Yvonne Jones

Yvonne is a stay-at-home mother of Nick. He's such an adorable kid! Since Nick was a few months old, they started to see some problems in his development. One night, Yvonne woke up to Nick having a seizure, and they rushed him to the hospital. They've gone through several tests, doctor appointments, and a lot of waiting. He wouldn't crawl, couldn't sit up (he's 22 months old now), and cannot eat solid foods. This week, they found out that Nick has Alexander's Disease. It's a degenerative disease that will take Nick's life. He could live for many years still, but because the disease was onset during infancy, his body won't be able to handle it for a long period.

Yvonne is such a wonderful mother, and I'm encouraged by how much she just lives day to day, enjoying the moments that she has with him rather than thinking about the problems or what the future will hold for him. She's so dedicated to his needs, and you can see how much she loves him fill the room when you are around her.

Nick's mom is so attentive, always by his side! She tends to spend every moment with him, and her only real "me" time is when Nick is finally sound asleep at night (around 11pm or after).

He has several new aids to help in his development. This chair allows him to sit up-- which he can't do on his own, and to strengthen his head. And he can look into the mirror at himself :)

The chair can be rearranged to this set-up, so he can strengthen his arms. This supports under his stomach, and sets his elbows down on the soft, supportive surface, so he can work up some upper arm strength.

When he get's tired of working his neck muscles, he can go into this chair which allows him to relax a bit. He has a lot of fun toys to play with!

His bedroom has both a crib and a bed. If he can't sleep, Yvonne will take him out of the crib and sleep with him in the bed. For about the last 3 months, she's stayed in there with him, because he just doesn't want to go to sleep alone.

He loves the fish! Yvonne also has a lot of pets to care for as well-- there is also a dog and 4 cats, who are all great with Nick.

Since he was born, he hasn't really liked water. So baths are not a fun time for anybody! This is the chair that they use when they give him a bath. It also serves as a safe place to sit as mom gets ready, too!

A typical day, playing and watching cartoons.

And strengthening his muscles.

He's often smiling, laughing, and enjoying life.

Twice a day, he needs to take his medicine via a suppository.

He likes to play with the DVD cases of his favorite movies.

Laughing at mom :)

Mom holds one drum stick, and he holds the other. Then he makes music by hitting her stick with his. It would be too difficult for him to try to control both hands to hit both sticks together on his own.

Dad is just getting home, and Nick is excited!

He loves and appreciates his mom.

She always knows how to make him laugh!

Time to do some sitting up and strengthening of the neck again.

Most of the day is just spent hanging out, having fun together. Yvonne is so sensitive to all of his needs and feelings, and is always ready to do what needs to be done. She is a photographer, but she has put taking any new clients aside, as she needs to devote her life fully to Nick right now.

He loves petting the puppy!

He can't crawl, but he tries to pull himself forward to get to items that he wants to play with. Here's mom and dad's wedding album! He can't hold his neck up for very long, so that's why he has to work at strengthening it every day.

Yvonne takes such good care of Nick. Now that they know that it is Alexander's disease, their life will be filled with many more appointments, physical therapy sessions, and anything else that is needed to give Nick the best care possible. She will be a busy mother! Soon, their family will be receiving 20 hours each week with a nurse, so she will have a chance to go on a date with her husband or do some photography again or spend some time with her friends without responsibilities for a moment.

Nick is her world, and she enjoys every moment she has with him, however many or few that may be. She says that people always say how strong she is, but that deep down, she doesn't always feel that way. It's painful-- but if she sat around every day being emotional about it, she'd miss all of the moments she could be enjoying and she'd miss so many memories that she could be making with him.