Hello Lilly

Thank you cousin M. for Lilly's "Hello Kitty" shirt! I wish it came in my size! :)

There are a couple people that seem to often feel that we are taking risks with Lilly's health. Whether it be talking her outside for an activity (pollen risk) or to the lake (bacteria risk) or to a small social gathering (germ risk), to church (big germ risk), out in the snow (cold risk), etc.

My response is always that we would never do anything to purposely endanger Lilly. This post is not to put those people down - I know they love Lilly very much and I am grateful. But I do have a couple thoughts I wanted to share.

(2nd picture - Lilly loves looking at herself in her mirror and caring on conversations with her reflection.)

First, we do take a lot of precautions with Lilly. We know all too well how fragile her immune system is. We do want to protect Lilly and not put her through unnecessary things. We don't take what we see as big risks. We've never taken her into Walmart (a/k/a The Germ Factory) and might not ever! We don't make travel plans without knowing where the closest PICU would be. We all wash our hands frequently and try to stay healthy so we don't get Lilly sick. We constantly petition the Lord to protect Lilly's health, almost always praying specifically about it right before going somewhere.

But we don't see staying locked in our home 24/7 and never letting anyone in as an alternative. We don't want Lilly to be "the girl in the bubble." (By the way - is "the boy in the bubble" still alive?) We want Lilly to have a good quality of life. And we want our whole family to be together, making memories, with Lilly included.

Lilly LOVES going places. She enjoys church each week and usually is awake the whole service looking around. (We have decided it is important for our whole family to attend church together. However everyone there knows not to ask to hold Lilly and people rarely even reach to touch her.) Twice I've taken Lilly into a health food store by her cardiologist and she was mesmerized. (I carried her in there in my wrap with only her little face peeking out.) We get together with friends when we can. (So far people have been very cautious and let us know if they're not feeling well and we'll cancel until they're better.) We took Lilly to the airport once and I did completely cover her up while inside. But outside I uncovered her head and she enjoyed the people walks. My poor father-in-law (that had a stroke in February) has been in hospitals and a rehab facility (and is still not doing well - please say a prayer for him) and we go visit him. (Again I put Lilly inside my wrap and cover her up while in the hallways at these places.) Whenever we get home from being out in public, or outside more than a few minutes, I give her a bath and fresh clothes.

These are just some examples. But I hope it shows that we are careful with Lilly, we do think about what we're doing, and try to take preventive measures.

We have two other children. A 10-year-old and a 2.5-year-old. Even the youngest seems to understand that with Lilly there are just things we will not do. Sometimes it can be disappointing, but they are OK with it. However, imagine if they never got to enjoy doing anything out of the house without both parents and their baby sister along. They would most likely grow to resent Lilly. But by finding things that we feel are OK for us all to do together, we are creating good memories for us all, and those memories will always include our Lilly. That is so important!

I'm sleepy and I'm not sure I'm expressing this very well. But I did think it was important to share. Those of us that have someone a little extra "special" in our family, still need to have our family feel like a "normal" family whenever possible. Perhaps that doesn't make sense to some, but I think other families with special needs children understand.

"How precious is Your loving kindness, O God! Therefore the children of men put their trust under the shadow of Your wings." - Psalm 36:7