I'm writing this post about amazing parents that I met yesterday. I look up to them and learn from them and grieve for them. They are Jeannette and Steven Adamyk. I believe I started talking to Jeannette when Kaleb was around 5ish months old through a Trisomy group on Facebook. She also had a son named Caleb who was born with a Trisomy (T18, Edwards Syndrome). I found out that she lived close to me and I knew she could help me on my own Trisomy journey. Since Kaleb was born I feel that all Trisomies are the same regardless of the name given to them or the chromosome number they represent because to me "trisomy" is just a name for many different medical and development issues that a child with Trisomy has. I do know that Trisomy 18 is one of the scariest and for a short time was told that was most likely what Kaleb had and that I should think about terminating my pregnancy because those children are "not compatible with life". Jeannette has spent so much time and research to show doctors and others that work with our children that having Trisomy 18 or any Trisomy is not something that automatically means that our children will pass away right after birth. I admire her and respect her. She recently lost her wonderful son, his third birthday was coming up. Caleb means so much to so many people and shows the "medical professionals" that they should not be labeling these babies as "not compatible with life".
What does that mean anyway? The phrase just pisses me off to no end.
I can't imagine what she and her family are going through right now but she has given me so much hope and comfort whether she knows it or not. When I first spoke with her on the phone months ago it felt so nice to hear someone talk about the same problems in the government that I had dealt with as well when Kaleb was born, especially when it comes to disability benefits for our children and the fact that we can't get those unless we quit our jobs and live off of the government, which to some of us is not an option.
I am behind Jeanette 100% and plan to write an information letter about Kaleb to send with Jeannette when she goes to our capital in October to speak about the additional help our children need and they are not currently getting.
Me and Jeannette
Kaleb and Jeannette sharing a moment
Such a happy little boy, Caleb <3
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