...there were never such devoted sisters...
My sister, Shamayn, and her family came for a visit last week. When they left it's like they took all of the life and energy in the house with them. Now it's very quiet and morgue-like around here.
I can't remember if I've written about my sister before. I know I've referenced her many times but I can't remember if I've talked about her family and what her life is like from day to day. It's a challenge, the kind that could break most of us.
Shamayn is 3-1/2 years younger than me and we hated each other for the first 30 years of my life. She was not well when she was born so she required a lot of time and attention that I was used to having all to myself. This did not sit well with my preschool self. She was a big thorn in my side for many years.
We also have completely opposite personalities. I've always been more reserved and quiet with a dry sense of humor. Mayn is outgoing, funny and very animated. I keep my feelings to myself but Mayn feels every emotion so deeply that you can see them from the outside.
It took a major family crisis to bring us together but now she is my best friend and she's one of the best moms that I know. Shamayn's husband Mike had to have heart valve replacement surgery when he was in his mid 30s. Following that surgery he had a series of strokes that disabled him for life. He is able to function physically as far as helping with the kids and running errands, but the strokes affected him mentally to the point where he is unable to hold a job. You can imagine how difficult it would be for a man that young to suddenly be unable to provide for his family. He has somehow managed to adjust to his new role with grace that is not of this earth.
Shamayn's oldest child Kaelei is 14 and was born with a genetic disease called mitochondrial myopathy. It's a form of muscular dystrophy that not only affects the muscles in her limbs but also various organs and body systems. Kaelei has to remain very sedentary at home and when she leaves the house she has to use a wheelchair or she will collapse after just a few steps. She has to watch the sugar content of the foods she eats but she is able to eat on her own most of the time. However, she has been hooked up to a feeding tube all of her life to maintain a constant flow of nutrients into her body. Otherwise, her blood sugar can drop to 11 without any notice at all and she would be in a coma. Fortunately she is able to monitor her own blood sugar now and she recognizes when she's not feeling well so she can inject Polycose into her g-button before her sugar drops too drastically.
Kaelei has recently been having problems with her pancreas and gall bladder which requires very frequent trips to her doctors in Dallas to figure out a treatment plan...which is almost always a guessing game. Kaelei is one of the most compassionate teenagers I've ever met. She wants so desperately to get her drivers license in a couple of years but realistically she will probably never be able to drive. Kaelei has such big dreams and it makes Shamayn physically ill to know that her sweet daughter will have to experience some disappointment when the reality of her condition crushes her dreams.
Shamayn has a disabled husband and daughter but she also has a 4 year old son as well. Presley has a sensory processing disorder and is mildly autistic. He is super smart and can figure out how to work any electronic device you hand him. However, when he gets tired of the device he will throw it against the nearest wall just to watch it crumble into a million pieces. He has almost no impulse control right now and he is in constant motion all day long. He can't be left unsupervised for even a second or he'll find trouble to get into. He's an exhausting little toot!
Presley also has some trouble with his digestive tract and most likely has a mitochondrial disease like Kaelei. The test for the disease is a deep tissue muscle biopsy which requires major surgery. Understandably Shamayn has been reluctant to put Presley through that since he's already had more surgeries than most other 4 year olds. Besides, even if the diagnosis is positive there's no cure. Shamayn is already very familiar with the treatments available so she knows what to do for him.
My sister has a disabled husband and 2 disabled children. She is a nurse but is unable to work because if she did she would have to hire a nurse to sit with the kids while she worked. That would pretty much zero out whatever income she made and it might cause them to lose some of their disability benefits as well. The kids have to have those benefits because of the constant medical bills, therapies, and specialized devices they need. Shamayn also battles severe Crohn's disease and frequently has other weird autoimmune problems that pop up out of the blue.
Put yourself in Shamayn's shoes and imagine being the primary caregiver for your disabled husband and two disabled children where one of those children wasn't expected to live past 6 years old and could be called home to Jesus at any moment plus you yourself are not well. Now imagine having to care for them on a fixed income of approximately $16,000 per year. Any time I start to feel sorry for myself I think about Mayn and her life and the supernatural strength she must have just to get from one day to the next. There are families in much worse situations than hers but seeing how Mayn struggles from day to day is all of the reality check I can handle.
Does Shamayn sit around all day feeling sorry for herself and wondering why she's forced to play this hand she was dealt? Hardly. She does have her moments when her life catches up with her and she has a little temporary breakdown. But most of the time she just does what she has to do and makes the best use of the few resources at hand to take care of her family. Obviously finances, or lack thereof, are a huge burden for the Kennedy family but when your children are battling life-threatening diseases for which there is no cure, you just do what you have to do and pray that God will provide.
Shamayn is heavy on my mind right now because she is going through one of those rare times when she gets overwhelmed by her life. She's feeling helpless, hopeless, exhausted and defeated. In her shoes I would probably feel that way all the time but this is not her normal mode.
Mayn is the funniest person I know and I love it when she laughs! She laughs with her whole body and you just can't help but laugh with her when she gets tickled! She's beautiful, smart and creative, she's compassionate and a tireless advocate for causes she believes in. She's generous, loving, affectionate and can burp the Star Spangled Banner. I admire that in a gal. She's an amazing mother, an incredible wife (her husband says so), the best sister a girl could ever have. She's my best friend and right now she's hurting so that means I'm hurting too.
I love my sister more than I can even express to her. That thorn in my side ended up being one of the best things that ever happened to me and I'm SO thankful I didn't make good on my childhood plans to sell her to the gypsies.