I had one of "those" mornings. I couldn't get out of my own way, I was running late, I realized that it had snowed another 4.5 inches last night and I had to shovel my way out of it...again. Chase would not put pants on. Then (with pants on) he threw the worst temper tantrum I have seen when I told him we had to get in the car and go to school. He ran away from me, through the snow, when I finally caught him he threw himself on the garage floor and kicked and screamed.
We made it to school and I rushed him out of the car into the building. As I signed him in I noticed a box on the table that read "Donations for Sandi Kennedy" and it caught my eye as I recognized the last name as one of Chase's classmates.
A little before Christmas, Chase was sent home with Skyler Kennedy's Christmas bag, instead of his own. When I got home one night, I eagerly opened the Christmas gift in which Chase made specially for me, but inside was an ornament, with 6 tiny finger snowmen, with little tiny hats, with little tiny names, Syler, her Mommy, her Daddy and her three brothers. And then a card, with a picture of a blonde, blue-eyed little 2 year old girl. After a moment of disappointment (I wanted to see what
my child had made me) I placed it back on the table and planned on returning it. And I did, a few days later. I received the correct Christmas bag and opened what Chase had made me, it was the same ornament, only his ornament had only two little finger snowman, one was Chase and the other Me...Mommy. And it made me sad...Skyler had 6...Chase had 2. This wasn't how it was supposed to be.
Christmas came and went and a couple weeks into January, I noticed in Skyler's cube that her little Christmas bag was still there. Then one day I saw her come into class and the teachers welcomed her back and gave her big hugs. My thoughts...she must have gone on vacation with her family, how lucky.
It wasn't until today that I put it all together. I saw the box, on the table looking for donations, then a letter on the door explaining the story and directing the reader to a "care page", and then I saw a story in the Seacoast Newspaper. Sandi, Skylers Mommy, that perfect little snowman Mommy of 4, is very very, very sick. And as this story unfolded in front of me, my tears started to flow, my heart ached, that pit in my stomach returned. This perfect little snowman family is hurting, they are losing their Mommy, a husband is losing his wife. That perfect little ornament, with 6 perfect little snowmen people, the ornament that I held in the palm of my hand and felt a pang of jealousy...hers had 6, mine had 2, they are going through what no family should ever have to go through, an illness, no cure, no answers...
My drive to work was sad. I cried, I looked up at the sky, I talked to Alec. And as I did, I saw the most beautiful little rainbow, it was Alec, consoling me, giving me a sign that this is life, that people hurt, people die, even people who have 4 little kids, but that it will all be OK, even for them, because God will carry them, he will give them strength, he will lift them up.
The silly start to my day, those little things that I got aggravated by, it all slipped away, how could I possibly let those things get me down? I have a beautiful life, I have so many blessings. Chase was extra loving tonight, he wanted to hug and kiss and "cuggle" me, it was as if he knew, that something was not right.
My heart is heavy. I know the pain the family is going through, I know how much it hurts. I know that Sandi's own heart is breaking, for she may be leaving her children, Alec felt that way too. I wish I could hug them all and tell them it is going to be OK. I am sorry that I felt envy when I held that ornament, I am reminded that everyone has a story, that I should never wish for someone else's life, I am reminded that every day is a gift.
I pray for this family...this little snowman family of 6. I pray that God wraps them in his love, that he shines his light on them, that he heals their aching hearts, that he gives them Hope, that he shows them Love, that they have Faith in him.
I have attached her page, for donations (the last update was that Sandi was home surrounded by her family and hospice was there). And the story from the Seacoast Newspaper. Please, if you can, donate, and please pray for this family. They need it. I know. And as they say, never, ever, ever lose Hope...Miracles happen every day.
Click here for the donations page:
Hope for Sandi | Medical Expenses - YouCaring.com
Sandi Tucker Kennedy with children, Tucker, 9, twins Asher and Gunner, 5, and Skyler, 2.
Sandi Tucker Kennedy with husband Jake
Family hopes for miracle after young mom struck by disease
By Jennifer Feals
February 05, 2014 - 1:07 PM
KENNEBUNK — A Kennebunk family and friends are hoping for a miracle.
After months of debilitating symptoms with no diagnosis, doctors this week say Sandi Tucker Kennedy, a 38-year-old wife and mom of four young children ages 2 to 9, is believed to have a prion disease, a family of rare progressive neurodegenerative disorders that take over the neurological system.
“She's actually very young for it,” said Kennedy's sister-in-law, Denise Tucker. “It's causing all the neurological issues she's having. Her vision has gone from double vision to very blurry, she's tremoring, she can be cognizant but she has a very hard time getting things out, she needs help walking everywhere. There is no treatment for this. Basically, they manage the symptoms and this is always fatal. This is what we found out yesterday.”
Tucker said she's never known anyone who lived life as fully as Kennedy, a nurse at Maine Medical Center. She described her as an active, vibrant woman and mother who included her children in that lifestyle, once bringing her oldest son along on a journey where she shot a moose.
“I've never met anybody in my life who lived life every day to the fullest like Sandi did. She brought her kids with her everywhere, she made sure they experienced life every minute,” Tucker said. “She worked nights just so she could be home days with her kids. She is the most caring mom and wife I have ever met in my life. She's amazing.”
But Kennedy's health took a turn this past November, when she began experiencing symptoms of a cough and vertigo. By Christmas Eve, Kennedy was admitted to the hospital with symptoms consistent with having a stroke, but doctors found no evidence of that. By mid-January, her health worsened and she was brought back to the hospital with slurred speech, a loss of motor skills, deteriorating vision and memory loss. She was unable to walk.
After a plethora of tests from MRIs to blood tests to spinal taps, doctors thought Kennedy might have a rare form of cancer, but they could not locate any cancer in her body. Though still with no diagnosis, Kennedy was sent home at the end of January and was able to walk again.
Just days later, her health worsened and Kennedy's husband Jake drove her to Brigham & Women's Hospital in Boston, where doctors learned she had encephalitis, or swelling of the brain. She has been put on steroids since this past weekend in an attempt to reduce the swelling, but the swelling is not going down, Tucker said.
Finally, on Tuesday of this week, doctors at the Massachusetts hospital said they believe Kennedy could have Prion Disease, but there are no official tests that can definitively point to the disease and there is also no known cure, Tucker said.
“The neurological condition is going to continue. It's a rapid-moving disease,” Tucker said. “The prognosis is four to 12 months from the onset of symptoms and she's had symptoms for four months now.”
With Kennedy's back-and-forth hospitalization over the past months, Tucker said she and her husband, who is a builder, have suffered a loss of wages and will also incur a great deal of medical costs as their insurance will only cover a portion of the medical expenses.
Friends and family members have created a page on YouCaring.com to support the Kennedy family. Visit youcaring.com and search for “Hope for Sandi.” Tucker said 100 percent of any money raised through the page will during benefit the Kennedys.
An organized way for community members to support the family by cooking food and more is also in the works, Tucker said.
Kennebunk resident Sarah Nunan, who said she has known Kennedy since 2007, said their kids have grown up together and it's hard “to put into words” the kind of friend Kennedy is.
“She is the strongest person I know, greatest mother, wife and daughter. She always has a smile on her face and laughter in her voice, and it is contagious,” Nunan said. “She has been there every day for me. She is one of my greatest rocks. Now is my time to be the rock to her kids, husband and her wonderful family. I love them with all my heart and always will.”
A therapist by trade, Tucker said, “I don't have the coping skills for myself on this.”
“We're just trying to figure out the next step and we appreciate everyone's support. We're very overwhelmed right now. As we get more details, we'll let everyone know,” Tucker said. “Keep praying. We're looking for a miracle.”
