Consider Pure Joy

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. James 1: 2-3

Christmas 2012

on December 31, 2012

This Christmas season has been one of the most original our family has ever had. For the first time in as long as either Elizabeth or I could remember, we did not have anything to do on Christmas day. Our family celebrations were done the Saturday before Christmas, and Christmas Eve. So Christmas Day was to be a relaxing celebration at home. In fact, Reese turned 17 months old Christmas Day! That morning she received her presents from Santa and the rest of the day was planned as a slow and relaxing one in front of the fire watching Christmas movies.

As we’ve learned from the last 10 months, our journey with Reese will always be unique and Christmas Day did not disappoint. Around 4pm that day Reese started crying like she was in pain. As we’ve discussed in this blog before, Reese does not cry. She can fuss at times when she’s hungry or tired, but otherwise she sheds no tears or cries out in any loud way. This time she did and she cried with such painful tears that hadn’t been seen since she had her heart surgery. We tried soothing her by walking or rocking but she kept crying and flexing her legs. We thought it could be a stomach problem since she had a stomach virus just a few days earlier and ended up at Kosair’s ER. We also thought she maybe had a Urinary Tract Infection (UTI). She’s had 2 before but they usually involve a fever which she didn’t have this time and she’s never cried like this. We decided to put her in the car and drive her around to see if she would settle. Reese absolutely LOVES riding in the car while starring out the window and just smiling and laughing. This time she kept crying and we knew this was different.

So where do you go on Christmas Day when your child is sick? Why to Kosair Children’s Hospital of course! This would make our 3rd visit in 6 weeks to the Kosair ER, which is surprisingly around average us. The last 2 times we went we knew what was wrong and what she needed to get well. This time we were worried more than normal. Seeing her cry like she did was awful and we’re so not used to it. She cried the entire trip to the hospital which is about 20 minutes. Then cried another hour or so after we first got there. So all told, 2 solid hours of hearing our princess uncontrollably cry was not fun for us or easy on our nerves.

Since we visit this ER quite frequently, the nurses know us and Reese by sight and even know Reese by name. The ER was very busy and in fact one nurse told us that Christmas Day is one of their busiest days of the year. They were taking kids back for triage then sending them back out to the waiting room to wait for a bed to open up so they could see the doctor. Thankfully, either because they knew us or most likely they just couldn’t stand seeing her cry, we got in a room immediately. After a couple of x-rays, and a catheter, they determined she had a severe UTI. They gave her 2 shots and sent us home on antibiotics. When the nurses came in to give her the shots, they said they would give them both at the same time in each of her her thighs. When they pulled back her leggings, they both commented on how she had perfect shot thighs! Basically that’s a cute way of saying she has chubby legs. It gave Elizabeth and I a good laugh. We now pinch her chubby legs and call them shots thighs.

We didn’t get home from the hospital till around 10pm. We were so hungry when we left the hospital, we tried to think of some place that would be open on Christmas and finally realized Chinese! So we got home and chowed down on Chinese food while Elizabeth’s mom came over and helped put Reese to bed. As I said earlier in this post, this Christmas was original and Reese made sure to make it an adventure. Reese is doing much better now and is a very happy little girl.

This was the first Christmas holiday since we learned of Reese’s diagnosis of MECP2 syndrome. Last year we were enjoying our little girl’s first Christmas, not knowing that this Christmas we would be looking back at the last year with such sadness, joy, and awe. We’re sad because our expectations for our daughter our very much different than just a year ago. Last year we dreamed of her crawling or running to the tree this Christmas. Now we just pray she one day may crawl or walk. We’re joyful because our daughter is with us and we’re so blessed with all God has given us this past year. We are in awe of God’s glory. He is the one true¬†sovereign¬†God who gave us the most precious gift in his son, our savior, Jesus. We all fall short of God’s glory every single day, but his grace through his son is what we can always depend on. It’s the greatest gift ever given. May we give him the glory in everything we do.

I leave this long blog post with some pictures of our family this Christmas season. Hope everyone reading this had a Merry Christmas and a blessed New Year. God is good.

2012-12-15 19.22.17

2012-12-15 13.16.22

2012-12-24 23.32.32

2012-12-23 13.00.41

2012-12-25 10.24.53

2012-12-25 09.24.25

2012-12-24 20.07.35

2012-12-23 10.24.13

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2 responses to “Christmas 2012

  1. Charlotte says:

    Hello we have a son with xq28 triplication and they are querying MECP2. He will be 18 in may. We live in England and would be interested to be in contact with yourselves.

  2. Judy Sparrow says:

    What a beautiful Christmas we had what a beautiful baby we shared it with alcove you forever.

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