It is hard to put into words how much you love your children. I think I love all of mine equally, yet differently. Certainly I have different relationships with all of them. Ashley was always fairly independent. She was always off with friends or biking around the neighborhood. She was a typical kid. Now she's become quite an extraordinary young lady. She's going to be a pretty amazing adult. I can definitely be the mom to her but I can also be friends with her. We have achieved a good balance. Zachary is a lovely little guy, working hard on becoming a little man. He's a regular boy, but he's sweet, sensitive and lovely to a point.
We have different opportunities with Emily. On the one hand, she's so much more grown up than she should be. On the other hand, she's still so much like she was when she was five. She still cuddles and needs us like she did back then in many ways.
With our other kids, we look at them and see how they are growing up. We see different opportunities in their lives; we see them able to kind of do what they want to do. For Emily, something always seems to go wrong whenever she has something planned. And it kills us to see her so sad, but she always seems to bounce back. I guess the hardest part is that she shouldn't have to miss so much. Looking through her school yearbook tonight I thought of so many events that she wanted to go to that she missed. And it isn't fair.
I am usually a rock. I have learned how to survive and deal with the stress as it gets thrown at us. I try to always do it with a positive attitude. This is our reality. It's times like tonight, driving in the van on the way back home from the hospital, watching her in the rear view mirror and thinking about medicine changes and disease progression that I really start to feel like I've been punched. I wonder what her adult life will be like, and if she will always struggle, if she will always be so sick. Sometimes I think that I have gotten so used to all of the medical stuff that it doesn't really hit me, like I try not to think about everything too much. When I do it makes me so sad. We have to love her harder, be more gentle. And no matter how much crap gets thrown at her she is always so sweet, so cuddly and gentle. And I have to say that right now I have actually grown to appreciate a bit how puffy the steroids have made her. She's extra-cuddly. I'd rather have her off of steroids but I can try to appreciate the little things, right?
While waiting in our hospital room, I spent some time cuddling with
Emily on her bed. One thing that I noticed was her sweet smell. When
she was eight, before she started taking steroids and so many other
strong daily medicines, she still had that sweet baby smell. That was
yet another thing that Prednisone stole from us when it gripped her.
Today I could smell that again.
While she still gives great hugs, before she got really sick she used to give the best hugs ever.
She would wrap herself around you and cling tightly with all of her
might. It's days like this, cuddling in a hospital bed, that I wonder
where the time has gone.
We did have good news tonight. The Cystic Fibrosis test came back negative. I assumed that it would, but it's still stressful waiting. The Orencia that I wrote about yesterday was not approved through insurance today, so we will wait and see. There is a constant up and down in our lives of extreme good and extreme bad- our counterbalance. We certainly have rough days, but I wouldn't trade any of them.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Tuesday, May 22, 2012
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