Annie Jane

I have this friend, Sarah. We grew up about a mile from each other and have been friends since 1st grade. We have a history. We always knew we were a lot alike and people still mistake us for sisters when we're together. I'm always very flattered when that happens. I love her and even though we have been separated by many miles most of our adult lives, we have remained very close.

Sarah was one of the few people that I drew comfort from when our Lauren went to be with Jesus. She wrote me a note about 2 months after Lauren died and in it she said,

"I hurt for you and Matt, because I can't imagine your pain, I want to be there for you, to understand what you are going through, but I can't."

In the same note, she affirmed my feelings, assured me that she was praying for me, offered her support, and let me know that she would never forget Lauren. She is a great friend and her support meant so much to me. She was good on her word and has continued to love and support me through this almost 8 years later.

It breaks my heart to say that on Friday, we will be attending the funeral of Sarah's 6 month old baby girl, Annie Jane. Annie was sick for about a month before doctors discovered she had a large brain tumor. She went from the arms of her mom and dad straight into the arms of Jesus on September 22. I can't understand how something like this happens or why. Matt and I felt like since we went through what we did with Lauren, that everyone close to us was "off the hook" so to speak. Surely this type of tragedy wouldn't strike so close to home again. It did and boy does it hurt.

My prayer is that I can be the kind of friend to Sarah that she was to me. I certainly don't have any answers but I can offer her the same support she offered to me and this time, unfortunately, we will both understand the pain that comes with this type of loss. I hate that it is like that. I hate that Sarah has to know that pain. I hate that we have that in common. I do know that God is at work and I am trusting that he will sustain Sarah, Peter, William and Kate.

I am coveting your prayers now for my dear friend and her family. Pray for a peace that passes all understanding. They are going to need it. Annie Jane and Lauren are together in heaven. I can only imagine that they will be the best of friends.

I will leave you with a scripture that Sarah and I memorized (or were supposed to memorize) during a bible study that we attended together.

Isaiah 61:3 "and provide for those who grieve in Zion - to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor."

Evan

Evan is 6 1/2 years old. He has seen pediatricians, developmental pediatrician, opthamologist, dermatologist, neurologist, neurosurgeon, urologist, geneticist, and endocrinologist. He has had too many viles of blood drawn to count, had 4 MRI's, 1 CAT scan, 2 EEG's, 2 eye muscle surgery's, 1 skin biopsy, been hospitalized 3 times, been taken to the hospital 3 times by ambulance, had numerous x-rays, been in physical therapy, occupational therapy, developmental therapy and speech therapy in different combinations since he was 8 months old, and been poked, proded, and checked over more times than anyone would want. He has been diagnosed with Syringomyelia (fluid in the center of his spinal cord), asthma, and Chromosome 17q21.31 micro deletion syndrome (a small portion of his 17th chromosome is missing).

Evan had some appointments this week down at Riley's Children Hospital. Our first was a 23 hour EEG. Evan is always so tolerant of doctors and does very well but having leads glued all over your head would get to anyone!




He was less than thrilled with the new "hat" he had to wear but decided that it might be ok, after a few books. He is easily distracted:)

The nurse told me that I was lucky that our room had the "deluxe" bed. Yes, that is it folded up behind Evan. FYI...it didn't feel very deluxe to me! He was very ready to have all of this removed but I think that part was worse for him than getting them put on! He was a trooper though and was very happy to see that his hair was still under there:)

After our neurology appointment we decided to have a fun day! We ate at our favorite Indy restaurant, Buca Di Beppo! It was so yummy!

Then we headed to the zoo. I forgot how cool that zoo is and we had so much fun forgetting about doctors for a while. He thought about reaching in and touching the sharks but decided against it.

He did touch the elephant and said that it felt like a porcupine. I'm not sure how he came up with that.

We even got to watch a dolphin show. It was so nice to spend some fun time with Evan in the midst of so much not so fun stuff.

The next morning brought more lab work, an x-ray and an appointment with the Endocrinologist. It was a long 3 days but I came home to two other happy boys, cared for by my parents and sisters and a sparkling clean house (thanks to my awesome mom)! In most ways it was annoying that we had to spend 3 days going to doctor appointments but I spoke to one mom who said they had been there for 13 days! We really are blessed and it was obvious that Evan doesn't have it half as bad as some of the other children we saw at the hospital. We are so blessed with a 6 year old boy who despite all of these medical issues is learning and growing and even teaching us a thing or two. God gave us a special little boy and we are so very proud of him.