Sunday, October 31, 2010

The Magic Mirror

Holidays are a fun time of year that both children and adults enjoy. It's a time of celebration: traditions, giving & receiving, loads of laughter, special trips, amazing food and so much more. We all have our favorites - as well as those we could pass on!

When I became a mom, I was excited to have these special times with my own children. I was excited to pass on traditions Rob and I had as kids and creating our own in the years to come. As Dylan has grown, I must admit my outlook on holidays is different than I envisioned in my early years of motherhood. It's not bad, but certainly not what I pictured.

There is no doubt that while holidays are fun, they also take a lot of work. This is certainly true in the world of raising a child who has a special needs and how you approach holidays! For example, we celebrate Halloween, just in a very mild way. We attempt to do friendly costumes and take the kids out to do a bit of trick-or-treating. Dylan, of course, is obsessed with "scary" costumes. He's very visual and if he had his choice, he'd be a bat, witch, ghost or something else along those lines. They're vibrant and intense and grab his attention. This year he opted to be the "Magic Mirror" from Snow White. I would have preferred to have him go as Prince Charming, but this was a happy medium.

Beyond dressing up, Dylan really couldn't care less about Halloween. He doesn't eat candy, so trick-or-treating means nothing to him. It's these aspects of the various holidays that are challenging for us. We look forward to the holidays, but also do a fair amount of cringing. We want the family as a whole to enjoy holidays and the special festivities that come with them, but finding a balance has proven to be difficult. We want to celebrate as family unit, but often Rob or I must stay in with Dylan, as many things are over stimulating and result in a complete meltdown from Dylan. Our church does a yearly Harvest Carnival and we make it a point to never attend. It's an amazing event and all of our closest and dearest friends attend and we would love to go...but if we did, misery would engulf our family.

As each year passes, we grow as a family in how we celebrate holidays. We make modifications, remembering both the good and the bad from previous years. We're always tweaking things. It's just another part of our life. As I think back on this year's current Halloween, I already know that next year we'll set the porch up in a fun, festive manner and have Dylan pass out candy. He loves to see all the costumes and this will allow him to enjoy the holiday in his own, unique way. Make no mistake, I want him out filling a bag with candy and my heart aches to tell him he's had too many pieces, but that's not the hand we've been least, not yet!

Sunday, October 24, 2010

DiGeorge Syndrome, Part 1

I held her tightly as she screamed. I didn't want to be here any more than she did, but we had no choice. I gripped her head, waist and one arm. A nurse held her other arm while another nurse prepped to draw her blood sample. She was just two, but no two year old enjoys this process!

My mind jumped back to her time in the hospital. She was just seven weeks old when she had open heart surgery. She was in the hospital for ten days, hooked up to all sorts of machines with tubes everywhere, including her main IV directly on top of her head! So much blood had been drawn back then. Why didn't they think to do this stupid test back then??

Yet here we were, kicking and screaming two years later. It seemed like an eternity. In reality, the entire process only took about five minutes. As they finished up, I rocked her and sang to her softly. The genetics counselor said we would receive results in two to four weeks. Now the wait would begin.

As I drove away from the doctor's office that day, I was flooded with numerous thoughts. I was angry she had to endure that experience. I was angry that someone didn't think to do this test when she was just an itty-bitty babe. I thought of the multiple conversations I had with the genetics department in recent weeks. I thought of the babe growing in my belly, which led to this series of events.

Every emotion flooded through me: anger, frustration, fear, hope...even joy. I talked to God. I kept finding myself saying, "Really, God, REALLY?! My sweet Savannah might have DiGeorge Syndrome?" After all our family had already been through, I couldn't believe this was another dish we might be served in our buffet of special needs.

I thought more of the babe currently growing inside of me. At my initial prenatal appointment, I agreed to speak with the genetics department. We made it clear we would do no invasive testing, but would have the Level Two ultrasound. I knew I had a 1% chance of another child with Down syndrome, but we needed to know more about the possibility of another heart defect. We would have this child regardless - it was being created in the image of God - but we did need to know if there were any significant organ problems. We went for nearly a week without being aware of Savannah's CHD and she was at risk during that time for "blue spells". We didn't want that risk again.

The dreaded call from genetics finally came. I spent nearly two hours on the phone with the gal, discussing all of our family history. As a Christian and first hand experience, I believe all children have been created just as the Lord intended...even those who are born with special needs. However, many in the medical field have other opinions and I can only hope and pray that in the various discussions I've had with these individuals, I've planted or watered a seed.

As I spoke with the counselor, she asked if Savannah had been tested for DiGeorge syndrome, as it has a tendency to go hand-in-hand with the CHD, TOF. To my recollection, the test hadn't been done. Savannah was tiny, but was developing "normally" in all other areas. The counselor doubted she had the syndrome, but felt it needed to be done, as it is often not visible to the naked eye. She also informed me that we had a 3% chance of another child with a CHD, but this would increase to about 10% if Savannah did have DiGeorge. As much as I hated the fact that the test needed to be done, I had to agree with the counselors recommendation.

So here we were, two weeks later. The blood had been drawn and the wait began. I can honestly say I didn't know what to expect the results to be. In my nearly ten years of motherhood, I felt it could go either way. I knew I had no control. I told God want I wanted...and also informed Him I would be very upset if I didn't get it. Hey, He's God and I can't hide anything from Him! As I spoke with Him I was open and honest, and it was through that I found comfort. I knew He had a plan. He always does. It didn't mean I had to like it, but could pray that He would show me how to continue to lean on Him when my heart was heavy. This was one of those moments.