Mama Fran: daily update

Good Morning !!! Thank you Lord for waking up today!!
There is a special group of folks that are sometimes left in the shadows . The brothers and sisters of persons with SCA.
I remember when my oldest son Kevin was a little boy and the hospital we used at the time had a group for all the brothers and sisters of kids with cancer . He asked why there was not a group for him and his brother was really sick too.
Remember you are as important as your sibling try not to be frustrated if plans are cancelled for a crises or money is tight because your parents missed work due to your family members illness.
Once when my oldest was really little he asked if we would love him better when he got Sickle Cell
The whole family is affected when one member is down. Hang in their as a team.
That same little boy now all grown up realizes the tough journey his brother has he now takes care of his own family by working in a war zone daily in Afghanistan. His struggle as a child watching a sick brother and wondering sometime if he would die made him stronger.
There were time when he would try and make his brother "normal" like take to a party in the middle of winter his coat gets stolen and his brother was as cold as ice!
They look back on stuff like that and now know how dumb that was. But they also remember when my oldest found little tiny football pads to cover his brothers chest after his first Port a Cath at 3 yrs old . He wanted his brother to play outside .
The oldest remembers more bad stuff the youngest remembers how much fun they had at the children's hospital play room. We used a different hospital that included brothers and sisters all the time.
The youngest completed her graduate work researching the Social disparities of SCA and now is seeking a research position in the field of SCA.
She just rearranged her life to get planes home to help with this last critical episode.
Their work ethic is strong due to keeping the family going despite struggle.
They would walks the hospital floors with me finish their homework and go to school the next day.
There experiences while different has one similarity
What doesn't kill you makes you stronger .
Struggle can build character and give you drive to keep going.
Brothers and sisters you are very special
Be sure to talk about how you feel when your family member is sick .
Remind your family that watching the pain and suffering can be scary , sad and make you feel
Worried.
Ask how you can help. Ask for explanation learn about SCA and when the time comes you will be an advocate for your family member or dear friends. You may need to tell their story by sharing your own.
My grandson said " Grandma what's wrong with Uncle
Marqus "? When he was in the ICU. I explained that the sickle cells were blocking his blood vessels giving him pain. My grandson in a very strong matter of fact why says " Then they just need to get rid of those Sickle Cells"
Seeing things thru the eyes of babes is matter of fact , to the point.
The time is now !! And I believe we will be getting rid of these Sickle Cells!! Tell your stories
We love you brothers ,sisters , families , friends
Together you are the glue that keeps the person with SCA going !!!
Chronic illness can be lonely and the hospital staff can be your second family . It's ok to need help sometimes. Marqus always remembers to say thank you.
Dear Kevin and Ashley ,
Your dad and I love you and say thank you.