A Strange Anniversary

One year ago today, we received the news of Adelaide’s chromosome array and other genetic tests. You can read about it here.

 

Let me be honest and completely transparent: At the time, we thought the test results were great. Learning that Adelaide most likely did not have a degenerative condition was amazing news! Now we understand that they really didn’t tell us a lot. It would take tens of thousands of dollars to even have a 15% chance of figuring out what could have caused Adelaide’s brain abnormalities and hypotonia. Even if we knew, it would really only help with insurance claims and benefits. We will never know what Adelaide can and can’t do until she can or can’t do it. She is undiagnosable at this point. It makes insurance a nightmare and paperwork even worse.

Today, a woman in a waiting room said, “Wow. Your life must be really hard sometimes. It would be hard never knowing.” It was probably the best thing anyone has ever said to me upon hearing about Adelaide. I don’t usually acknowledge how hard it is to have so many things wrong with your child and have no answers, but it isn’t easy. Adelaide is doing well and progressing, but we don’t know just how far she will be able to progress before her body just can’t compensate for all the issues. So, today was a weird day for me. I can’t believe it has been an entire year. So much has changed since we received that phone call. But some things are still exactly the same.

Adelaide

Adelaide is just as pretty now as she was then… {heart-melting}

 

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