An Act of Go…oogle

Every now and then, I’ll get a notification from WordPress that someone has commented on my blog.  Most of the time, it is a comment on one breakfast recipe I posted like two years ago (everyone likes it, except for one lady who told me it was a waste of time and money – oops) or else this one on wine and cheese, thanks to Pinterest.  But the comment I want to talk about today was different.

It was from a man named Ruslan who lives in Russia.  His newborn baby daughter had been diagnosed Trisomy 12p, and he was trying to find information.  I’ve mentioned the rarity of Teagan’s diagnosis before, and the lack of easily accessible information – those of you well versed in SEO will know that for my itty bitty blog to show up in search results, there must REALLY not be anything out there.

Anyway – in his comment, Ruslan stated his situation and asked if I would please email him, as he and his wife had been unable to find much information or guidance in Russia.  Surprisingly, although I was thrilled to get his comment, I was nervous about writing back.  I long to bond with other parents in my situation, but now that the opportunity was staring me in the face, I kind of froze.  What do I tell him?  How do I portray the difficult road that is our life, coupled with the joy Teagan brings me every single day?  How do I offer him support from this far away, and when I know nothing about available resources?  What if I can’t help him?

When I did email him back, we shared the stories of our daughters and other children.  We lamented living in places where it snows in April.  Thankfully his English is better than my Russian 😉  My heart went out to him when he mentioned that he and his wife felt they were on their own because they couldn’t find many resources or anyone who could educate them:

“The geneticist whom we approached for consultation couldn’t even give us a hint about this syndrome. He said in his career we were the only family with such syndrome in Russia. And this guy is a super experienced geneticist in one of the best clinics in Russia. I guess we’ll need to be on our own now.”

I remember all too well those first, super difficult days, when no one will give you a straight answer about what is to be.  And when you feel so alone because your teeny tiny baby has some crazy condition called Trisomy 12p and WHAT the hell is that?!  Hard to believe I was first asking myself those questions two and a half years ago.  Feels so far away, yet somehow like only yesterday.

Different countries, similar weather patterns??

Teagan and Ruslan’s daughter have some similarities rooted in their trisomies, and some differences.  They both had a hard time sleeping (even more than what you’d expect from a new baby) and eating, as well as low muscle tone, which leads to issues with basically anything muscle related – delayed rolling, crawling, walking, etc.; this is also the reason for Teagan’s two lazy eye surgeries.  So far Ruslan’s daughter is seizure free – join me in crossing your fingers for them!  They had some success with a massage based therapy, which we heard of back when we were first diagnosed but didn’t try.  They are still in the early phases of tests and scans and discovering what all has been affected.  Luckily, one thing is for sure – they both have parents who are working hard to give them the best life possible.

I told him about Teagan’s history.  How we tried to make up for the low tone with muscle strength through physical therapy.  About epilepsy and organ tests and all the progress she has made.  And mostly, I tried to be supportive – I tried to be the friend I wished I had when I was new to this situation.

When I asked Ruslan if I could share this story on my blog, he pegged my thoughts exactly:

“I don’t mind if you write about us on your blog.  I think people who might have faced similar problems should know that they are not alone in this world and that there are a lot of other stories of real people who are lucky to overcome the challenges you and us have faced.”

Word my friend.  Two and a half years after our diagnosis, our family has finally found a friend who knows how we feel.  They are on the other side of the world and speak a different language.  All it took, was an act of Google.

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