Today I ask that we pray for my baby, Jarrett. Jarrett has a severe and challenging diagnosis... the unknown. Jarrett was born 6/20/07. He had seizures inutero for months before his birth. Ten hours after he was born, he experienced a life threatening seizure, and continued to have seizures for months after he was born. Thanks to modern medicine the seizures are now controlled. He however does not have a diagnosis. It seems that the blood tests, urine tests, genetic screens, spinal fluids, MRI's, EEG's,EKG's and a whole slew of other testing should be able to come up with a"cause" for the "effect." However in our case, it does not. All of the pain that our little boy goes through on a daily basis is gutrenching, but he only shows us that with a smile. He is the happiest, most loving littleboy that any family can ask for. He has touched our lives in a way that no other person can even come close to. Today I ask for prayers for Jarrett, not for his diagnosis. A diagnosis is a word usually with a negative perspective, and that doesn't accurately describe Jarrett. Pray that his happiness and fun loving personality will continue, and pray that he will continue to help strengthen our family and our faith.
I love to keep up on the Riley families that I met. I think they are all extraordinary stories. I really think parents could learn a lot by just being involved with a sick child. One of the babies that I met at Riley passed away Sun. He was in my same module, and I talked with his mother occasionally. This little boy, Evan, is in the best place possible, Heaven. He was a true fighter, but after so long he lost the fight. Pray for his mother and family. They have had a tremendous loss. Darla Kiesel
Jarrett and his family were at Riley at the same time we were, and I remember vividly the day I met them. We were veterans by that point and my heart went out to them. It is never easy needing to be there, but as time passes it does get easier as you fall into a new routine - or maybe you fall into a blessed numbness of acceptance in the new day-to-day. The numbness is frequently shocked back to reality either through your own setbacks and changes in routine - or by experiencing it through another family you have become close to. I mentioned that in a previous blog that we all seem to go through a period of "aloneness" during the coping process, well at least it was true for me and for other families I have talked to. Sometimes you cling to others and sometimes you cling to yourself - if you are really fortunate you realize that even during those times you have to draw into yourself, you are still not alone but carried in His embrace. It is important to remember we are never truly alone and that our friends and family are there for us to reach out to, but I also think it is ok to accept those times when you just can't. As you pray for these Riley Families, take a moment to thank God for Riley, but more importantly for the nurses, doctors, social workers, maintenance/cleaning staff, RTs, PTs, OTs, SLPs, Audiologists and more people than I can list who make the care of these babies possible. The building is a structure, but it is the people who make the difference to those who need to be there.
