Dealing with loss & lessons Ive learned from HLH

Easter 2007 ~ 3 years old

When you think of loss, you think generally of death. For me, dealing with loss took on a new role when Emily was sick.  When she came home from the hospital in 2007, she was a different size. She went into the hospital weighing 26 lbs (and then went down to 19) wearing a 24 months or 2T...when she was released she was weighing close to 40lbs and could hardly squeeze into a 3T elastic waisted skirt.  Her Easter dress that year that hung in her closet with tags on it ~ was a 2T, because she was getting bigger weekly, I found a 4T dress for her that fit a week before Easter...by Easter i could barely do it up.  She continued to grow and by summer (June/July) her cute little bikini's no longer fit, her cute tank tops no longer fit ~ I had to shop.  Most woman would love this, I however, found it torture.  How do you go shopping for your 3 year daughter who was wearing a size 6 in girls for skirts and shorts and a size 9 - 12 for tops.  It was heart breaking.  I felt cheated, like something was stolen from me.  The cute outfits that you see hanging in Gymboree for a 3 year old no longer fit my daughter.  It wasnt her fault by any means. I felt a loss.  I was cheated out of those years in a weird way.  All the nurses and the Child Life specialist were always telling me "dont worry, she will go back down".  Never believed them.  I honestly thought they were saying it "just to be nice".   Just to make me not worry.  About 9 months after she was off the steroids, she was finally down to a "normal" size for her age.  Thats great and I cried the first time I was able to buy her a skirt that was a 4T and fit her because she was in the size she should be.  Every year I deal with the same emotional roller coaster when I change out her clothes from summer to winter and back again.  I wish I could say it gets easier but it doesnt.  The heartache of trying to find age appropriate clothing for a 7 year when she wears clothes in sizes for a teenager is nearly impossible.  Thankfully as the steroids are now down to 2.5mg (started at 60mg), I am seeing her face starting to slim down a little and her stomach is getting smaller.  She still has to wear a size 14 but one day she will be smaller.  I know some of you are probably thinking how selfish i am and is really the size of clothing or her size really that important....its not!  Whats important is that she is here.  But imagine this for a minute.  Your daughter wants to be Cinderella for halloween.  You would simply go down to your local store or buy online a costume in the size she is wearing right now.  Simple, nothing to it.  For us, its not simple.  Imagine for a moment that nearly everything your daughter decides she wants to be for halloween they dont make in her size.  Your daughter can read and says "it says for ages 7-10".  She is right - it does say that but it wont fit her.  Imagine your daughter having to "settle" for some costume just because its one that will actually fit and look age appropriate.  Thats what we deal with, not just for halloween costumes, but for EVERY piece of clothing! It breaks my heart to always have to say "it wont fit"

Summer 2007 ~ Emily's biggest. Emily 3, Austin 10

One thing I have learned from Emily's illness is to stop judging people.  I admit, I used to be one of those people that if i saw someone over weight (I honestly have no room to talk here), I would be thinking thoughts...to myself, never making a comment.  If i saw a child that looked overweight, again, my thoughts always blamed the parents.  I learned firsthand, that a child or an adult for that matter, can be overweight for many reasons.  My child looked morbidly obese and I had ADULTS come up to me & telling me to stop feeding my child so much.  I had adults come up to me and make comments about her facial appearance in the middle of the stores. (Because of the steroid/chemo combo, it made Emily grow dark hair all over the place, including her face).  I learned at that time, you can NOT judge "a book by its cover".  You can not judge someone by their looks.  Because of this, I tend not to notice people anymore by their weight or by what they look like.  I think this has been a huge learning experience for me and something the Lord really needed to teach me.

So next time you catch yourself shopping for your daughter, buying her that adorable little princess outfit or tutu ~ dont take it for granted, enjoy and cherish every moment that goes into it! Also, next time you catch yourself thinking a negative thought on the way someone looks, remember your not perfect either!  None of us are!