This is my baby girl Ginger. She was born right on time with a healthy birth weight. Her birth did have some excitement and she lived in the NICU for a few weeks before coming home. Since then we have spent the last nine months seeing doctors and specialists trying to figure out what happened and why she is “failing to thrive.” It has been a hard and difficult process and we have had to endure countless inquiries from well meaning individuals. “Was she a preemie baby? Are you feeding her enough? etc” Finally, we have a diagnosis, but we are seeing that this is only the first step to the trying journey ahead.
The doctors believe Ginger has Infantile Osteopetrosis. You can click here for all the details, but basically her bones don’t naturally break down and rebuild. Instead they just keep getting more and more dense. This has a direct effect on her bone marrow’s ability create white and red blood cells. There are a myriad of other side effects including hearing and vision loss, growth reduction, and anemia. Children with this condition can pass away as early as two and most don’t make it past the age of ten without successful intervention.
Next week Ginger will be getting a Bone Marrow Biopsy and we will be checking our boys to see if they are a match for a Bone Marrow Transplant. If viable, this would be our best chance of success. I asked the doctors about what would happen if the boys were not a match, or she was not able to accept a transplant. At this point I found both doctors in the room unable to make eye contact with me as I pressed harder for tough answers to hard questions. They suggested we focus on one step at a time.
As you can imagine this has been a shock to our system. We have had an underlying feeling that things were not good for her, but we did not know it would be this serious. The thing that has given us the strength to endure this is our faith in our Heavenly Father and his Plan of Salvation. We have a hope that things will turn out for the best and our baby, but the knowledge that our family relationship will endure past death gives us peace.
Last year our modern day prophet, Thomas S Monson, gave a sermon called “I Will Not Fail Thee, Nor Forsake Thee.” In the talk he says, “When the pathway of life takes a cruel turn, there is the temptation to ask the question ‘Why me?’ At times there appears to be no light at the end of the tunnel, no sunrise to end the night’s darkness. We feel encompassed by the disappointment of shattered dreams and the despair of vanished hopes. We join in uttering the biblical plea, ‘Is there no balm in Gilead?”
Last Sunday the speaker spoke about the 300 Spartan soldiers and battle of Thermopylae. King Leonidas was speaking to the wives and mothers of the 300 soldiers he selected and he told them why they were chosen. If Sparta fell apart, all of Greece would collapse with her. But who would the Spartans themselves look to in the decisive hour? They would look to the women—to the wives and mothers of the fallen. If these women gave way, if they fell to weeping and despair, then all the women of Sparta would give way too. Sparta herself would buckle and, with her, all of Greece. The King didn’t pick his 300 champions for that quality. He picked them instead, he says, for the courage of their women. He chose these specific warriors for the strength of their wives and mothers to bear up under their loss.
When I want to say, “Why me?” I think of the great trust Heavenly Father has in us to be strong. To hope in the power of the Atonement of Jesus Christ to heal us of these hurts and that we might some day be a strength to others. We have see the hand of God in our lives through this process. A friend of ours insisted on bring us dinner a little over a week ago, before we found all this out. It wasn’t necessary, but kind so we accepted. The day of the dinner my wife returned from the doctor’s office she told me that our Ginger had Osteopetrosis. We were crushed. We spent the day researching and calling doctors and making appointments. At 5:00 the doorbell rang and it was Sister Wells with dinner. She had no idea of our need, but because she loved us and loves God, he inspired her to serve.
As we have told our family and friends we have seen nothing but support. We are so grateful for their love. We of course welcome any prayers on her behalf. I would also hope that you could find ways that you can be the answer to some else’s prayer just as those who are helping us are the answers to ours.
Wednesday, May 21, 2014
I Have a Baby Named Ginger and She is so Brave!
In the new installment of the G.I. Joe movies, we get almost a complete wipe of the cast. Including one persistent character no...