Monday, July 21, 2014

Button Change Tomorrow

Tomorrow after a swim lesson, Garrett will be admitted to the PICU in Boise at St. Luke's Children's Hospital to have his feeding button changed. The current button is still functioning great and not due to be changed until December, but it hangs too far out of his abdomen, thus causing Garrett to need to wear something tight around his torso to hold it close to his body so it doesn't feel weird and worse yet, doesn't get yanked out! I believe the surgeon did his best picking the length of the tube, but it hasn't gotten any tighter as maybe he suspected it would as Garrett grows, and his office was more than accommodating and asked me to email a photo. Upon seeing the photo, they immediately called me back and scheduled the procedure for tomorrow.

Should be a very cut and dry deal of admission, a little oral Versed to put Garrett into Woodstock mode, change it while he is in la-la land, let him eat and drink some, then home! Grouchy's mom (my mother-in-law) may come along, so that will be great company. Love her!!!!

So I am not too nervous since there is no real anesthesia going on. I just hope it's quick and that we get the right, shorter size in this time so Garrett can not be so worried and can stop wearing the burn mesh around him. It's too hot for extra layers!!!


Saturday, July 19, 2014

Happy Birthday Garrett!!! Number 9!!! (And please excuse me.)

Garrett with his favorite wagon and his balloons for his birthday party. 

This past Thursday, Garrett turned nine! Wow, has time flown and crawled like frozen gravy all at the same time. Tomorrow, Sunday, we will host a birthday party for Garrett here at the farm/ranchette. We haven't ever had a really large party for Garrett, but this year we planned to include as many people as we could who are friends of Garrett's and part of his life. So it will be a big party by our "kid party" standards! He has friends, grandparents from Alabama and Louisiana, church pals, therapists, community support workers, Sunday School teachers, and many of our dear friends here in Idaho. We are having hotdogs, a "Frozen" movie cake made by a sweet friend, ice cream, and then the menu Garrett created of his favorite foods: Cheez-Its, M & M's, Twizzlers, Ramen Noodles, grapes and of course, Raisin Bran!

And you know what I think we should call this year's party?

This past year has been such a wonderful year for Garrett and for those of you praying for him (if you haven't ever witnessed a miracle or HUNDREDS, you have prayed and now can SEE miracles in our son's life)! It's been a year of fixing medical issues and seeing him GROW and LEARN and be HAPPIER than ever before! I am so very thankful that he has had medical issues we HAVE been able to work on. Most kiddos with his disorder are so much sicker at this age. He had the appendicostomy so he can empty his colon daily and a g-button so we can pour extra calories to get him back onto the growth curve. Both have worked BEAUTIFULLY! He is READING now, doing some MATH, and gaining more and more verbal skills and the ability to share more of his thoughts and feelings more calmly. His processing is improving greatly!

Every year I get emotional on my children's birthdays. I guess it is the feeling that even though sometimes parenting feels like we are stuck in time, time is actually passing by quickly, and I have absolutely NO control of that. But Garrett's birthdays seem to be more emotional for me each passing year. Just today I was in Wal Mart with my mother-in-law and Addie (our 13 year old) and found myself alone searching for Garrett's favorite candies he requested for the party menu. It was an easy mission: candy aisle to get Twizzlers and M&M's. I found the bags of small amounts of M&M's but some were plain and some were peanut. Garrett likes only plain, so I was looking for just a bag of small plain portions. I looked for maybe 20 seconds and then felt anxiety shadow over me like a buzzard coming in for a warm roadside snack. It was heavy, real, and scary. My mind made a strange connection between searching for this particular candy and not seeing it to searching for Garrett and not being able to find him because he was no longer alive. I flashed to those families I pray for who have lost children to Mito or other causes of young death. I snapped myself out of it and settled for a two pound bag of plain M's, but that feeling is very shallow under a very thin shell. It happened again in the wrapping aisle a few minutes later when I was looking at different gift bags that I knew Garrett might love. (He keeps gift bags to play with if he loves them! He packs around toys in them.) I saw the cheap bags I would usually buy and grabbed one with robots and another simple one along with some tissue that had glitter in it. Then one aisle over, I found Marvel and Spiderman and Superman bags, but they were a few dollars each. I suddenly felt the tears coming on again as I wondered what regrets I would have if I didn't spend the additional money to get bags he would REALLY love. What does money mean anyway? How else would I spend it? What's really important? What other regrets would surface later if Garrett went to Heaven before us? I know there are thousands. But the wrapping aisle????!!!! I am a terribly logical person in most cases, so again, thankfully I was able to snap out of it. Maybe it's midlife anxiety, but I am feeling more free of anxiety in recent months after I spent more time in prayer begging God to help me release the stress and anxiety of trying to make those closest to me happy and content in this life. Only those people and God can truly fix that.  So I KNOW anxiety, trust me. And God has answered my prayers beyond measure, and really quickly! But these new feelings are probably just creeping up as I replay the diagnosis of Mitochondrial DNA Depletion and the life expectancy talks both our Mito docs have given me. It is haunting to be raising a child who the "experts" claim is a time bomb ticking each day away. It is also an honor to raise a super hero; this child changes people. He opens hearts and helps people find joy in just a moment. He is truly unique...a beautiful miracle.

I have read a couple of articles and blogs that claim research shows that parents of Autistic children exhibit the same symptoms as soldiers and others with Post Traumatic Stress Disorder. I will say that I have too much respect for our Soldiers to claim I suffer with anything as horrifying as what those brave souls carry after being in battle. But I WILL say that having a child with mental disabilities and a predicted shortened life has changed us...all. It has changed my marriage, priorities, parenting, and most of all, my relationship with my Savior. I have kicked God, screamed, begged, pouted, cursed, and thrown some tantrums that make a raging two year old look like someone in a coma. But meanwhile, He has sustained me, healed Garrett in some beautiful ways, and made me back into clay-like material instead of a cold, hard rock capable of nothing alone. Each year has been hard. Each day has had challenges. But the blessings have far outweighed the costs.

So to those of you who have lost children, my heart continues to hold you as my prayers include you. To the many, many I cannot name who have supported Garrett, our girls, Oscar and me, I can never thank you enough! To our families, thank you for your patience and the hours and hours of help with Garrett and counseling you have done for us. To my beautiful two daughters, I am more amazed by you two every day. You are more faithful in your Christian walk than I have ever been. I adore you! And to Grouchy, I love you.

If you are coming to the party tomorrow and you see a few tears, please know that they are a very special recipe, these tears that are so ready to fall. They are a tender mixture of hope, horror, happiness, gratefulness, sorrow, sweetness, fear, and a very surreal peace. Garrett speaks many times daily of Heaven and its real, concrete, exciting promises. He KNOWS it is real, and this is beautiful to me. I cannot wait for all of us to be there together. "Kingdom perspective" as a friend calls it, is the only perspective to have anymore for me. If the tender outer shell of mine cracks tomorrow to let the tears flow, I will relish that without Garrett as my son, I would never have the faith and love in my life that I have now.

HAPPY BIRTHDAY to the coolest, bravest nine year old I have ever known. I am so excited to celebrate with you and your friends tomorrow!! I love you, Garrett!!!