Taking care of Andy

Taking care of Andy

I am not sure if people know everything that it takes to care for a disabled child. This is a 24 hour job that requires alot of love and patience. Don and Sheryl had to adjust to a life full of fear, a total lack of privacy and had to learn skills they never would of thought possible. The care that they give to Andy is remarkable, they know everything about his medical care and every noise and beep from him or his machines he uses. Sometimes it seems that they are so tired but they always have the strength,patience and love to carry on. Stays in the hospital and ambulance rides have become a part of theirs and Grandma O'Neil's lives, but somehow they manage to keep it together and always have a reassuring smile and love for Andy that really shows in his care.

For anyone who has a child with a disability you know the hardships that come with it, but for people who do not just imagine having someone in your house all the time, a nurse or family member, imagine trying to do family things together and trying to divide your time between Andy and 3 girls who need you too. Trying to do it all. Knowing that you can't do things without having a qualified person to stay with Andy. With 24 hour care you learn to depend on nurses or trained family members and you have to learn to trust them. At night you sleep with one ear open listening for any beep of the machines. If you don't have a night nurse you have to learn how to stay up with no sleep and then function the next day or Grandma stays and goes to work the next day. You try not to ask for help even though your family has offered because you feel like you have already asked so much, even though you know your family is behind you 100% and will help however possible sometimes it's hard to ask. Imagine having to clear your childs lungs so he can breathe, or when his oxygen level in his blood drops and you have to help him breathe. Imagine not seeing him walk or talk. Imagine trying to keep all his appointments and the other childrens appointment straight in your mind. Imagine trying to learn how to take care of him and the machines and the fear that goes with that. To have to learn what can make him sick or what signs to watch for and constantly watching for early signs of a cold so it doesn't turn into pneumonia. Now imagine feeling helpless because you can't fix it and the frustration of knowing that so many people have never even heard of this disease and knowing that funds are needed and trying to help raise them to help find a cure. The anger that you feel inside , not for yourself, but for your child because he has to go through so much, but despite what he goes through he always has a smile, has a sense of humor and is very loveable! Try to imagine the frustration and heartache you feel because your love for your child is so big that it hurts your heart to see him this way. Now try to imagine people not wanting or caring enough to try to help find a cure, imagine the frustration when you write letters and try to get radio or tv stations to mention this disease and no-one responds. Now imagine yourself clicking off this website without a second thought of sending even the smallest donation.

Sheryl and Don have a family that helps alot but no matter where they are Andy is always on their mind. The worry that something could happen at anytime is a very real fear but they have learned to tuck this in the back of their mind and to take one day at a time.

Andy is doing very well, he is growing so fast and his personality shows through with his facial expressions and his GREAT BIG smiles! He manages to let you know what is on his mind either with a furrowed brow a raise of his lip or a very hilarious eyeroll! (which usually means get out of the way, I can't see the TV!) Andy is a very popular little boy and if you met him it would be really easy to see why!

Grandma O'Neil has a very strong bond with Andy, she is always there when Don or Sheryl need something and luckily she has a wonderful employer who stands behind her when a tough situation arises and Andy needs her. Grandma plays with him and they have special songs and games they play and I think their times together are special for both of them, just like with his Mom and Dad.