Feeling alone after recieving a diagnosis for your child

In the lead up to Keani’s birth I was so excited. I was prepping like I had with my three other children, gathering outfits, blankets & diapers. Getting his bed ready, thinking of all of the things we would be doing with him, having him home for the holidays and how cute all of the “1st” pictures would be, I am kind of a crazy picture-taking mama. I was also watching others around me having babies close to my due date, this included friends and neighbors. It was such an exciting time.

Kenai was born 5 weeks premature, and he was also born very small, 3lbs15oz to be exact. We were admitted to the NICU, this experience alone is isolating, but still there are many that have walked a similar path, and many I was able to talk to. This quickly changed when Kenai was 5 days old and we were told he had an extremely rare genetic disorder, so rare in fact it is a nameless condition, I felt completely alone in that moment, this condition was something I had never heard of before. I suddenly found it hard to open up and really talk to family and friends, I also found it difficult to scroll through my Instagram or Facebook feeds and see my friend’s babies home, no wires, no tubes, no looming questions. I cried A LOT, I have absolutely never felt as alone as I did in that time.

Once Kenai came home from the NICU and I started to get my “feet under me” a little bit I began to search for others who I might be able to identify with more closely than those around me. I can honestly say I have never been more thankful for social media than I am now. I feel like I have support, I feel like I can open up about our world , I feel like even though life can be unsteady we are absolutely not alone. Even though most of the friends I have found through social media are not living our exact 7Q deletion, I totally feel like we now have our tribe. I am able to turn to these women, these incredible mothers, every time we have a hard day, new things pop up, when I need advice and so on & I hope they feel the same. There are still times I feel alone, especially because our story is so unique but I no longer feel darkness. I know social media can receive a bad rap, especially lately it seems, but the internet can be such an incredible thing.  I can’t imagine doing this alone, I am so grateful that I will never feel that deep sense of loneliness again.

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. 💚

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