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Monday, March 24, 2014

The Ugly and The Beautiful

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....





2 comments:

Anonymous said...

I am completely clueless about blogs. But I am hoping you receive this message. I just ran across it in looking up VRK1. I love your postings and your attitude and will enjoying reading more when time allows.
We have a 13 yr old daughter we just received her xome test in Nov 2013 after waiting since submitted in February 2013. Ambry test said mutation of ZNF335 ...she is the only living case to date, another family lost 8/10 children in a generation under the age of ~1 year of age. 2012 reported. So today the geneticist said waiting for test on VRK1 deletion; we know she has a mutation in the VRK1.
I had wanted a diagnoses because I wanted a forum that we could relate with and everywhere I looked under her secondary diseases I would gather pieces of information but thought if we just "knew" there would be some peace. Now I know "we must create our own peace." Anyway I am glad to find another mother trying to make each day the best day, even with all of the trials. Thanks for taking the time to share Ian and your family life. Cynthia Hansen jcinhansen@msn.com

Anonymous said...


Jay Weiner Marci--As always, thank you for sharing. I'm sure you're not doing this just for us, but I think we're all better off for the fact that you've decided to do so.

Lauri Harf Greenberg Always thinking of you!💗

Stacy Berman Lunenfeld Thinking of you! Justin would love to come see Ian over Passover break if that's okay.

Tamara Jayne Flax Marci, you write so beautifully.

Benjamin Levey Thank you again for sharing with all of us Marci. Your thoughts, feelings, and words are so powerful. Thank you.

Marci Weinberg Scher Stacy Lunenfeld inbox me dates

Melissa Steinberg-Marasia You are a wonderful writer. Thanks for sharing your story. I love seeing pictures of your children.

Michelle Kampler Schwartz You. are. amazing.