Where we are with TS
A little about our current reality with TS- the stuff I don't blog about much-because its ugly and hard.
Today as I drove home with both girls in the car Emmaus got upset. I really have no idea about what. One minute she was happy and smiling and the next minute she is freaking out.
When I say freaking out I mean beating herself in the head (no- not patting her head, but literally beating her head with her hands or fists) pulling out her hair- (she literally has a bald-ish spot on her right side because she does this when she is upset) and then biting her arm. She BIT HER OWN ARM FOR A MINUTE STRAIGHT- I was afraid she was going to break the skin!
All the while I am nicely asking her to stop- asking her what is wrong, trying to appease her with her favorite music- and praying to the Lord that she would stop. Stop because my heart is slowly breaking as I watch her physically hurt herself because she is upset.
She has few words. And none to express frustration. And her mind doesn't handle being upset like the average two year olds does.
ALL BECAUSE OF TS
Since her surgery I tend to say "She is doing SO well" when people ask how she is. Because truth be told she is! She is developing! She isn't seizing multiple times a day-heck she isn't seizing multiple times a week. She is walking around furniture, she is walking if you hold her hands- and while I think it will be a bit before she walks on her own- she is progressing!
WE ARE SO PROUD OF HER.
Sleep is still a challenge. Thankfully due to a stricter routine she is napping better- nights are still a crap shoot. Bedtime itself is much better- but rarely does the girl sleep through the night. A few times a month she blesses us by sleeping all night. And then a few times a month she blesses us by EXTRA quality time and stays up all night long.
Generally we feel like our lives are kinda normal. But then there are times when we notice she doesn't play with her peers the way she should. When we wonder how much she understands when we talk to her. When she hurts herself while I am driving and I am unable to intervene, that we realize we are still in a battle with Tuberous Sclerosis.
It didn't end with brain surgery.
Brain surgery wasn't curative medicine. It was palliative medicine.
(Palliative- to reduce the severity or symptoms of a disease)
There is no cure yet for TS.
Which is a harsh reality for me.
We are thankful for our sweet girl. For the unconditional love and wet kisses she has given to her sister. For her snuggles-I seriously watched her crawl onto the lap and snuggle another mom she has met twice today! She is a love bug.
But we know TS is still with our sweet girl. So while we say "She is doing really well" cause she is- we say that meaning- in the scope of having a disease without a cure "she is doing really well".
We have a long road to go. But it is a blessed road to walk with a sweet girl.
Our TS walk in in two weeks. Would you consider donating to help us move forward with research to find a CURE for this disease? A cure for Emmaus.
HERE is my fundraising page for the TS walk. I am way short of my goal- cause I kinda just had a baby and made my already crazy life a bit more CRAZY- so I slacked on the walk fundraising this year. Any donations would be GREATLY appreciated!
Today as I drove home with both girls in the car Emmaus got upset. I really have no idea about what. One minute she was happy and smiling and the next minute she is freaking out.
When I say freaking out I mean beating herself in the head (no- not patting her head, but literally beating her head with her hands or fists) pulling out her hair- (she literally has a bald-ish spot on her right side because she does this when she is upset) and then biting her arm. She BIT HER OWN ARM FOR A MINUTE STRAIGHT- I was afraid she was going to break the skin!
All the while I am nicely asking her to stop- asking her what is wrong, trying to appease her with her favorite music- and praying to the Lord that she would stop. Stop because my heart is slowly breaking as I watch her physically hurt herself because she is upset.
She has few words. And none to express frustration. And her mind doesn't handle being upset like the average two year olds does.
ALL BECAUSE OF TS
Since her surgery I tend to say "She is doing SO well" when people ask how she is. Because truth be told she is! She is developing! She isn't seizing multiple times a day-heck she isn't seizing multiple times a week. She is walking around furniture, she is walking if you hold her hands- and while I think it will be a bit before she walks on her own- she is progressing!
WE ARE SO PROUD OF HER.
Sleep is still a challenge. Thankfully due to a stricter routine she is napping better- nights are still a crap shoot. Bedtime itself is much better- but rarely does the girl sleep through the night. A few times a month she blesses us by sleeping all night. And then a few times a month she blesses us by EXTRA quality time and stays up all night long.
Generally we feel like our lives are kinda normal. But then there are times when we notice she doesn't play with her peers the way she should. When we wonder how much she understands when we talk to her. When she hurts herself while I am driving and I am unable to intervene, that we realize we are still in a battle with Tuberous Sclerosis.
It didn't end with brain surgery.
Brain surgery wasn't curative medicine. It was palliative medicine.
(Palliative- to reduce the severity or symptoms of a disease)
There is no cure yet for TS.
Which is a harsh reality for me.
We are thankful for our sweet girl. For the unconditional love and wet kisses she has given to her sister. For her snuggles-I seriously watched her crawl onto the lap and snuggle another mom she has met twice today! She is a love bug.
But we know TS is still with our sweet girl. So while we say "She is doing really well" cause she is- we say that meaning- in the scope of having a disease without a cure "she is doing really well".
We have a long road to go. But it is a blessed road to walk with a sweet girl.
Our TS walk in in two weeks. Would you consider donating to help us move forward with research to find a CURE for this disease? A cure for Emmaus.
HERE is my fundraising page for the TS walk. I am way short of my goal- cause I kinda just had a baby and made my already crazy life a bit more CRAZY- so I slacked on the walk fundraising this year. Any donations would be GREATLY appreciated!
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