Just a quick catch-up...we had a GREAT Thanksgiving at my parents. J & I actually took off early to give him a whole week's worth of r & r w/Grandaddy. School is tougher this year and it's starting to take it's toll. J gets more physically tired than a lot of his classmates b/c he has to work harder at the more basic things like walking, etc...and much to the amazement of some of my friends, we aren't "perfect attendance" monitors in our home. It's impossible w/extra doctor visits, etc... anyway. So a couple of times a year, I let him stay home for a day to rest (we have had 2 Christmases of pneumonia over the years...we now try to prevent that!). He laid around Grandma's, watching movies, reading and waiting for time with his cousins. We had a wonderful lunch w/Grandaddy's smoked turkey and then of course...Black Friday shopping w/Grandma & my 2 sis-in-laws :) (Well, J & T headed to Uncle T's house for the day, they aren't the shopping types!) We started the shopping thing a few years ago and I think we are actually crazier than the average Black Friday shoppers b/c we don't usually have any specific items to purchase, we just like the sales!!
Anyway...back to my original post idea...while visiting mom & dad's over Thanksgiving, I was able to spend just a little time with some of my closest friends from high school. On Tuesday, my sis-in-law and I went to dinner & to see Twilight w/2 of my wonderful friends, we had a great time! Then on Friday...after a brief nap...I drove over to visit 2 more. Walking into their mom's house was so calming for me b/c it was just like the 1980's all over again (not the decorations or anything, just the feelings I had...like we were back in high school..I spent a lot of my high school years in that house!). I didn't get to stay long, but the short time I was there made me wish I could have been there all night. Besides going to visit Lor and Hi, I was also there on a special mission...to hold Baby Dalton, or "Big D" as they call him. Big D is Hi's youngest boy, he is 8 months old and he has a disease called Krabbe's. This is a rare, inherited degenerative disorder of the central and peripheral nervous systems. Krabbe disease is one of a group of genetic disorders called the leukodystrophies. They discovered D had this when he was 6 months old. The prognosis is not good, he is expected by doctors to live only about one year. He is on several medications for pain and to help him relax. He is fed with a syringe and physically is the size of a 4 month old, these are all symptoms & troubles of Krabbe's.
All that medical stuff aside, I thought he looked wonderful! I just wanted to hold him all night. What a sweet boy and he makes such sweet sounds. I can't imagine what Hi and her family are going through on a daily or even hourly basis, but I know that God is truly working in them and through them. Such positive spirits, more beautiful hearts you have never seen. Hi also has a 3 year old so she is one busy mom.
Ok...I know...where does this "Peanut" thing come in...ok..ok...back in 1998, when my sweet boy J was born, the first gift he was given was a small mini-beanie baby named "Peanut". The nurse who helped me that first night left it in his warmer for him. A cute little light blue elephant. After several weeks of being in the NICU (Neo-natal intensive care unit), the above-mentioned friend Hi, sent J one of her Beanie Babies out her own collection to keep him company. She told me she wasn't sure which one to send but chose one anyway....and I'm sure you've already guessed this...it was the regular size "Peanut", the elephant doll (mind you...she and her sister had NO idea we had the mini version already!). It was like a love note from God for me b/c J had such bad days and good days, as anyone w/NICU experience can tell you, it's a constant roller coaster. You go from knowing your little one will survive, to being positive he won't. I was amazed at how God had lead Hi to choose this doll for J, knowing it was just what my heart needed as well. Peanut stayed w/J all 3 months in the hospital and a good 2 years after. He was a bit worse for wear, occasionally had a bit of blood on him from IV's, but was soon packed away with 2 other special buddies that were with J from his first day in NICU (a Caterpillar beanie-baby and a bunny).
As you can imagine...while J grew, I purchased 3 more "Peanuts", it was a thing for me. He has the big light blue one and he has 2 darker blue (mini and large) which are not actually named "Peanut" but are in the same family (if Beanie's have families, ha!).
A month ago, when Lor told me about Big D, I just wanted to drive up to Hi's home and hug her for a long time. However, since it was a school day and I couldn't make it there & back in time, it didn't take me long to know exactly what I could send Hi. I talked it over w/J and he thought it was a great idea, so we dug Peanut (the one Hi had given us) out of storage, gave him a good cleaning and sent him w/Lor to give to Big D. He's back home where he belongs, giving peace and comfort to another sick little baby boy and his heartsick mother. I pray that God has used this as a love note for Hi like He did for me. Hi told me that Peanut is w/Big D all the time now at home...and apparently her older son has one too! I love that :)
And another funny note...that old caterpillar doll that was always snuggled into J's "Snugglie" while he was in NICU...the poor thing only has 1/2 of one antennae now...his mini-version was snuggling w/Big D that night I held him. Lor's daughter is adamant about that mini-caterpillar being w/her cousin, Big D. God is so good, giving us connections and love notes all the time if we just have a chance to slow down and see them. T, Lor and I could have gone to eat w/about 40 people from our graduating class that night, and I'm sure they had a great time, but I think I had the better deal b/c I got to spend quality time w/Big D, Lor, Hi and their mom. I got to stop and hold a little one even for a short time..and watch his mom and aunt make tutu's, while his grandma & I laughed at them :) Just like old times, ha!
They are starting a foundation called Dalton's Dream. For now, the money donated to Hi and her family will help cover their mounting medical bills. In the future, Hi hopes to work on legislation to get newborn testing done for Krabbe's and other leukodystrophies. If you would like to donate, please let me know and I'll put you in touch w/Hi or Lor. They are selling blue bracelets w/"Dalton's Dream" on them for $5 to raise money also. Great stocking-stuffers for your kids b/c you can tell them about Big D and how they are helping to serve his family by wearing the bracelet!
J has rediscovered all of his Peanuts now...Blue J is the new name for the darker blue elephants, the larger of which is now the preferred travelling and bed companion :) Or "soft action figures" as his father likes to call them...dad and their sons...ha!
I'll get back on in a day or two w/some of our pics from Thanksgiving and a recipe for the BEST hot chocolate ever!!
(just fyi...Beanie Babies are EXCELLENT for preemies b/c they help hold cords down and out of the way and they are great for snuggling them up tighter in their warmers...they are actually practical!)
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