What is it like to live with someone affected by a chromosome disorder?

IMG_20180515_151525231Chromosome disorder awareness week is coming up, June 17-23 actually. This is something many people do not know much about. Even with my background in special education I had not a clue what the doctors where trying to tell me when we were given a diagnosis for Kenai. So, if someone actually straight asked me what our life looked like with this unique little guy, whether their question came from curiosity or if they happen to find themselves in a similar situation, this would be my response…

I am still somewhat new to this world, Kenai is only about a year and a half right now and I know a lot of unknowns are still ahead. I was in such a dark space when I was told Kenai was born with a 7Q deletion, which means when he was conceived, his 2nd copy of chromosome 7 somehow missed wrapping together in a spot, he is missing over 100 genes, that is a pretty large deletion, to this date I have not found anyone who is missing the exact piece as he is. There are however 34 other similar cases, that fall close to his deletion & I am grateful for those who have opened up to me along this journey, this journey set in a question mark, cobblestone path. There are so many unknowns, actually everything with him is an unknown and that was at first the reason I found myself in darkness, that was incredibly scary to try and grasp. I now personally find thisΒ  comforting though, because he has no set in stone limitations, he is “coded” in such a unique way, that he is living his life exactly as he is meant to live it, I just have to remind myself of that, sometimes more often than others.

I am the mother of 5, Kenai is our 4th. It has been extremely different having a baby who does not develop in the way his siblings have. It is hard on my heart, I would absolutely be lying if I did not admit that. It is hard at times to not look at others his age or younger who are up running around and not wish that for him. It is hard to have others look at us and wonder why he is so small, or why he is not yet sitting up, or just watch us from afar at all because I sometimes wonder what they might be thinking, those things are hard. It is hard to wonder when he will strengthen, when he might talk, what his life will look like, those things are hard. And our life has forever been altered. Our entire clan has entered a new space. But as hard as it can be it is that much more beautiful.

When he hits a new milestone, no matter how long it took to hit, it is honestly that much more beautiful. When I watch the special, unique bonds he has with his brother and sisters, it is so beautiful. When I watch his sweet nature, taking in the world around him, it is so beautiful. When I see the new light he brought with him that shines so incredibly bright, it is so beautiful.

I guess I am saying I would without a doubt tell someone, if they asked, that having Kenai in our family has been life altering. There are stormy days but they are always followed by a rainbow. I feel like our family hit the jackpot with the force that is this boy, we are so lucky to see this side of life, it is a side very few are able to truly witness. I look forward to every chapter. I don’t wait for a “what ifs” of a scary medical diagnosis, I wait for the triumphs and miracles that are in front of us, that we are watching first hand unfold in our home on a daily basis. This is what it has been like, for us, to live with someone affected by a chromosome disorder…or as I like to say “a funky 7th chromosome” πŸ™‚ .

Author: kasstu

I am a wifey & have been with my husband since 2001, we have 5 amazing kids who I have been able to stay home & raise. Life is a constant lesson & I'm thankful for the growth. Trying to remember to see the good in all things & to trust my journey. πŸ’š

4 thoughts on “What is it like to live with someone affected by a chromosome disorder?”

  1. Hi I am new to blogging and also have a child with a chromosome disorder. A lot of what you say rings true for me. My boy is a delight and amazes me every day. Sometimes it is hard to think what he might not achieve or understand but he is our miracle. So good to connect with people who understand 😁

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  2. I just stumbled upon this and I loved reading this, it’s so true! ❀ I have a 22 month old boy who was also diagnosed with a chromosome disorder – 4q deletion back in September 2018, and it’s quite rare as well. Everything you said above is exactly how I have felt during our journey so far. Even though the chromosome disorders are different between our two boys, it’s wonderful to read something I can completely relate to! I couldnt have said it better myself. Thank you!

    Like

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