Exactly 4 years ago today...

(Jonas flying a kite, August 2010)

...our lives were forever altered. At the time, I thought they had been permanently altered for the worse and I was sure I'd never be able to truly feel happiness again - at least not in the way I had once known.

I had gone for my exciting 20 week ultrasound and part way through, the technician started acting very strange. I assumed she was annoyed that we wanted to know the gender so I brushed it off. We found out we were having a boy and were excited to start sharing the news. A couple of hours later, my OB called and asked me if Devin was home. I told her no and she hesitated to tell me why she had called without him being there. I convinced her to tell me anyway and she agreed but first asked me to sit down.

That was the moment the world I knew started to crumble around me, while sitting there on the edge of my bed. Clara was thankfully napping and didn't see me completely fall apart when I called Devin at work to share the news that there was a good chance our baby had spina bifida. He came home at once and we just held each other crying.

That day was the worst in my life so far. I would pace from the sofa where I would sit and think to the computer where I would sit and read and back again. I felt desperation and grief like never before. The next day we had our appointment with a specialist who confirmed everything and did his best to gently educate us and comfort us. As I look back, I realize just how amazing he was. He said some things to me that I will never forget. More than anything, he was a compassionate doctor and I've since learned what a unique quality that can be. After that appointment Devin suggested we go to Baby Gap and buy our son some new clothes. I remember asking him out loud if our baby would be able to even wear normal clothes. He laughed (nicely, of course) at me and asked me what I was expecting - of course our baby would wear normal clothes. I honestly have no idea what I was expecting and had no reasonable argument, so off we went with the puffiest eyes I've ever had to pick out some cute baby boy clothes. He knew just what I needed.

The next few weeks turned into a whirlwind as we went to many appointments and had to make the biggest decision of our lives. To be apart of the MOMs trial or not? The MOMS study is comparing in-utero surgery and post-natal sugery. It carried plenty of risks and would uproot our family but also offered the chance that it could help our baby. We had to make our decision quickly because if we participated, we had to complete an amnio, gather test results and go through two days of testing in San Francisco all before I was 24 weeks along. With so much to do, I threw myself into preparing for the trip and trying to be as normal as I could for my innocent Clara who at 2 1/2 had no idea what was going on. When we flew to CA on Halloween 2006 (with Clara bounding through the Baltimore airport in her Cinderella dress) we did not know if we would be randomized to the pre-natal surgery or not. If so, we would end up being in CA until the baby was born and released from the hospital - up to 4 or 5 months. If not, we would be on a plane 3 days later heading home to wait out the rest of the pregnancy. All I could do was pray and leave it up to Heavenly Father. I knew He knew what was best and that He would do for us exactly what Jonas needed...since I certainly didn't know.

After two days of meeting with amazing doctors and having multiple tests done, we were randomly assigned the post-natal surgery group. I was a bit disappointed but I had to fall back on my belief that God was in charge here and I had done all I could.

As we headed home and settled into the winter I slowly felt the shock wear off. Time and prayer helped me begin to deal with the grieving process. Great friends nearby and supportive family far away also helped more than they will ever know. By the time January came, I felt scared but also excited to meet my Jonas. Even that was a miracle since a few months before I couldn't imagine being excited to start this journey.

Now here we are, exactly 4 years later, and I am humbled and overwhelmed with how much has changed. Having a child with special needs has helped me appreciate things I previously took for granted. It has not been a pain or stress free 4 years and it continues to be hard at times, but it has been the most rewarding and meaningful 4 years.

Seeing Jonas do something he has been working on for months - or even years - brings the greatest happiness. Seeing Clara know just what to do to help her brother without anyone saying a thing makes me so proud of her and I know she came with a unique set of qualities that our family needs. Seeing Jonas laugh his absolutely wonderful laugh and rely on his great sense of humor to make others laugh makes me realize just how perfect he really is. Seeing how much these challenges have brought Devin & I together makes me see that Spina Bifida does not need to bring the sense of despair I once felt. I am sure it was a normal reaction, but I wish I could go back and tell myself just how bright the future is and how much joy was in store for me. I also wish I could share this knowledge with the many moms who have recently received this same diagnosis or who will.

I just finished reading "The Year My Son and I Were Born" by Kathryn Lynard Soper about her son who has Down Syndrome. In it she says "...when it comes to happiness, the only doors closed to us would be the ones we refused to open". Again, I wished I had believed this 4 years ago. In truth, I knew it was how I should be feeling but that acceptance did not come immediately, rather it came gradually.

The reason I am writing this now is because first, October is Spina Bifida Awareness month and second, this has been a unique fall. The past three Autumns have brought with it an element of thoughtfulness. Because October 2006 was so poignant to me, each subsequent October brought with it some painful memories. For whatever reason, this one has been different. Maybe it is the new baby I am carrying, I don't know. What I do know is that my life is blessed beyond measure and I know these blessings come from my Heavenly Father. I am grateful to have Jonas in my life just the way he is and I am grateful for his reminder of what is truly important...and his eskimo kisses just about top that list!

(Eskimo kisses at Rievaulx Abbey, September 2010)