For the past little while I've been writing a gratitude journal about Carter to help give me perspective. I will share a few of these things with you:
- I love his smile and laugh, he is a very joyful boy
- I love his sweet personality, he just exudes this
- He is patient with his trials and life
- I love his hugs and how affectionate he is
- I love his baby blue eyes
- When he bites blankets or soft animals it makes me laugh
- he is so happy on horses or just going for rides in the car or wagon, simple pleasures
- he lights up when someone interacts with him closely
I have felt more tender and loving towards Carter lately, perhaps in part because I have tried putting myself in his shoes. I don't know how much he understands about what goes on around him so that must be scary. He has to trust us completely to do everything for him, like a baby does. He has to deal with sickness and hospital stays, and he does so patiently. When he is in pain or uncomfortable he can't tell us. I just imagine this big and wonderful spirit inside him, with a grown up perspective, in this little imperfect body. He amazes me daily by just being him. Taking religion into perspective, I don't know anything for sure other than that he is already perfect. He cannot make mistakes or be judged for them because he is a perfect soul. I think, I don't know, that he chose to come on earth knowing he would have these trials. That amazes me because it shows me just how wonderful he is. It reminds me of a book I read and this quote, which I may have shared before.
"There was no pettiness, or criticism, or sarcasm or wickedness in Carter. He has no selfishness or ill-intent. He seems almost to be living the life Jesus taught...yet all who should have recognized godliness overlooked him. His physical limitations...were not a punishment for him, but were designed by his own heart so that he might be an example for the rest of us....Only a large soul, far advanced, can give so much just so that others might see more clearly. Such is a means of allowing the rest of us to place our own grievances in their proper perspective, and of showing us how much even the weakest among us is capable of giving. We can see, or not see. The choice is ours." - Threads, A Reincarnation of Anne Boleyn
When I read this passage in the book, which had nothing to do really with disabled kids, it screamed Carter to me. He is my example, and his sacrifice will be rewarded greatly one day. I hope to be a loving mother to him, patient and kind. So that one day when I can see what his soul looks like, what he really looks like with no disabilities, not only will I be in awe....but I hope he will be proud of me. For I am already proud of him.
"We must be willing to let go of the life we have planned, so as to have the life that is just waiting for us."
Preschool started back up on Monday and Carter hasn't been able to go. He has a cold and as usual, it goes to his lungs and he coughs a lot. I just don't get how his body gets sick so fast. Sierra had a little sniffle and sneezed a few times, and it jumped to him and just attacks. It seems every year about Halloween time, he is sick until spring. I REALLY hope this hasn't started early. I need so badly for him to go to school. I need those breaks and the time to nap when Sierra does. This thyroid thing is kicking my butt, I am always so tired and never feel like I get enough sleep. On the weekend Chris lets me sleep in once and he has to wake me up around 10 because I could just keep sleeping. Cross your fingers that Carter gets better fast and that I get more energy.
We decided to get a van to make things easier with Carter getting bigger and heavier. We are trying to sell a car still, but we did buy a van just over the weekend. It's a 2002 Toyota Sienna with lower miles and good condition. We got a good price and are now working on getting it new tires and registered and all that stuff. It's silver and can fit 4-5 kids. It also has a TV and VHS with DVD hook ups. Great for kids and long drives.
The front row is just 2 bucket seats and the back is a row that could fit 3 without car seats. I like to drive it it's fun to have something 'new'. Now cross your fingers we can sell the other car!
Carter saw Neurology and GI yesterday, his last yearly appointments for the year (I hope). Neurology is going to slowly taper him off one of his meds because he has been seizure free for a year and a half. Phenobarbital can cause agitation in toddlers she said and if on for 10 years or more, can lower IQ points. He has been really agitated lately, so I hope this helps. GI fit us in because his button keeps popping out real easy. Sometimes he pulls it out or moves too fast that I don't get to him in time. Other times it seems to pop out for no reason. The doctor said some kids will flex their stomach muscles to pop it out. If this keeps happening, he said he could put a barb one in instead. It would have no button and would be hard to get in or out. They would sedate him a little to get it in so he wouldn't feel the pain. We'll see how things go. When it pops out, his food gets everywhere and is hard to get out of stuff.
I noticed a book that I really want to read by Keva Horry, the former wife of seven-time NBA champion Robert Horry. She writes about her marriage and also her daughter Ashlyn that had 1p36 and has since passed away. It came out in February and I just found out about it. I would love to read more about other peoples' experiences. I've recently been discouraged with having a special needs child, and I had a stranger approach me downtown last weekend. She told me about the son she lost in 1995 from seizures and how she felt like I needed some encouragement. It was very touching and so nice. It's not often people know what to say or do, so it really lifted me up.
It feels like this summer is just dragging on, now I know why parents so look forward to when school starts. Carter has been more difficult lately, crying for who knows what reason. I call them his daily temper tantrums but they drive me crazy. Nothing seems to help, he just finally snaps out of it. He seems more needy lately and guess who always is? Yep, Sierra. I love my children very much but lately I feel caged in. Even with the variety of summer activities I still feel unfulfilled and stressed out. I'm not feeling very patient lately and I find myself wishing I had a really long vacation to look forward to. But I don't. It can be very hard to be a stay-at-home Mom, it truly is the hardest job I've ever had. I should know, I've had 23 jobs since I was 16 years old. Crazy right? I have worked at a law firm, in human resources, fast food, restaurants, call centers, retail, etc. Some of the highest stressful jobs out there, but being a mother tops it all.
"You should be aware that when a young woman has many little children, it can be a very difficult time in her life, especially compared to the relatively carefree life she enjoyed when she was responsible only for herself. It takes some character, some careful planning with your husband’s help, and some “nights out,” to get you through this time still liking the idea of home, families, and babies. You can’t turn in your mother’s badge just because the going gets tough." - Harold B. Lee
It seems there is rather a lot expected of mothers and there is. You have to cook (in my case my hubby helps with that a lot), clean, do laundry, run errands, attend appointments, pick up the many prescriptions Carter has, go to his therapy appointments, constantly straighten up and vacuum after the kids....it is tiring. I look forward to 8 pm so bad, it is my time to relax and try to get ready for the next day. I know people say to enjoy the time now, that you'll miss it. That it goes by faster than you think and all that. But honestly....I see no end in sight. Especially having a special needs kid. I don't see an end to the diaper changes, the baths, the getting up at night. It just doesn't seem fair. Most parents see somewhat of an end or progression to other paths once their kids are 18. Possibly going to college, getting married, going on a mission, etc. I don't know, I just feel really bummed out lately. I feel punished sometimes which I know is immature. It is getting harder to go out places and I find myself constantly being jealous of other families or parents with seemingly lesser problems. I meditate with food, it's true. It could be worse even though that isn't a good choice either. I found out I have hypo-thyroid so that might help explain why I'm more moody, tired and overweight. I thought when I was a mom I'd be fit and always dressed well. Ha! Little did I know.
Anyways, thanks for my occasional rant and pity party. Here is a picture to keep me on track.
Besides horse therapy, this summer I wanted to put Carter back into physical therapy at the IHC Taylorsville Rehab clinic. Once kids turn 3 they no longer get therapy through Early Intervention but in preschool. School is out and I wanted to keep him busy. The therapist had a lot of great ideas and was a wealth of knowledge as usual. This ball she used to sit Carter on and move back and forth and side to side. It is similar to riding a horse and works on trunk control. She suggested sitting Carter on a book or Tumble form wedge (picture below) to get him to sit forward more and upright. She suggested tying a band around his legs at the same time to keep them straight. He tends to sit a lot while leaning back and splaying his legs out. She said this is a very easy form of sitting. While he has strong abs, his back is not. She also wanted to figure out why he isn't bearing weight still. With his foot injury we still aren't putting shoes or anything on him, but she suggested braces that go up higher on his leg.
His hips were fine so she thought it was probably his weak ankles that were preventing him from wanting to bear weight or stand up. So with these braces he could possibly get better and we could try a gait trainer. I hope it's a good direction, I would like Carter to walk someday. We also discussed getting him to crawl properly instead of scoot. That back and forth motion can be hard to learn for kids like him. I am hopeful with weekly sessions and horse therapy that we can get him stronger in some areas. Once preschool is back in the fall, he'll be super busy doing that and both therapies.
Carter also saw his eye doctor, GI doc and dentist and good news there. We see Neurology soon to discuss his meds. Still no seizures!
We went to Lake Powell last Thursday thru Monday. Short trip, but long enough with kids! It took us over 7 hours to get there with stopping twice, and the kids did great with the drive. We took a barge to the houseboat First Run at Wahweap slip. This is a new houseboat share for my parents, and it was smaller than the last but newer and nicer. We had AC all night as you can hook up the boat to their stuff. We did one boat run then had dinner and got kids to bed. Carter did....well, horrible every night we were there. We tried to keep him quiet with toys in his own room like we do at home, but he woke up at least 4 times crying. Chris had to sleep by him to keep him quiet for everyone else. There are 4 bedrooms and we had him in this mini little cave room downstairs. It has a low ceiling and one bed on each side, with curtains to keep it private. We tried Sierra on the other side once but he woke her up. The second night we kept him down there alone, and Sierra in her pack 'n play in one of the bathrooms. Chris and I slept in the master, my parents in the front room or other bedroom. We did this arrangement 1 more night, then put Carter in the front room the last night. My brother and his friends slept on top.
1 night was so terrible because my dad didn't keep the generator on for the AC, so it was in the 90s and we could NOT sleep. Surprisingly the kids did, which worried me, but it was a long and horrible night. The days were in the 100s and so hot. Even the water was pretty warm. To keep the kids cool, my mom brought a pool that we kept on the back deck for the kids to play in. Carter only went in the lake once in a tube, and that didn't last long because he kept leaning forward. Made it hard to hold him and swim. He did great on the boat, always fell asleep right away with the rocking. We called him the nocturnal bat because he napped so much during the day. He was an angel during the day, but the nights were pretty terrible. I took Sierra on a tube once, and she enjoyed being in the water or the pool. She was everywhere so we had to emphasize to everyone- keep the doors shut! So scary to have little kids that can move at Powell. We had to be very vigilant.
The best parts were tubing, wave running (a new addition with this house boat), just boating in the canyons, swimming, watching the guys rock jump and put lizards to sleep. They do this by shooting them off the rock walls with water guns, then grab them and rub their bellies. They fall asleep on their backs, paralyzed. Then they return them to the water safely.
My dad also drove in the boat around us in the open water really fast, just doing circles to create huge waves. It is so fun! We call it the devil's cauldron. We also had a great time playing b.s. and spoons at night when the kids were asleep. We also floated on blow up mats and went down the slide on the house boat. Sunday evening I was out on the wave runner with my mom, and we hurried back when we saw lightning. Just before reaching the houseboat, the water became white caps and super wavy. It became a very windy storm speeds up to 60 we think. A few boats nearby us in Warm Creek were tipped over and ski boats were even halfway sunk. As soon as it calmed down, my dad and the 3 boys went off to help people. We ended up reuniting a mom with her son by driving her about 30 min. We were lucky that the houseboat didn't drift away and nothing was broken. The boys were all busy digging the anchors in deeper and tying everything up tight. It was an adventure of mother nature. We discovered that Sierra LOVES red vines licorice and has good sea legs. She can walk around just fine when the boat is swaying. So cute!
We did have an accident with Carter which was very sad. I was vacuuming the last day before leaving for home, and Carter loves to come up and touch it. He always gets close to it at home and nothing has happened before. I went to move it over his head, and when I brought it back down his little foot got sucked in for a second. Powerful vacuum! I pulled it out and turned off the vacuum, to discover his left foot had a bunch of missing skin. Poor guy! He only cried a little, and we hurried and cleaned it and dressed it up. He seems fine still but it still looks pretty raw.
We had a great time overall, good memories and great pictures. Glad to be home though doing piles of laundry. No sunburns either!
