Wednesday, December 29, 2010
Who ever said friends have to be
people, with words so useless, careless and free?
Who ever said a friend has to say
thank you in a truly verbal way?
Who ever said friends even have to be
the very same kind of friend as you and me?
And who ever knew that on this earth
my very best friend would have four hooves and fur?
My Buddy, my pal, my genuine friend
whose energy and trust could never end.
A sweet malnourished two year old horse
and then we fed which led him to, of course.....
Become a two year old unridable beauty
with me being bucked off....silly blonde cutie!!
With months of love and patience and time,
we became inseparable, and one just fine.
In dreams as a toddler I imagined this guy
and he took me for rides through the vast nighttime sky.
On the wings of this steed I would soar and smile
and wake to imagine he was really mine for a while.
And he was, my parents indulged me and gave in to my dream,
and I couldn't have been happier, that moment, to be me.
And the years rolled past with my mom on his back,
and she loved him and rode him, and gave the reins just SOME slack.
She gave him the best a horse could have
and he loved her in return, kept her safe, and was glad.
His life was long and happy and then came the best
when my mom spoke to him gently as he came to rest.
There will always be that place in my heart and in the earth
where our sweet Buddy lies, and oh the countless worth.
In memory of Buddy
sometime in 1983 - December 29, 2010
I hope each of you, sometime in your earthly life, has the opportunity to bond with one of God's most amazing creations.....the horse....
Godspeed, and thank you, Mom and Dad!!!!
Monday, December 27, 2010
So at the end of a day that started off with a heavy dose of helplessness, I have turned my energy to action. Watch out world, Mama Bear is back at it!!
Thanks to each of you who read my previous couple of posts, and those who commented. I appreciate you being here!!
And Erin, your kiddo will be fine!!! Just watch the second and third. Never know!!! And we are still reading Ferdinand....might should have named Garrett Ferninand!! Love you!!
I stayed up after everyone Christmas Eve, of course, making things "just so." I relished the chance to prepare the morning's surprises just right for my three angels. I prayed for each of them as I organized their goodies and placed them by my inlaws' huge fireplace. I went to bed almost too excited to sleep!!!! The children were going to be sooooooo surprised and excited this Christmas!!
And morning came. The girls got up and came to get me, and they WERE excited, but neither had spotted their digital cameras nor the Wii. So I got to see the pure excitement on their beautiful faces as they finally realized what was there for them. JOY!!!!!
Garrett tore into his things and smiled at each one. I had spent so much time thinking of the right things he would enjoy at his level. His teachers shared ideas with me. I watched online for ideas, and I thought about what made his wheels turn. And I got those things. A soft rocket that shoots into the air when a pedal is stepped on, Stinky the talking, farting and burping garbage truck, fire truck jammies, and then family gave him CDs, a lighted disco ball he LOVED, and more great items, but it was just too much. The day was hard. As the cousins arrived later in the day, it got a little better, but most of the day was screaming and screaming and screaming.
That night we escaped upstairs in Grouchy's family's house and laughed watching all the other grandchildren play the dance games on the Wii. It was a truly fun time!!!
We put Garrett to bed and I felt I had crossed the finish line of a marathon setting a world record. RELIEF, ACCOMPLISHMENT, FINALLY........peace!!!
Yesterday was a painful day of processing for both Grouchy and me. Honestly, we feel helpless, tired and sometimes hopeless. I do not remember much about Christmas morning besides the shrill screaming and madness our son experienced. Dashed were my desires, not for it to be a perfect day, but for my child to be happy.....very happy. He cannot deal with himself.
Our girls felt it. Ainslee turned into a sweet mother hen for Garrett yesterday, and Addie became withdrawn and sad looking. I understand. They feed off of us, and Garrett feeds off of........well, who knows?
We have plans this week to spend time with some old friends from here. We have resorted to asking people to come to see us and for us to stay put. We almost canceled a visit from a dear cousin and his kids yesterday because we just didn't have anything positive to share with anyone. Garrett is getting worse in the cars now, so traveling and having him hit his sisters, scream, tantrum while someone is driving is not safe or enjoyable for anyone.
But there's this weird, somewhat new emotion I am having, and I think Grouch feels it too per our talks between screams yesterday. We have never resented friends or strangers with "normal" kids. But now when we are somewhere with friends or family and we leave AND when people come visit and then leave, I feel this very odd, new emotion. I feel sad because when we leave or they leave us, they can return to life without us......normal.....their usual routine.....peace (or as much as people with kids can have)....basically, life without our child's screaming, tantrums, quirks, worries. It hurts. It really, really hurts. Maybe I feel this because I wish I could escape, drive away, leave "us" and walk away saying,"Man, I am glad that's not my life!" And I can ensure you that's exactly what I would have said if I were on the outside before I had Garrett and even now!!
No, I am not walking away from this. I can't. Plus even is I wasn't married to the most amazing man in the world, I could not in my somewhat right mind leave another human to deal with this alone!!! However, after the crying, bumbling mess I was all yesterday, I think he might rather go this alone!!!!
This Christmas was one of reality, love, and I hope some form of deepening our faith. Today feels a little better. I slept between Addie and Ainslee last night. We do that when Grouchy is away for work, but last night they begged me to snuggle, and I did....all night. Usually they retreat to their spots on the bed, but last night they wrapped their little warm bodies all around me and stayed that way all night. And that hurt, too. I know they are not getting the me they deserve. SO I used their sleep to love on them.....to just be there and pray. Pray for normal? No. Prayed for whatever God can give us to help us do whatever he wants us to do with all of this.
My prayers and thoughts go out to my mito friends who have little ones inpatient or sick today.
May God send a better year for everyone!!
And may we work really hard to acknowledge our blessings, even the teeny-tiny ones!!!
Friday, December 24, 2010
I mean, so many times we all wish Garrett into the next stage or phase, as we do for all kiddos, but when it doesn't happen in the desired order or in the "normal" timeframe, well, it can be discouraging. But not tonight. My little guy is just about as perfect as he can be. God created him, and wouldn't it be fun to always believe?
Merry Christmas, and may Baby Jesus be your BIG SHA-BANG in the morning and all of your days on earth!!!
Tuesday, December 21, 2010
She said he does have esophagitis, so we should restart Prevacid, but give it in the mornings only, but give the total daily dose then, 20 minutes before he eats breakfast.
She said only a few eosinophils were seen, and that is good because it is less than were seen three years ago. So no Eosinophilic Esophagitis, so that is very good.
BUT he does show cells that are pointing to Celiac Disease, and she wants to get more blood testing done for that, including a genetic study. She feels it is likely he has it, but she wants to try to confirm it better before putting Garrett in the gluten free diet as it will be quite a change and a big challenge to get started. The nurse practioner is on it herself, so she is so understanding and considerate about it all, and that makes it all seem better already. THANK YOU GOD FOR THIS GREAT CLINICIAN!!!!!!!!!!!
So more blood will be drawn when we get back to Idaho in early January. Then in late January we have the visit with our mito doc and the gastric emptying scan as part of a research project while we are in Houston for the mito doc. My mom and possibly Grouchy's mom will be coming to meet us in Houston. We are looking forward to that couple of days for sure!!!
Christmas greetings and blessings to each of you this week. May your holidays be filled with good times, family, friends, and above all, THANKFULNESS for the sweet Baby Jesus!!!!!
Monday, December 20, 2010
All is going as planned. He loves the Exlax chocolates, so that's easy. When I bought 5 boxes of Exlax chocolates, the young guy working at the checkout said, "So, you playing a joke on somebody?" I might be the first person he had seen buying that much and it NOT a joke!! So I explained.
Garrett is complaining of his stomach hurting some, but he is giving us what we wanted from it.....I will spare the details, but let's just say he smells and we are laundering lots of clothes!!! Today is day 4, and we were instructed to continue 4-7 days until his stool is brown water. If any other slow motility moms have any input or advice, I am all ears!! So let me have it!!!
Garrett is a very slim boy, but now his colon isn't super-huge and completely 6-8 days full of stuff, he looks even more slim. I think his distended belly gave the illusion he had meat on his bones, or at least some fat on his stomach.....not now! Might be in the market for suspenders soon. The tab waist pants aren't quite working as well!!
Friday, December 17, 2010
I wonder how you would feel
if while you helped your son,
someone got into your face
and pointed out your little one.
This brave and special little boy
whose Thomas backpack was put up high
until the plane reached cruising altitude,
so he cried, "Why, mommy, why?"
Did you think about anyone but you
when you rudely singled us out
and made a spectacle of yourself
with not a comment, but a shout?
"YOU HAVE TO GET YOUR CHILD TO BE QUIET!!!"
You yelled at us both in disgust
while other passengers passed us by
with very little fuss.
We are on this plane by miracle alone
and by God's own grace, you see.
At one point we were told by doctors
my son might not live to be three.
He has a scary disease,
and he cannot help himself.
His mind and body sometimes lurch out of control
with nothing we can do to help.
But here we are defying the odds
flying cross country today,
very happy to make this long, long trip
to see family far away.
Rest assured when this plane lands tonight
our family's smiles will be all I see,
and your grumpy,
ugly face will be but a speck of dust to me!
There, I feel all better now!!
Tuesday, December 14, 2010
Saturday: Friend's son, 3, (friends from Louisiana sayign in the guest house) throws up all night AND his mom, my sweet friend, Vicki also gets sick.
This morning on the way to airport: Vicki's 5 year old starts throwing up and does so all day while flying...yuck!!
This afternoon while I am with Garrett getting his G.I. scope: Ainslee starts barfing at the babysitter's home.
Tomorrow: I am suppose to fly to Louisiana from Idaho with our three kiddos for a three week visit over the holidays.
Tonight: If Addie and I are going to get it, it needs to be now because.........
If we are sick trying to leave Idaho, we will not be going to Louisiana at all.....and that would be a bummer!!
Please pray for no tummy troubles!!!
And Garrett's scope showed some weirdness, but nothing huge. Biopsy results back next Thursday, so that will give us more info. Also blood tests will be back then.
Sunday, December 12, 2010
Saturday, December 11, 2010
SCROLL TO BOTTOM TO SKIP CHIT CHAT AND JUST VIEW VIDEO OF TUBING........
Video is Vicki, Addie, Ainslee, Leah, Laura and Jacob all going down the tubing hill connected by holding each others' tube handles.
Yesterday we took our Louisiana friends to the tubing hill at Bogus Basin Ski Area near Boise, Idaho. Previously we have been skiing, but the tubing hill just opened. It's a 2 hour tubing slot for just ten bucks...SCORE!!!! There are no lanes, just an open slope! The staff was so incredible to help us with Garrett the Screamer, hook and unhook our tubes to get us pulled back up the hill, and even recommend fun positions on the tube as well as teaching us to spin and to lock arms and legs with other people on their tubes and spin us all together!!!! Needless to say, we had such a fun time!! Even the little ones liked it, and they are 3 and 5 years old!! Garrett screamed that he did not want to do it, but then once we were heading down the mountain, he was smiling saying, "This not scawey, this FUN!!!!" His FAVORITE part was getting pulled back to the top. All we had to do was hook our rope on a metal pole at the bottom of the hill by the pulley system, have a seat on our tube....a little jerk, then a smooth, slow pull to the top of the hill. I had to convince Garrett the only way to ride back up is to slide down!!! We took one break for a few minutes to go into a little room to warm up, then headed back out for a couple more slides. He did get very, very mad a few times with tons of screams, no, he actually screamed most of the time, but then he liked it once we were moving. I think it must have been overwhelming from a sensory perspective, and I think, like Grouchy says, that sometimes his nervous or anxious energy comes out as screams or tantrums. I had a couple of other tubers try to console Garrett so kindly, and one lady give us that "Holy-shit, kid, what's your problem" look, but I just said, "This is what autism during naptime looks like!" and everyone smiled and understood. Overall, a fun time, and on the way down, my little man says,"Mommy, when we come back ride the roundy things? I had fun."
But to show up at my inlaws' home and START and COMPLETE the cleanout at my inlaws' house....OH MY GOSH!!! They will NEVER want me to come back. Now to some of you, that might be a good thing, not to be asked to visit the inlaws, but for me, it would be bad.....very, very bad. I happen to love them dearly, but I am cracking up thinking about this:
Hi, thanks for having us!! We are excited to barge into your beautiful home for THREE WEEKS. Now if you will excuse me, I am going to slip into the kitchen, pour a stiff glass of egg nog and give Garrett 4 times the adult dose of Exlax twice daily for the next few days....Won't this be TONS of fun!!!!!! If you haven't done a cleanout of your child's digestive tract, it involves giving them huge doses of laxatives, and in our case, stool softener as well, then pushing these meds until the child is having bowel movements that are brown water, then backing off because then the system is clean, and you start a new maintenance regimen with the same meds.
We had to do this once with Ainslee. I remember following her around with wet towels and Lysol for a couple of days.
To those sweet, sweet Mito moms who have sent your best wishes, THANK YOU!!!!
This process should yield results for our Garrett, and hopefully get his colon back to normal size.
His upper G.I. scope is Tuesday with biopsies. We should get a little info when he is out of the procedure, but even more a week later when labs are in.
Hugs to you and yours. I guess at least we will be cleaned out to start a new, "fresh" new year!!!
Thursday, December 9, 2010
Garrett has been on a stool softener, Miralax, since he began solid foods, which was around 2o months. It produced the desired one stool per day for a very long time, but over the past few months he has slowed way, way, way down to one day of soiling diapers every SEVEN days. Dr. K, our Mitochondrial Disease specialist, recommended for us to go ahead and see a G.I. doctor here rather than wait until we see her in late January with this extreme slow down in Garrett's world. There is one pediatric G.I. clinic in Boise (an hour from our home) with three doctors and one nurse practitioner, and so far 3 moms have HIGHLY recommended the nurse practitioner. I can see why! She was very friendly and had a wonderful manner with Garrett. My boy has seen way too many doctors in his time, so bedside manner is extremely helpful in being able to even touch him. After we talked at length about Garrett's history of reflux, no reflux, who-knows-if-he-still-has reflux, constipation, increased complaints of pain in his tummy, more constipation, and then a rectal exam, she thinks he may have eosinophilic espohagitis, reflux and possibly Celiac Disease. All of this blew me away as he has been tested for EE and Celiac and both were negative. According to the nurse practitioner, looking at Garrett's past labs, he looks very suspicions for EE because the diagnostic criteria for that has changed, and were he to get the same results he had in his last upper G.I. scope, he would be diagnosed with EE. Wow. Then there is the Celiac Disease, and it is frequently hand in hand with EE. And then both of those things contribute to the reflux. Then we talked about the rectal exam. His rectal muscles are in tact fine, but she says he has "mega colon," meaning his colon is so huge he is holding up to 8 days of stool and never empties adequately. SO MUCH TO THINK ABOUT!!
So we have a clean out planned adding tons of laxative to the Miralax schedule to get him all flushed out. Did I mention we are flying to Louisiana Wednesday.....gosh when should I start this??? It will be such a mess!! Also, Tuesday Garrett will have another upper G.I. scope with biopsies to help us get a better idea of the total picture.
We talked about toilet training, and she says not to even try yet. Between this horrible little system of his and his delays, it just isn't fair to think it possible yet. She also thinks that with his delays, we cannot expect toilet training anytime soon.
I left feeling hopeful. We have taken action now, and that is wonderful. Oh, and the guilt....As we were wrapping up our visit, she said that this will all help his behavior because he will feel better. She pointed out that his is distended.....belly looks like an Ethiopian kid on the starving children telethons. His belly is bloated, and she explained that this is from the gas build-up from all the food fermenting in his system..YUCK!!! Also, and this makes me sooooo sad, she said he always hurts and feels bad with these issues. She said that he feels like you or I feel when we have a terrible tummy ache and have to go run to try to sit on the toilet without soiling our clothes....that horrible gassy rumble. You know the one!! Well he ALWAYS feels like that. Shoot, no wonder he is a grump and sometimes just goes nuts!!!
SO that was the visit. Besides that, we went to the children's museum in Boise, or rather my friend Vicky, my kids and her kids went while Garrett and I were with the nurse practitioner. Then after his appointment, we went to Rocky Mountain Pizza for dinner and then to this spectacular display of lights and the botanical gardens. The kiddos loved all of the lights through 3-D looking glasses that turned each light into a star, snowman or another type star. They had a blast!!
Tomorrow is tubing at Bogus Basin ski resort, and then dinner out followed by night at the YMCA climbing rock walls and swimming. Party on!!!
Sunday, December 5, 2010
Some friends are here for two weeks, and they are coming with us to ski tomorrow. We are all so excited~~but then there is this cloud of sadness lingering over me about not being able to take everyone. Don't get me wrong, we will have a great time, and we will focus on the girls, and we will have more, much, much more freedom to stay longer, have more fun, ski all day....but we are not ALL there. Last week there were three year old children skiing, no joke. Grouchy calls them Weeble-Wobbles!!!! They are so stinkin' cute out there with their tiny skis, little helmets, all bundled up and all....but not my little guy. My little guy will be with a sitter. He LOVES his two sitters...LOVES THEM!! They get here when we are leaving him with either of them and he says, "Mommy, Daddy, go now. _______ is here to play with me! Bye!" And I am so aware how blessed I am to have him be that way. We could have to peel him off my leg while he screams as he sees us leaving him out, but he doesn't. SO I am thankful, but still, will things ever be normal around here? Can we go do things as a family without either the separation of our family for sanity's sake or the walking on glass feeling of taking him places and wondering how it will go and if we will all arrive home safely AND sanely AND give the girls our attention!!!
On the flip side, last night we took a Polar Express-type train trip with the kiddos. My friend Vicki and I took our combined six kiddos, and it was a blast. Garrett tested us some both directions of the total 3 hour drive, and he had his moments on the train and once were were at the North Pole, but overall it was positive. So there, that was pretty normal for a family with three kids, one being a 2 or 3 year old. But Garrett is now about 5.5 years old. And did I mention what it was like to change an over-flowing poopy-diaper with him standing on the lid of a very tiny toilet in a smaller-than-airline-bathroom on the ancient train??? It was interesting. So that was a good trip overall. But there were still moments that I thought were terrible. And I would seriously question ever taking a train ride with him EXCEPT this one most awesome moment where he was in the outdoor observation car and looked out into the snowy night with his bright red, very cold cheeks and said, "Mommy, I had a fun day today." I was mush!! THANK YOU JESUS!!!!
So I am thankful for the time Grouchy and I had to ourselves in Houston this week. I am very, very thankful for my friend Vicki who flew here from Louisiana for a visit but came early to keep our kiddos so we could go on our Houston trip. The children and I had fun on the train last night. We had a good day at church today and at home with the fourwheeler-sled gig we are getting into more these days in the 6 inches of snow still here. And tomorrow will be just great, too, I know!!! But then I have to leave my little dude behind. I don't want to. But I cannot imagine taking him. He would be miserable. Just the drive there...... Yes, I would like a small order of NORMAL!!!!
Those are my ponderings.
Friday, December 3, 2010
Thursday, December 2, 2010
Today while Grouchy was in meetings all day, my friend Kim and her three kiddos picked me up and took me to lunch at my VERY FAVORITE RESTAURANT, Pappasitos, in Houston. We also did some shopping, and of COURSE enjoyed catching up since they left Louisiana shortly before we did for a work-related move. I miss you guys too much, and I hope you can get to LA over the Christmas holidays!!
Prayers and hugs to you and yours tonight!! Extra prayers to my brother-in-law Lee and his family tonight as his dad fights for his life. We love you all!!