How Having A Child With TSC Has Changed Me

Thursday, May 15, 2014

Today is Tuberous Sclerosis Complex Global Awareness Day.

All week I have been trying to think of what I want people to know on this day. Obviously I want people to know what TSC is (if you don't know, click here).. but I also want people to know how having a child with TSC has changed me..

Having a child with TSC has made me a more compassionate person. Sadly, I use to be quick to judge others. Then my child was diagnosed with TSC and my eyes were opened to a whole new world. A world filled with strong individuals that may not look "sick" on the outside but inside are fighting off something that they cannot always control. These days when I see a child having a meltdown in public I no longer think "man, what a brat those parents are raising!" I now realize the child may have sensory issues like Joel, and being in stores or large crowds may be overwhelming for that child. He/she may not know how to focus or process everything. It can cause what looks like a tantrum or (usually in our case) it can cause the child to be very hyperactive.

Having a child with TSC has taught me to celebrate every day. We know tomorrow is not promised for us, but the reality of that never hit until my child was diagnosed with epilepsy and TSC. Every day I am reminded to celebrate every breath, every step, and every word spoken because in an instant TSC and/or his epilepsy could steal it away us.

Having a child with TSC has made me want to change the world. Before having Joel I never really paid attention to politics or medical challenges that families face. These days I know more than I want to. Meeting political leaders that would rather fund bike paths for our state than help fund medical research that could save many lives (true story)... and meeting families that are having to celebrate their child's birthday in a hospital, unsure of when they will be able to leave... those things break my heart but also encourages me to continue being an advocate for Joel and others. I may be a stay at home mom but I still have a voice and I refuse to be silent! I would have never said that before I had a child with TSC.

Genetic Testing Round 2

Wednesday, May 7, 2014

I met with a genetic counselor to discuss genetic testing for our second son, Aiden, that is due in August. {Click here to read about Joel's genetic testing results.} Going into the appointment I wasn't sure I would learn anything I didn't already know, and I was right.. but something good did come from it. The genetic counselor, Dr. S, suggested we do testing on Aiden just a few weeks after he is born. I agreed because it would be nice to either have peace of mind early on and know that Aiden does not have TSC or know early on that we need to see a specialist as soon as possible. The giant we have to face in the meantime is our insurance company. Dr. S will have to submit a letter to the insurance company (probably after Aiden is born) that states the medical need for the testing, which at this point is just family history unless Aiden shows signs at my 30 week ultrasound or after birth... The insurance company will then review the letter and either chose to approve or deny the testing. We really need them to approve it because if not it will be very expensive. Please continue to keep us in your prayers, and keep your fingers crossed that the insurance company will approve the testing after Aiden is born!
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