it in. Savannah was OK. Well, she'd be followed by a cardiologist for the duration of her life, but another surgery is not likely and all annual check-ups were indicating that she would lead a "heart healthy life". She could play sports, mother children - anything her heart desired.

As I laid on the couch, I thought of Savannah's heavenly father. I thought of the day I had found out she had the CHD, TOF. I thought of the day we had her dedicated back to her maker. Yes, God had complete control of her life and if I continued to leave her in His hands and relinquish control, she will lead the life He has paved for her.