A special Tuberous Sclerosis encounter in the hospital

I have been wanting to share this story with you and since today I am so  exhausted I am having a hard time thinking, today is the day you get to hear about my recent encounter with another Tuberous Sclerosis family.

While in the hospital during Tiara’s last visit, I received an email message sent through my blog.  I love when I get those and am always excited to read them.  As I stood in Starbucks waiting for my coffee before returning to the hospital I started reading the message.  Tears instantly came to my eyes as I read about a beautiful 2 month old girl who had been diagnosed with Tuberous Sclerosis in March of this year.  This sweet baby had already endured a brain surgery, removing almost the entire right frontal lobe of her brain and has more TSC involvement in her brain, heart, kidneys, eyes and skin. 

This Mom was Googling every question she had about Tuberous Sclerosis while trying to make sense of this devastating diagnosis when she happened to find my blog.  As she read about my Journey with Tiara she realized her own journey would “hellish and heart breaking” but she wasn’t alone.  She knew after what I have been through with TT, she too can find the strength to care for her daughter and do everything in her power to give her a better life. 

It is hard for me to explain how touched and honored I am to know that my blog helped a new family struggling through the initial terrifying reality of a Tuberous Sclerosis diagnosis.  It made me feel like, this is what I am meant to do, this is my mission in life.  I can help other families from my home while caring for Tiara, such a gift. 

When Tiara was a baby I used to visit doctors with Tiara strapped to me in the Baby Bjorn and pass out information about Tuberous Sclerosis.  I used to meet regularly with other parents for a support group and be involved in the golf tournament, Comedy for a Cure and plan the annual picnic..  But as time has gone on and Tiara’s condition has worsened I have dropped all my TSC charity work except planning the picnic in the summer.  I feel momentary guilt over this at times but ultimately I know I am more needed here than out raising money for TSC. 

Back to the family……

I immediately emailed the Mom back and asked if I could come visit her since Tiara was also at CHOC, just like her daughter.  I heard back from her later that day and was able to visit when my Mother in Law showed up to see Tiara.  I was surprised when I saw her daughter lying in the crib because she looked absolutely perfect.  She was wearing an adorable pink outfit, had a music playing on her crib and was kicking her feet.  She didn’t look sick, she looked like an angel.  She reminded me of when Tiara was a baby, because she too used to look like every other baby.  Cute and adorable not sick with seizures and tumors in major organs.

I met the Mom and Dad and knew instantly they would be great TSC parents.  In the medical world I have heard from several  doctors, that TSC parents tend be very educated and astute about their children’s diagnosis.  They get involved and never turn back.  I could tell these parents were just like that.  Smart, kind, involved and ready to fight for their daughter’s health. 

We talked for a while about their daughter and the different resources available to them.  They had a great neurologist, had met all the other subspecialists and had already been in contact with the TS Alliance.  They were planning on attending the Walk for a Cure in Long Beach this month and I invited them to the picnic I have planned for  August 25, 2013 at Mason Regional Park in Irvine.  They had been reading everything available to them on the internet and even though they were scared and sad, they appeared strong and confident. 

This family made me wish I could personally meet and touch more families with TSC, so it looks like I will continue writing mostly about Tiara.  I have noticed that when I write about Tiara in the hospital and her struggles my numbers skyrocket as opposed to when I talk about recipes, health, or my other girls.  I will still continue to talk about my entire family but it seems as if I am most needed in the TSC community so I am following my readers lead.  You like to hear about Tiara so she will continue to be my main topic of conversation in most of my posts.  And last but not least, if you are a new TSC family or just a TSC family that needs some support or guidance, please email me at tiffani@tiffanigoff.com and I will give you my phone number. 

Funny enough I like to talk more than I like to write and I am always open to meeting new families via phone, dealing with the same issues as me.  We are in this together.

 

xoxo tiffani