Today is Rare Disease Day! Our rare disease journey began in 2016, when a routine 20 week ultrasound revealed a large growth on my baby girl’s abdomen, groin, and leg. The hospital we were sent to for further testing immediately suggested abortion, even though they couldn’t even tell me for certain what (besides the overgrowth) was wrong with her. After I declined, the doctor gave me “time to think about it”. We met in a small room and I again told her I didn’t want to abort. She looked at me with the most irritated expression and said ,”Your baby is NOT healthy Jill.” 3 more doctors would give me the same suggestion/irritation in the following months.
Fast forward 6 years:
The past 6 years haven’t always been easy.
But throughout all the hard times, we have witnessed miraculous events. We’ve felt immense prayers. We’ve relied heavily on God’s power and provision. We’ve seen Tessa grow and thrive. We’ve watched her whole-heartedly enjoy life. And we wouldn’t trade these past 6 years for anything.
Living with a rare disease means not having a lot of information. Not being able to google your symptoms. Not knowing what your future may look like, but knowing that more hard days will inevitably come. I’m so incredibly thankful, however, that I can trust in a God who DOES know Tessa’s future. Who understands my feelings about all the uncertainties. Who holds me in His hands when I feel like I’m falling apart. Who created Tessa’s body for a purpose. 💚
If you’ve ever wanted to donate to a charity, here’s a super simple way to do it: shop on Amazon.
Go to smile.amazon.com and choose Cloves Syndrome Community as your charity. 🍀 To those who have been doing this already, we can’t ever thank you enough! 🥰
Amen! Love our miracle girl💚
Love this and love that girl so much! She’s amazing and so are you:). ❤️❤️
A miracle and testament indeed – she was born for great things!
We will never forget the miracle she is!❤️