The Way We Are

There is lots of discussion on a short-gut email list that I'm on right now about just how awful life with sbs kids are, for both the parent and the child. These are mommies who love their children with all their hearts and are just overwhelmed with the care that they require. I must admit that we've had those days when we are overwhelmed and scared and worried, but in all things we try very hard to remember what we set out to do - make every day that John has the very best that it can be, no matter how many or how few days there are, and no matter whether we are spending those days like now where he is well and at home doing great or whether we are spending those days with him sick and in the hospital. I will always remember what the pastor who cared for us while we were with John in New Orleans told us. His words of comfort and of encouragement helping us to remember that we are not going through this just for John or for us, but that we are to remember those around us wherever we are and that they need our care too, and the Word of Christ that we have to share with them. Now religion is not easily discussed or brought up on the short-gut email list, but these words from Big Bird seem appropriate ...

"So maybe when we think about it, what's really best by far, is finding out what's good about being the way we are." That is our goal for John, despite all birth defects, physical handicaps, medical fragility or whatever happens or comes along we hope to each day teach him to accept who he is and be happy inside.

Just like Daddy?

Can you tell that he watches his dad put his collar on a lot? Well if you could see around his neck you would see that he has a long piece of toilet paper that he's folded down to be collar-sized and he's fastening around the back of his neck, just like daddy.

Zipping to the Back

John and his chair have been quite the adventure. Each new day brings with it more skills at driving it and more desire to go faster and faster all the time. He has now mastered top speed through the house and has realized that if he slows down on the corners and goes fast on the straightaways that he doesn't get yelled at so much.

The adventure took a new turn this evening. Our Jeep, our only vehicle, died and is waiting for mechanics to work their resurrection magic so we are afoot, well Mark and I are, John is a-wheeled. Tonight we had him ride along with us as we walked to church. At first he zipped off and left us, Mark used that volume and tone that only a father can achieve and John stopped dead in his tracks and waited for us to catch up. Then he was to hold daddy's finger and stay with him. So he buzzed right past Mark, grabbed his finger with his best death grip and took off at top speed. That voice again and again he stopped. I thought I was going to roll in the street laughing. John stopped to watch the birds and then zipped down the road, stopped to see the manhole cover and zipped, stopped to say hi to the tree that he likes, then zipped. It was a real adventure. At church he impressed everyone with how fast he can go, or scared them, but his control of the chair did actually impress them. At the end of service he was so ready to go, but sat there as told and patiently waited for daddy to say he could go. When the word came John zipped out of the sanctuary at top speed, we all wondered what he was up to, he turned a huge and very fast circle in the parish hall and then parked himself in the middle of the door leading out of the sanctuary before the first person could get to the door. As the first person got to him he stuck his little hand out to shake hands, and proceeded to shake every hand until the church was empty, Mark's and mine included, then he was done and ready to go. There are moments that your child just makes your heart soar, Mark and I were both having that moment as we reached down to shake the little hand that was offered so politely from the boy with the biggest grin in the world.

Mark had to stay at church for confirmation class, leaving John and I to walk home in the growing dark alone. Mark told him that he was to hold my hand and go home like a good little boy, and for the most part he did. There were a few false starts, a few abrupt stops but all in all he came home so well, I was very impressed, he even came up the 3 ramps to the front door without my help. Tomorrow we are repeating this adventure somewhat. John and I will go down to church for the lunch and then come back home again. I'm guessing he'll be even better at this tomorrow.

Mark and I are almost brave enough to have him out in public by choice, as opposed to now which is more by necessity, by the time we can afford the carrier to put on our hopefully soon-to-be-resurrected Jeep, we should be brave enough and John will be so good at this. I can't wait to see him at the zoo, at the mall, at all the places that we go, but wait I will, and enjoy the walks tomorrow with my awesome little boy.

Need For Speed

Yesterday we took John outside in his chair for a walk around the block. He took the ramps out a little slow and cautious, as well as the end of the driveway and a couple other places. But outside we turned his chair up from Indoor to Normal mode and the speed up to 3, this is the max that I can walk sustained, and he still has 2 more speeds up to go. John LOVED this, the speed, the open, the speed, the outside, the speed, did I say the speed yet. Well this morning not too long after he impressed us to no end by leaving the table, going and opening the pantry, picking up a liter bottle of Smart Water by the cap, closing the pantry door, and then bringing the water bottle and his cup back so that we would give him more water, he decided that he had the need for SPEED and turned his chair up to Normal 5, in the house this is scary, but not for John, just for us, silly boy. At this moment his daddy is getting his warm boots and coat on so that he can go out and around the block again, the boy needs SPEED, I'm so glad, it's awesome to watch.

So I'm updating this post about an hour after the original paragraph. We took John out again and this time around part of our block Mark let him open it up to 5, which is fast enough that Mark has to jog with him, and Lucy (the dog) and I watch them disappear. He totally loved this. Then we let him, on a slower speed, take it about a half mile through town. He loved this too. We obviously have some work to do on stop signs, crossing streets and what to do when cars are coming, but we were both rather impressed. Of course then when we got back home and both Mark and I were busy getting stuff ready to leave for therapy today we heard crashing and booming and there was John, with his chair on 5, speeding through the house and into things as fast as he could go and with a grin nearly bigger than his face.

Cutting with a Smile

As I was making green beans for lunch this afternoon John came to help. First he broke the ends off the green beans, he's pretty good at this job. Then when I was cutting up the pepper he had to help more. So he zipped off and I heard rattling behind me, then he pulled up beside me with a table knife and a cutting board, out of two separate drawers, and proceeded to help me cut the peppers. I couldn't have asked for a more cheerful helper!

Pondering and Good News

But Mary treasured up all these things, pondering them in her heart. Luke 2:19 As often as this verse is used in Christmas programs and readings, as a kid I never really got it, so she pondered and treasured, lets get on with Jesus. As a married adult I realized a small bit of what Mary was thinking as people came to tell me how comforting it was to have Pastor with them when their loved one was ill or dying. As a parent I really understood that this was no throw away verse (like any of them ever are) but that it was a glimpse of the humanity, the real mommy that Mary was. Through the years with John people have told me things that I have always held onto, often times when I remember those statements I remember them in a visual, audio way, both seeing and hearing the person in my minds eye. This weekend I received two gifts to treasure and have already pondered them much, and will surely ponder them often as the years go by. The first was told to me by Baker Chick #3's mommy, that this little Chick whom John has such a great time with was telling her grandma how sweet and nice of a little boy John was and how much she liked him and all the things that they do together. As the mommy of a little boy who is often thought of as a patient, or as handicapped, or disabled, it is a golden treasure to hear the words of this precious child describe my precious child as a little boy, to talk about him in such a normal way, a treasure to my mommy ears. The second treasure that I received to ponder was given by Dr. Mercer, the new doctor that took over the Intestinal Rehab Program in Omaha. In the midst of a conversation about John and trying to get him off of some of the meds that he is on he said 'he has a good, long life ahead of him' and then went on to talk about some med changes that we are going to try. To a mommy who has heard over and over many times the news that her son will not live, won't have a good life, won't be able to do this or that, those nine words will be treasured and pondered as they often repeat in my head.

The rest of John's clinic visit was great too. The little boy is now 14.25 kilos, that's .75 kilos weight gain in that past 6 weeks, about 1 pound 10 ounces. John's labs were exactly what they should be and we don't have to go back for 2 whole months. That is the longest John has ever been scheduled between GI appointments. During this two months we are going to be weaning him from Prevacid, hoping that if he needs an antacid he can be put on Zantac or something even lesser, one that doesn't have the bone loss side effect that Prevacid can have. The other thing we will be doing is seeing if John can get off of his high powered antibiotics that he takes for bacterial overgrowth. Actually with that we are going to take him off those antibiotics and if he does fine then let him be, and if he doesn't then they are going to do a scope on him when we return to Omaha in March and culture what is growing in his intestines so that they can more finely tune his antibiotics for him. The philosophy of the docs is the less meds the child is on the better, goes right along with our philosophy too. We are looking forward to what this two months brings.

2am is morning, Mom.

Last evening before John went to bed we told him that today we would go and get his finger poked (have labs drawn) and then we were going to see our friends. He asked us a couple times to confirm that we meant in the morning and we told him yes. By 7:45pm he was sound asleep, at 2am he was wide awake, talking and turning his light on and off. I went to check on him and see what was going on and he needed a drink, then of course he needed to sit up, and then after a big slug of water he told me 'bath' 'friends' and was so hurt and disappointed when I signed to him that it was still night time and bed time and that he was not going to go take a bath now, but that he was going back to bed. At 3:30am Mark finally went in and took his light switch from him and told him to go to sleep that it was night time, not morning. I finally heard him settle down and go back to sleep when the clock said 4:30am, silly boy, I'm sure if I had a nanny cam in his room I would have seen that he was laying there amidst all the jibber jabber signing friends, go, jeep, now, and such things. This morning he is awake, finally, and signing, 'bath', 'friends', 'go' in rapid succession. Ah it should be quite the day!

Too Silly to Smile

I was trying to get a good picture of John in the new sweater that his Grandma made for him, but he was just too silly to smile nicely for the camera. The sweater is perfect, warm, long enough, pretty and yet boy, thanks Mom!

We are headed to Omaha on Monday to get to enjoy the company of the Baker family and then off to John's clinic appointment and back home on Tuesday. Until this afternoon when he threw up, due probably to things working a little too well and being constipated, I was fantasizing about not having to go back for an appointment for 3 months. We've given him more prune juice, and while I'm not holding my breath I'm still hopeful. This six weeks has been great, he has done so well and is actually back to the point of sleeping through the night again, we'll just have to see what they say when they see his royal silliness. We've finally gotten over the holidays and all enough that I have a school schedule written out for him for next week, who knows how much of it we'll get done but hey that's farther than we've been this past month. Thankfully school isn't compulsory until he's 7 and by gosh and by golly we shall get there and through it.