Saturday, September 29, 2012
1:08 PM | Posted by Jenny | Edit Post
Well all that glue in her hair and a 24 hour EEG gave us a diagnosis....of Lennox-Gastaut Syndrome, which to quote is a rare and "devastating" form of childhood epilepsy with a poor prognosis that leads to regression, mental retardation, multiple types of difficult to treat seizures, behavioral disturbances....and the list goes on. When we got home from the hospital Adriana came up to me and said, "You know what song is stuck in my head? 'Do not worry about tomorrow....tomorrow will worry about itself!" What a timely reminder that all we have is right now and we can choose to believe the best and use our will to rejoice, give thanks, and be at peace with the fact that we don't have to understand everything.
God is bigger than any diagnosis, label, or circumstance after all. And Esther is more than her multiple seizures and constant care. She has already taught us so much....how to slow down, be extremely flexible with "our plans," and how to appreciate little things like big hugs, little grunts of delight, and a greater appreciation for all LIFE. I can't go anywhere these days without seeing kiddos with Down Syndrome, Cerebral Palsy, etc. In a world where intelligence and beauty are the measure of worth, it takes a different lens to see Jesus in a grunting child covered with drool...but Christ said it's in "the least of these" where He often hides Himself. I love His hide and seek games because He always lets me find Him! He has diagnosed us as His "beloved" which is my favorite label of all. Let your Beloved-ness in Christ trump every other name that may have been slapped on you through the years. Your Great Physician is also your Bridegroom King and He is an incurable romantic!
Thursday, September 27, 2012
8:01 AM | Posted by Jenny | Edit Post
This quilt came in the mail right after we got the phone call that Antonio had had 2 back to back seizures up in Minnesota where he was visiting his cousin and we had to come get him right away. He had been seizure free until we left for Uganda this summer, but since we brought Esther home he has had seizures more frequently than ever before. This quilt was made by one of the prayer warriors who had prayed for years for Esther to find a family and each square represents a different family who had prayed for her as well. What a sweet kiss from Jesus to remind me of how He takes what was meant for evil and flips it around for good. Were it not for what Antonio has been through we would never have considered Esther.
So Brad and I had a hot date driving 10 hours in one day, (and God's great provision is that the couple who watched our children while we were in Uganda "just so happened" to be back from Arizona and were able to hold down the fort) which we had just done the week before when we went on vacation to northern Minnesota with my family. Brad was the rock star who packed out the van for all of us. There were no laundry facilities available so when we returned 6 days later there was a mountain of campfire-scented laundry that threatened to take over the house, but we conquered that beast eventually!
These girls lined up at each bathroom stop in order of who took the longest to get their potty business done.
And sleeping in log cabins is just sheer fun.
Antonio is supposed to go down to neurology at the Children's Hospital here, which is quite convenient since Esther has her 24 hour EEG with them today. Antonio is the kid who is always up before anyone else in the house, praying and reading his Bible. He is the first to pray for any situation and has an intense hunger and thirst for righteousness.
I asked Gabriel to strike a "boss" pose, and I like the look that says, "I will not be intimidated." Gabriel looks out for his younger siblings and can have us all laughing hysterically one minute and then throw out a comment that reminds us how deep this young man of God is.
Little man Ari has been through it this last month as well, from a nasty staph infection to a virus that caused such painful sores inside his mouth he wouldn't even swallow his spit. He has been a feverish, limp little thing for a while now, but he's turning the corner.
And then there's little Miss Esther who is making great strides. She can't communicate to me that she needs to go, but I take her to the potty enough that we are having much success in this area. She also has had these laughing spells recently that crack us up. They've been after her physical and occupational therapy sessions, so I don't know if the vestibular system is linked to the limbic system, but all that spinning and rocking and twirling seems to unlock something in her emotional center. We haven't had any major meltdowns lately, but she still wakes up funky after her long afternoon naps so I am curious if the EEG will show seizure activity during her sleep.
Each one of the children adds something so unique to the family. I have lost any definition of "normal" a long time ago and continually ask God for His perspective on each child. He knows the number of hairs on each one of their sweet heads and He alone knows what goes on inside each one.
Dominic was practicing his "pitiful face" because he said it helps him sell more Boy Scout popcorn. Sometimes I ask the kids, "Do you want to be pitiful or do you want to be powerful?" I had a dream the other night that someone had broken into our house and had trashed the place. I thought, "This was a terrorist," because the only purpose was to instill fear. Nothing was actually stolen. Then I read Mark 3:27 in the NLT: "Let me illustrate this further. Who is powerful enough to enter the house of a strong man like Satan and plunder his goods? Only someone even stronger---someone who could tie him up and then plunder his house." Yeah, that's right! Jesus kicked satan's rear on the Cross and it's His Kingdom that is advancing and taking over. We can't be intimidated when we know the strength of our Defender and Protector, the power of our Healer, the intimacy of our Friend, and the joy of our Bridegroom King. We are safe in His hand that is tattooed with our names!