As you all may have read in earlier articles about my son, Ashton Black, he still is struggling to win his fight with NKH. For those of you who are hearing about him for the first time, he was diagnosed with non-ketotic hyperglycenemia, a metabolic disorder in which he is unable to digest protein. He also was diagnosed with agenesis of the corpus callosum, hydrocephalus (a shunt was placed to drain fluid from the brain), epilepsy, lissencephaly and cerebellar hypoplasia.
After moving from Tiffin to Nashville quite a few months back, we have received great medical care for him and he was doing his best. At 18 months, he finally started tracking objects and communicating very well with my husband, Josh, and I. Although he has come so far in such a short time, he unfortunately got pneumonia. We tried the strongest antibiotics but he was still admitted into the hospital with it again. We tried some more antibiotics but he just is not responding to them.
His current hospice agency told us he will pass away within the next 48 hours. Although they said that a few days ago, he still is holding onto life with a tight grip! He has been such a fighter, even through to the end of life; he has truly opened everyone's eyes. We have had to discontinue feeds because he wasn't tolerating them anymore. He stopped breathing for three minutes straight, has had a fever for more than a week now and has been seizing more than usual.
I want everybody to know, from the viewpoint of a handicapped child's mother, that life is taken for granted way too much. Since Ashton is unable to roll over, sit up, talk, grab toys, have head control or even blink at times, I have come to realize life is way too short. You need to help others every day and be thankful for everything you have. Having a healthy baby is a true miracle, but having a disabled one is a miracle all of its own. People say they see angels in their sleep, but I get to hold one in my arms every day.
After having a child like this, I like to emphasize the importance of parents teaching their children about "the handicapped." It is very hard to take your child out in public and see others point, stare and make comments just because they are uneducated about the disabled. As a mother, it truly does hurt to have people look at your child like he is a monster. It breaks our hearts to have our children not be accepted by family, or others, for that matter. They are Earth's angels, and I hope more children grow up with softer hearts to help them instead of hurt them.
Ashton has been our hearts and our souls. Josh, my daughter Adriana and I are going to be truly devastated when he passes. I know everybody in and around Tiffin has been so supportive of us, reading his Web site, helping us financially and overall giving us support, and we want to thank you all. We are trying to get ready for this transition and we are going to have a huge debt to pay in order to have him transported all of the way back to Ohio and carry out all that has to be done.
Amanda (Raitz) Black is a guest columnist.
When it is time, I would like to invite every one of you whom Ashton has touched, whether you are a complete stranger or close relative. I know Ashton would love to see how many people have made a difference in his life, and the ones for whom he has made a difference. A lot of you know his grandparents, Randy Raitz and Kelly Omlor, Carol and Charles Black; his great grandparents, Gerald and Charlene Raitz, Lois Dearsman, Charles Black, Janis and Tim Fish, Bill and Deborah Elchert; and his great-great grandparents Virginia and Ray Mathews, and Clyde and Sarah Fish.
The funeral home we have chosen is Harrold-Floriana in Fostoria, and the cemetery will be Greenlawn in Tiffin. More information will be given when the time comes. Thank you all so very much for helping us in our time of need. My grandmother, Deborah J. Elchert, has set up an account for us for donations for his funeral at: Old Fort Bank, 33 W. Market St. Tiffin, OH 44883, under the name "Deborah J. Elchert - Memorial Fund for Ashton Black."