Life Along SDS Highway 101 with Frequent Vacations in Egypt

We've been on a journey along what I like to call "SDS Highway 101" for almost twelve years now. I have two boys who have Shwachman-Diamond Syndrome (SDS) and I can tell you that nothing can ever prepare a parent to hear that their child has a life-threatening, potentially fatal illness. Finding support along the way has been a valuable tool in helping our family cope with the twists and turns of life along SDS Highway 101.

The SDS Highway 101 has many exits along the way. Sometimes we are able to choose where we get off and other times we are forced off the highway. While we often experience traffic jams and construction, we also experience driving smoothly along the scenic portion of the highway from time to time, too. Of course, there are bumps in the road, dangerous curves, and narrow sections along the way, too. We've even experienced breakdowns. The families we have met through the SDS support group have helped us tremendously. They have been our tow-trucks and snow plows during some pretty scary times (breakdowns and snow storms!). It helps knowing we are not on this journey alone.

Sean and Joseph were both diagnosed at the age of two. Their journey to diagnosis was a long one, one where we did not have experienced families to talk to. Not long after Sean was diagnosed in 1998, a friend and I started an SDS email list on what was then called One List (now Yahoo Groups). This daily contact with other SDS families became a life saver for me. These families helped us through many a road block and trial. Over the years, I have been blessed to meet these parents at various conferences, camps and in Cincinnati where my boys are seen at the Bone Marrow Failure Clinic at CCHMC. It has been wonderful being able to meet and connect with these families - especially when we are at the hospital in Cincinnati. It has helped my two boys cope with their hospital visits and the long trip to Cincinnati. One time, Joseph forgot he was going to CCHMC to have a bone marrow biopsy done! He thought we were going up there just to visit his SDS friends. It warmed my heart that his SDS friends could make him forget why he was going to Cincinnati. I like knowing that my boys have met friends that they will be able to lean on and share experiences with as they grow up dealing with SDS. We all need friends who can understand. Their SDS friends can understand their trials better than I can because they have SDS and know what it is like to live having the disease.

One of the coping mechanisms I have adopted over the years, is to take virtual vacations to Egypt. It started off because I would tell people I was in denial about the boys having SDS and would tell them that I was, "Cleopatra, Queen of Denial." I would talk about floating down Denial River and how I was so far up Denial River that I could see up Marc Antony's skirt. One day, another SDS mom mentioned vacationing in Egypt and sitting on top of the Great Pyramid and so it began.....our entire support group began taking regular virtual vacations to Egypt. I am the one who always brings the umbrellas for our virtual adult beverages as we float along the river. I like the brightly colored paper umbrellas, they are important to me.

As you can see, life along SDS Highway 101 can even have its entertaining moments. I have leaned on these friends a lot in the past year and a half. In October of 2006, Joseph had neurosurgery (they cut the base of his spinal cord) and in December 2006, we learned that there was a possibility that Joseph may need a bone marrow transplant. We later found out that he did not have a match in the National Marrow Donor Program Registry and were devastated. Both of my boys are about to have their fourth bone marrow biopsy in just over a year because they have had abnormal findings of del 20q and del 7q. These curves in the road have been scary, but I am not alone. I have faith that God is always with me, but I also have the wonderful friends I have met along SDS Highway 101. I do not know what I would have done without the support of these wonderful friends.

Life is a highway. It has been a blessing to have people with me who have already been to some of the exits I am approaching. As we face the possibility of transplant, the families who have experienced transplant have reached out and shared their experiences with me. I cannot thank them enough for their love, encouragement and support. I hope that I have been able to help other families through the sharing of my experiences, too.

You are not weak because you reach out for support from others. We all have the need to be understood. If you are battling a chronic illness, find others who are on the same highway. Sharing your experiences can make you a stronger person and better able to deal with your child's illness (or your own). If you have a family member with Shwachman-Diamond Syndrome, I encourage you to find support. Those of us with SDS children travel down the same SDS Highway 101 and through the Shwachman Syndrome Friends and Family list, we have helped one another cope with the twists and turns of SDS Highway 101.