Most of my posts are updates on Ian and our family but I have not really gotten down to the ugly part of VRK1 or having a child with a life-threatening illness...there are so many ugly parts about it but I also want to point out there are many beautiful parts of it.
Over the past years, we have gone through many changes as Ian has gone through many changes. We have gone from a family of four who went out with friends to restaurants, to each other homes for "play dates"...pick up your kids and just go....as easy as 1, 2, 3 in the car and out the door. As disease progression became more apparent (and we had no idea what was going on) we were still able to go out and do; even a wheelchair did not stop us. We went. Oh how the times have changed, it is not as easy as 1, 2, 3 in the car and out the door any more. Some of it is that Ian does not like to go out, he prefers to be home; now we barely go out, when we do it is rarely as a family of four...most of the time friends think we are "too busy" to do anything...not realizing we are home watching TV with Ian, having a family movie night or game night....we could and love to do that with friends as well. You hear of friends celebrating each other B'Nei Mitzvahs, going out on dates with their significant others, going to family events with each other....you are jealous, lonely....we feel guilty, jealous, lonely....we have learned this does not make us bad people, parents, or significant others - it just makes us human. It makes us realize the ugly parts of VRK1...what it has robbed us of, what it will continue to rob us of. But it makes us realize the beautiful part of VRK1...the people who have come into our lives who would not have if it weren't for VRK1, the things we have been able to do because of VRK1, advocating for rare diseases, the closeness it has brought to our family.
Thinking back to when we first got together, 19 years ago, who would have thought we would be here...thinking back to when we were in college and friends, what we imagined of our lives (regardless of who they were with), married, kids, spending time with our family, friends, celebrating, ...all the things people do...couldn't have imagined our lives now. When I got pregnant, found out we were having twins...we never thought...but wouldn't change it. A lot of times you hear people say...all I want is a healthy baby...well what are you going to do if you don't get a healthy baby...regardless of health...love your baby/child. Yes, it's hard, no it's not hard, yes it's lonely, no it's not lonely, yes we worry about Ian, no we don't worry about Ian, yes we worry about Becca, no we don't worry about Becca, yes we worry about each other, no we don't worry about each other...are we making the right decisions...I know these are things everyone thinks about...but ours is double, triple...still part of me would not change it, part of me would...that only makes me human.
Thank you to everyone who is in our village, who has helped to make the double and triple a little better. There are many people who have come into our village who we never would have met with out the ugly part of VRK1...to help make it the beautiful part of VRK1.
As I was finishing up this, I received an email from Ian's teacher as they were working on anti-bulling this week. They used Ian as an example and this is what they has to say about him....