But on the other hand, there is times that I feel so very helpless, watching him being poked for lab draws, sleeping next to him in a hospital bed, him lying there ill, going through repeated bone marrow testing, and the list goes on.. Wishing I could take all his problems from him, but knowing I can't, I make the best of this situation.
Tyler has been diagnosed since August 21, 1995. We have learned more than you could ever imagine about this rare disease, and have actually educated some in our community about it. We have a wonderful Medical Team, especially Cheri Mattes, and Doug Eisert, those two have been very supportive, and just all around wonderful. I remember a time that Tyler was in the Pediatric Unit, and Cheri was working, she sent Bob and I to go eat..It was a much needed break!! When we returned, Cheri was rocking our baby, with tears streaming down her face. I already at that time knew how wonderful she was, but the respect and love grew. I value her, and she is a big part of our life. Not only is she the best darn Pediatric Nurse you will ever find, she's a wonderful, very special friend
Speaking of wonderful friends, I have made many wonderful friends who's children also have SDS, Lisa, Darlene, and Karen and many more other parents..I value each friendship, and thank God for each and every one of 'em...
