My Story- Jamie

If you ever get a chance to visit Gardnerville, Nevada, do so. It is an extremely beautiful place. We sit right on the foothills of the Sierra Nevada mountain range and are only a twenty-minute drive up the mountain to Lake Tahoe. Oh, I guess I should explain who "We" are! That way, if you come visiting, you will know who to look for when you get here: "we" are James, Shaw and Jamie Lamb. We are not hard to miss! James and I are both in our mid-thirties and Jamie is eleven. Sounds pretty plain I know. The thing that will stand out is Jamie's midnight purple wheelchair. Jamie was born with Spina Bifida and Hydrocephalus. He is a T-9 paraplegic and has no feeling or movement from the waist down. Add on chiari malformation, clubbed feet, dislocated hips, neurogenic bowel & bladder, 18 surgeries (two of which were 14 hours long) and the kindest, most beautiful soul you know. He is quite a work of art. Jamie is an only child, unless you count Fred (the dog) & Kittybaby. They are his furry siblings and they mean the world to us. They give unconditional love and that is one thing that this family can never get enough of. If you are a caregiver to anyone of any age, I strongly suggest a furry friend in your home.

No two people born with Spina Bifida are the same. Jamie has the most severe form, myelomeningocele. Most children with SB are able to feel or move at least a portion of their lower bodies. They use braces, crutches or walkers to maneuver themselves around, using wheelchairs for long distances, like when Mom drags them out shopping for school clothes. Since Jamie cannot move at all, he must rely on us, his parents/caregivers, to maneuver him outside of his wheelchair. Due to this, he cannot just jump up and get out of bed in the morning. He must have help. Before transferring from bed to chair though, he must be changed and dressed. Jamie's bladder has not worked since birth, so he cannot control his bodily functions. He has always worn urinary incontinence underwear (diapers for short).

Getting dressed is another thing Jamie must have help with. He can put his own shirt on, but we must do everything else. This is not by any means an easy task. Jamie is 95 lbs and 52 inches long. It is a struggle to dress him at times; turning back and forth, forward and backward, go to that side, now this side - he has learned some really choice words from us dressing him in the mornings! Oh well...at least he doesn't use them himself.... that I know of. Then Jamie is off to the bathroom to brush his teeth and hair, wash his face and stare at himself in the table mirror. We are not the only ones that think he is beautiful; he takes after his father in the primping area. His fine motor skills are not the best, so brushing his teeth and hair can be a bit messy. We've tried electric toothbrushes, but he doesn't like the noise they make.

Next is Jamie's most favorite activity.... eating! I don't know how it's his favorite since he barely eats anything. Don't get me wrong, his eating skills are good, it's what he eats that gets us. From talking to other parents of children with Spina Bifida, our kids seem to have a strong dislike towards fruits and veggies. From what we as parents have gathered, we think it's due to the texture of the foods. When they were babies, they ate jarred baby fruits and such, now none of them eat fruit or veggies without gagging on them. Our SB kids have heightened gag reflexes, so any minute amount of gagging, turns into a bout of vomiting. It's extremely lovely at breakfast time. So, Jamie usually gets ramen noodles or spaghettios for breakfast. Sometimes, his father can get him to eat a bowl of Cheerios or Rice Krispies...but that's rare. This is also when he takes his daily vitamin and prescription strength antacid. After breakfast, it's time to pack the supply bag on Jamie's wheelchair. This bag contains diapers, wipes, non-latex gloves and a chux pad. Jamie is changed once a day at school in the nurse's office. Then we load the backpack with homework and lunch. Jamie rides the special-ed school bus, so it stops directly in front of our house. Just this past year he has gotten to the point of going to the bus "on his own". A huge step for Mommie, (boo-hoo)! While Jamie is loading onto the bus, Fred the dog watches from the living room window. He waits all day for "his boy" to come home. As soon as the bus leaves, I usually flop on the couch for a while, letting my low back recuperate.

We usually have laundry everyday. With Jamie's bladder being the way that it is, his bed is wet with urine in the mornings. So, it must be stripped, sheets washed and remade daily. If there are places that we need to go to, this is when we go. We love taking Jamie with us, we are a together kind of family, but there are some places we go to that cannot accommodate a wheelchair. Sure, they may have a ramp and a handicapped parking place, but get inside and the aisles require you to be as narrow as a supermodel! Jamie in his chair, well it's like a bull in a china shop. Talk about stress!!

We know that a big yellow bus has pulled up in front of our home when Fred is running in circles and jumping in and out of the window. "His boy" is home! As soon as he is safely off the wheelchair lift, we open the door and out shoots Fred to greet his boy. Pretty heartwarming don't you think? Like something out of "Lassie". Jamie is just like any other kid coming home from school. No "Hi moms" or "Guess whats?", it's always "What we got to eat?" He sits and has a small snack and watches a cartoon or two. About this time, the neighbor boy raps on the door wanting Jamie to play. Jamie doesn't have friends per say. He has acquaintances at school, but nobody he can really call a friend. At eleven, most kids are running to the local 7-eleven or riding bikes or skateboards. They don't hang around to play with Jamie, so he ends up playing with much younger children. And, they are always at our house since every house in our neighborhood has step(s) to the front door, which he cannot get over to get into their houses. This is usually when I am calling for CALGON to take me away!

After the little lovelies leave (yeah!), it's time for homework and dinner. This is a big, big fight. Jamie has some learning disorders and thirty minutes of homework usually takes us around two hours. When my blood is at boiling point over homework, Dad is called in to relieve me and vice versa. We have to take turns, or else Jamie's home education would suffer terribly.

After homework, he either gets to watch TV or if it's a bath-night, he takes a shower. This is a 'big' chore. Jamie's bowels are not like the rest of us; he has what is called an Antegrade Colonic Enema, ACE for short. This is a small opening in his abdomen that is connected to his upper colon. We have a very tiny bathroom that does not enable Jamie to transfer, so James and I must lift and carry him to the toilet. Once he is situated on the seat, his balance is very bad; we fill a non-latex enema bag with 600 ccs of warm tap water. We hang the bag from the shower rod and Jamie then attaches a catheter to the tube on the bag. I then insert the catheter into the ACE and Jamie opens the bag and the water rushes into the upper colon and whatever is in its way is washed out through the anal opening. Jamie has had severe constipation for over ten years. We tried other bowel programs, to keep his system moving but they just did not work. He had this done and now has only had two bowel accidents since the surgery. Before this, we were having to clean his bowel manually, with a gloved finger and digital stimulation, but never got it all out. Since using the ACE, Jamie's tummy has become less bloated and distended. After the water is emptied out of the bag, Jamie must then sit on the toilet for one hour. He has a Gameboy, a tape player and books to help pass the time. We have to do this every other night, which Jamie doesn't like, but when he is older, he will appreciate it.

After the ACE, Jamie gets a shower. Because our bathroom is small, we cannot use a regular shower bench in the tub. We use a portable toilet that has an arm that slides down. There is no way to lift him like they teach you, you know, no twisting at the waist, lift with your knees, etc. and get him from the toilet to the shower chair. It is one heck of a sight to see! I'm between the toilet and the tub and James has one foot in the tub, one foot on the floor. Jamie uses a hand held shower attachment and tries to do a pretty good job, but requires just a small amount of help from whoever is standing there. By now, James and I are both looking for our "Doan's back pills". Our low backs are just screaming but we're not done yet. When Jamie is finished bathing, we must again assume our positions and lift him from tub to chair, wet and all. We wheel to the bedroom where we again, lift Jamie from chair to bed. We put a clean diaper on him and by now it's bedtime...for Jamie. James and I still have to eat dinner, take our showers and clean up the house from ACE/bath time. It's a lot to do, but when it's all you've known for eleven years, well by then it's pretty much routine.

We don't know what it would be like not to have to drive 300 miles one way for umpteen doctor visits (UC SanFrancisco), medications, pharmacy trips, fights with medical vendors, etc.; that to us is normal. What would be weird is to be able to go off for a weekend or an evening alone. I think it's happened once since Jamie was born. We don't have little league or soccer, but we will drive for two and a half hours to get him to the Tahoe Adaptive Ski School in California, we will take him bowling (which he loves!), swimming - anything he wants to try, we are game. This little boy, excuse me, young man, is our only child. He is so absolutely extraordinary in our opinions, even though we may be biased. We would not trade him for all the working legs in the world. To us, he is perfect, just the way he is...and we are so lucky for the chance to have him in our lives. He's got a beautiful smile and a gracious personality! What more could you ask for in a child?

To end this little story of our daily life with Jamie, I will share two of his favorite jokes with you (it's the only ones that he knows and he insisted they be in this story):

What do you call a cow that goes from one farm to another?
A "moooving" cow! (laughter & applause here)

What did the Pacific Ocean say to the Atlantic Ocean?
Nothing, they just "waved"! (Isn't that cute?)

If you drive through Gardnerville on your way to Reno or Tahoe, don't forget to wave!

Shaw Lamb