Our family is half in Ohio and half in Idaho. Spring, Kyle and Dimitri are in a lonely hotel room far from home. Alan, Lauren and Sierra are in a lonely empty house at home. Sadly it's been an all too familliar experience for us all.
We are doing what has to be done and trying not to get caught on any of the lonely, unfair, angry, hurt, homesick, and irritated feelings that keep sweeping over us. That's what it comes down to for everyone though at the end of the day. I guess some have to not get caught by the giddy, crazy ideas that they get too anyway. It's hard and lonely. We hope this is almost done. We are grateful for the continued support of family and friends. We appreciate you staying by our sides even though these medical challenges seem to go on and on.
Alan left this morning at 7:00 am. Dimitri has talked about dad going to his airplane all day! He has talked about being "all done" with the hotel and Kyles doctors. He has talked about lauren and Sierra being gone " on the school bus" but he means he wonders where they are he misses them!
Kyle misses dad too. He was awake when dad left. Alan told him he had to leave and Kyle shook his head "no". He has been good today but he has asked for a lot of comfort things then refuses them. He isn't good at expressing his thoughts but he is confused at his homesickness too.
I'm really lonely but hanging on. I've not posted much so how could people know what is happening but now I'm sending an update out. The hardest part for me is giving myself a break. This skill has never been one of my strengths. When I had my children the doctors always emphasised how I have to take care of myself. Kyles cardiologist emphasised how we should take care if ourselves through that process too. This has been less life threatening but far more extensive, time consuming and draining than that yet these doctors don't talk about this as if they ignore it it will go away. I sure have met my match this time.
Alan is pulled in so many directions - work, me, the girls, the boys. He is pretty overwhelmed. Dons death still haunts him. His work schedule is strenuous. He wants to take a real vacation- next week!
Lauren and Sierra- they are patiently enduring this as well. They often let me see their biggest feelings (which is normal) and they wish this was behind us. But they are enjoying time with Grandparents and friends. This has made them grow up early and while that's not all bad and they may be grateful later for it, right now it is hard.
The daily time commitment each day is down to maintaince level - one hour a day for the rest of our lives. That's on top of all the other daily care Kyle requires. True it's better than two hours a day, but how can you sugar coat poo? It's a huge devastating new reality - Kyle will never be fecally continent. The silver lining for all you optimists- we can artificially keep him socially acceptable and eventually get him in underware not diapers through strict adherence to a bowel management program. Don't misunderstand me, this is better than chronic soiling, but I'd say it's more of a Brown lining than a silver one.
Kyle doesn't hurt now. The tube stitched in place is gone and his incisions have healed nicely. The fine tuning of his daily enemas is slow and time consuming. Each day his X-ray is clear of stool but each day he has accidents. So each day we trek back to the hospital for more X-rays and wait.
It's possible we can leave tomorrow. It's also possible we might have to stay till Friday or Saturday. We just have to wait and see. Many of you know - I love to wait.;) I definitely recommend all the control freaks in the world have a kid with a few of Kyles issues. It will cure you!
So while required to be in Cincinnati what have we done? We have gone swimming, worked out, gone to the aquarium, the Freedom center, the Harriet Beechers Stowe house, the Childrens museum, read books, watched TV and enjoyed a visit with Alans sister Nicole and her family.
Could things be worse? Yep!. Is it my favorite trip ever? Nope! Am I afraid of what will happen to my already taxed reserves once I get home? You bet! Do I want to go home and have the family back together? Indeed!
As a wise old dragon said, "there are no easy paths.".
Spring
