Lillian is doing very well currently. She is on her month of gentamycin nebs right now and I have continued to keep her on albuterol once a day since her last asthma event. I give it prior to her pulmicort which helps to open the airways to allow the steroid to go as deep as possible.
We recently had a Chic-fil-a open in a nearby town and it is so much closer than any other CFA around...like all the others were at least an hour away and this new one is about 25-30 minutes. Well, I had errands to run and I thought I would take the little kids inside and eat. I don't often do this on my own because it's just a lot to handle. It's like having twins. seriously. two toddlers. As we walked in Ezekiel just kept right on walking before I could get a hold on him and Lillian just went right on behind him. (mind you it was pouring rain outside and I'm carrying a diaper bag and feeding bag and my purse) I got them gathered up and we waited in line all the while me explaining that we just don't walk away from Mommy. Anyway, we discovered prior to ordering a friend from church was there as well and we immediately chose to eat together. As I attempted to wrangle a high chair (which an employee kindly fetched for me) I began to remember why I don't take the kids places alone. That friend I mentioned, well she was just a God send...and I mean for real a GOD send. Various issues took place requiring me to leave the table a few times and thanks to her I was able to do so without dragging both kids along. I kept thinking to myself, as I was feeling frazzled, what would I do if she wasn't there and how much more difficult it would have been.
We did have a good visit and chatted and enjoyed each other's company, but parts of our conversation reminded me of the "abnormalcy" of my family life. I think, in a different world, we would have sat there, our kids would have gone off to the indoor playground and it would have been different. We would have planned an outing at another location she mentioned and we would have done that and enjoyed another time of fellowship together. But, that outing is likely never to happen.
As I drove home, my mind began to ponder on how badly I want Lillian to be able to enjoy the things that her siblings did and what every other child does. We know, though, through these last years and have learned that those moments are fun, but in the end always detrimental to her health. Honestly, on the drive to the restaurant I was thinking, I should let Lillian play on the playground...it wouldn't hurt....my heart wants that, but my brain knows better.
I guess what I'm getting at is I accept our life the way it is, yet there is still pain. There is a yearning for her to have "normal" experiences. Maybe I can't even explain it unless you experience it yourself. Then I have to fight the urge to not feel so lonely or awkward. It's craziness I tell you. Just crazy. So I pray and accept that that pain may always exist somewhere deep inside and i choose to be grateful that she is still here and thankful for friends that God puts in my path.