Oh my goodness, this has really crept up on me!!! In less than 7 days, our little guy will be six years old. Wow! It has been said by every parent, I am sure, but I will say it again. It seems like he was born just yesterday, but then it seems like he has been with us FOREVER!! Grouchy's mom and Cousin Sarah are flying out here from Louisiana to help us celebrate Garrett's big day. About 45 minutes from our little ranch is an indoor trampoline park that Garrett and the girls (and most adults I have talked to!) love, so we will plan to go there on the day after his actually birthday to celebrate. My parents will be here, too, and Mom has already been shopping for presents for Garrett. She got him a really cool sprinkler, and he will love that!!
I don't think that it is sinking in yet. Six years old. He is small for six and certainly about 50% behind globally, but six. I think I will have to sleep on this before I can even begin to type emotions.
There is one emotion I am having, and likely it is somewhat due to seeing so many children lose their earthly fight (or win it, depending on how you look at it) with Mitochondrial Disease in the past year. I feel we need to go all out, make his day HUGE, because, well, because each year is a big deal. He has had a very good year as far as his health is concerned. Mentally he is making some strides. But time is passing. Disease is changing his body. His mitochondrial DNA is depleting. Those are the facts. My job is to manage his health and wellness and make the best of his days, regardless of his time on earth. His upcoming birthday makes me feel a little more pressure to make his day super-special. At the end of the day, will he even realize what has happened....maybe, but I feel I need to make all his little moments happy ones. He made it another year. We are blessed beyond measure.
The trip to the trampoline park will make him so happy. I thought about sneaking dozens of helium-filled balloons into his bedroom befor he wakes. He loves balloons and really loves to let them go into the sky. Maybe he could have 24 or so in his room and let them go one at a time. He also likes swimming at the YMCA, so maybe we can end the day at the Y swimming. Since the 17th is on a Sunday, we will just make his birthday on Monday to keep it simple. I need to contact a couple of his school buddies to invite them to join us. Wow, I need to get to work!!
SO there are my ponderings as of late!
If you have ordered a bracelet, I enclosed my address, or use the return address on the envelope to send the payment. No worries. I trust you guys, and I know you are going to make it happen! Just hope you enjoy the bracelets and maybe even steal the idea to help you raise money for Mito research and awareness.
And for my friend who asked about Lucy in the last photo. Long story, but she had to go. Addie liked her, but she broke her arm late 2009 coming off of Lucy, and we noticed the mare was pretty reactive and spooky, and decided we were not going to have anymore mares. We could not trust her personality. I sold her for near nothing only to learn now that she is apparently an amazing roping horse. We didn't need a roping horse, but interesting to know. I bought the grey from the same guy I about gave Lucy to......we won't talk dollar amounts as I will cry.......That said, I bought the pretty grey horse as a possible fit for me and for Addie, and he has been a big disappointment, so he is getting returned, and we are now looking again. He is very herd sour and reactive as well. I am starting to think we need an old, maybe even stiff, old gelding who isn't worried about the rest of the world. So there's the answer about Lucy. She was a beautiful girl, but a girl. Sorry, I am not usually sexist, but this time I must say I am a gelding-only kind of person!!!
Godspeed,
Clara-Leigh
Hey Clara-Leigh! OK, its been awhile since Ive raelly sat down and spent hours keeping up with all our special moms out there! WOW, 6 yrs old, can hardly believe it, but Jack is 8 now and I cant believe that either! He still looks about 6 to me anyways.
ReplyDeleteWas waiting for more of an update with the Chicago Symposium (from anyone!)...I so wish I could of cornered a Mito specialist about sleep stuff, and mostly about Hypoventilation and using oxygen for our kiddos. I really want to give it a try for Jack due to his sleepiness and daily fatigue thats been going on for waaayyy too long. The Bipap isnt working out, a month now and he hyperventilates everytime I just try to put it on his face. So I just sent an email off to his Pulmo, pretty much begging him to let us try it. Of course we'll have to keep an eye on his CO2 retention and pray that using the O2 wont raise the numbers any further. Dr. Russ S (Jacks Seattle Mito Dr, Im sure you saw him in Chicago) Isnt pro oxygen like other Mito Specialist are. Dr. K is and often recommends it for her patients when they dip below 95. Jack can dip into the 80's at night but we have yet caught it during a sleep study (naturally!) I want to try something though since another school year is around the corner and I cant see him missing so many days again. Its either that or nothing and its the nothing that worries me. His CO2 labs/breathing is worsening.
Anyway...Sorry to see you lost your sweet old dog :( thats never easy. I know nothing about horses but I suppose theyre no different than adopting a dog from a shelter--you never know what youre going to get!
WELL BIG HUGS to all your kiddos, will be looking for an update on Addies stuff soon--Enjoy whats left of your summer!
Heidi & Jack.