Wow.....One Year.....

Today is exactly one year since Wright and I were flown from NHRMC by plane to Cincinnati. Within days we were told that a bone marrow transplant was our only chance to cure Wright's rare immune deficiency, XLP with secondary HLH. Without a transplant he would eventually get an infection his body could not recover from or even worse lymphoma or leukemia.  We also learned that Wright had developed another rare condition, MDS (myeloid dysplastic syndrome) which is Pre Leukemia and abnormal cells were rapidly growing. With the additional diagnosis his transplant was pushed up 3 months. Nothing, absolutely NOTHING could have ever prepared us for this past year. With all of the challenges, fear, uncertainty and grief we have faced this past year.....somewhere along the way we have learned more than we could of ever imagined. We have learned to let go of things not in our control. People ask us all the time how do we do it? Our answer simply is God. Without our faith and trust in God we would be completely lost.  We have also learned so much about one another. I believe this experience has brought the four of us closer together than ever before. We have learned to spend quality time because we do not have the luxury of quantity of time. I have seen Denny at his absolute lowest and I still think he is the strongest, bravest, most amazing man ever. He has seen me totally lose it and almost not be able to put one foot in front of the other and he has helped me through it. We have seen both of our boys suffer and hurt in completely different ways. But we have done everything we possibly could to survive and provide as much stability and normal as we could for our boys. We have learned there are so many awesome people on this earth that go above and beyond to show us we are loved. These people include our friends, family, church and even strangers from home as well as new friends, even more strangers and an awesome team of health care providers and hospital staff. Wright is slowly making progress from his last hospitalization. His mobility really took a hit.  Each day I see improvements. Each day here is progress and a day to rejoice!!  We will do whatever it takes for however long it takes.

As Hill's letter to me above said "Our family is going to be together some day". We completely trust God and His plans for our family. Please continue to pray for our family and thank you God for all our blessings!!

Just to share today in Wright's devotion for September 20 his bible verse was....
The Lord directs our steps, so why try to understand everything along the way?  --Proverbs 20:24

It goes on to say that God has a perfect plan for our life, so to trust Him and try to see things from His point of view. The simple act of trust will keep you from weighing yourself down with little frustrations.

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
--2 Corinthians 4:17-18