Shane's Story - Chapter 12

Written 11/10/97

I wrote that story (previous chapters) almost 2 years ago, but it seems like a million years. Reading it, I realize I was still in my "martyr stage"; a stage all of us parents of disabled children go through. Now, I'm back to "normal people stage" and Shane is almost 5. He is walking (actually running around the house and leaving a trail of toys behind him), eating a few ounces by mouth at a time, is completely off the ventilator and oxygen, and had his trach removed a year ago. He wears glasses and hearing aids and is going to a preschool for the deaf. He begs constantly to watch the SAME episode of Sesame Street over and over again; I guess that’s typical pre-school behavior. 

We only have "respite" nursing care at home now- no more strangers practically living with us. His nurse goes to pre-school with him twice a week, to take care of his feeding and medications while he is there. We no longer go to doctor appointments every other week; now we go every other month. He still winds up in the hospital a few times a year for viruses and pneumonia, but luckily they have been short visits. No more physical therapy (Shane has reached all his PT goals); only occupational and speech therapy now, with visits from a sight therapist to keep an eye on his vision. He has a Mic-Key feeding button now, which is actually helping to anchor his stomach into place. He throws tantrums, pouts, and flirts, like most "normal" kids his age, he truly can melt me with just a smile. Looking at him now, it’s hard to believe all we went through. 

Jeremy and I doing well. We are now living the "American Dream", ok, the warped version, but it’s a dream! Haha. We bought another house, have settled down in North Carolina, Jeremy has had a wonderful job for a few years now, and I have Shane and the support group to keep me busy and on my toes. I still battle depession on and off (a result of Post Traumatic Stress, which most of us parents of sick kids get) but life can be good! We have thought about trying for another baby; actually we lost another one (#2) through miscarriage this past summer. Shane still carries around that stuffed Precious Moments’ cherub doll (ok, so it’s "baby" #5, the first 4 fell apart from all the trips to the washing machine, but he doesn’t know that). Rhonda and I have made contact and she is now a member of the group; both of her children are healthy and happy, but Preston will always be a part of all of us.

update 7/5/98

Shane is doing really well- still carrying around "Baby", watching Sesame Street non-stop, eating much better by mouth, has learned 10 sign-language signs, and starts home-school this fall (after going rounds with the local school board who refused to put him in the county's only deaf class and wanted him in the L.D. class instead- where no one knew sign language, even though the deaf class is only 1 year ahead of him and has only 3 students). He plays with cat, loves going outside and riding in the car, and loves to be read to. He makes the silliest faces and has a wonderful sense of humor- you just can't help but smile when he does. I feel like the luckiest woman in the world to be chosen to be this wonderful little boy's mom.

1998 has been hard on us- a house fire (in which Jeremy was seriously injured), e-coli (food poisoning from seafood), a tornado that hit our house, yet another miscarriage, I lost my best friend, my parents are divorcing after 25 years, I had a hard time coping with the birth of my new niece who was born near the due date of the baby I lost last year. With all that's happened, my depression really hit hard for a while as I tried to cope with everything.

Now we're back on track. I have a new job, the support group now covers 47 states and 8 countries and is keeping me busy- so you can say I work 2 full-time jobs. We're trying for another baby again and we finally feel like life is going well and we're almost "normal". I knew we would have it rough after Jeremy broke that mirror 3 months after we were married! LOL 2 months to go and the 7 years of bad luck is over!

(to be continued...)