We gathered one week ago today at the cemetery to release balloons and remember Amy. It was dreary, cloudy and misting a little. Even with the heavy clouds the balloons still went up to the heavens. We watched until we could see them no more. Tessa was already having some contractions but she was there at the cemetery to honor her sister. Her labor was long and progressed slowly. On Friday after 42 hours of labor little Marissa Amy was born.
I have, of course, had my thoughts on Tessa quite a lot this past month. We had her baby shower the end of February and she told me later that she wanted to honor Amy and tell everyone that she had always felt like a mother but the tears were already spilling over and she didn't want to make it worse for me or her. I, too, have always felt like Tessa was a second mother to Amy, but something happened last month that made me think a lot more about what it must have been like to grow up with Amy as her big sister.
My daughters, a friend and I had a special outing to the new movie "Cinderella". It was a movie we wanted to see as soon as we saw an advertisement for it and saw that Cinderella had a glass butterfly on each of her glass slippers. We wanted to go together to remember Amy. She would have loved the movie. But that night I tried not to think of that. I just was enjoying the story and not wanting to cry. As Cinderella was being transformed into the beautiful princess by her fairy godmother, Tessa started crying and whispered to me, "I wonder if that is how Amy felt going to heaven." It did bring tears to my eyes that she was so moved by the scene, but I didn't feel the same and was confused by her feelings. We talked about it later and she said that she thought Amy would have felt beautiful just like Cinderella did. I am beginning to realize that I haven't thought enough as to how Amy affected Tessa as they were growing up. As Amy's mom I always thought she was beautiful. She was my baby and I took care of her and loved her. As she grew up I became her voice before the school board, the board president, and two different school superintendents and principals through the years. I was mom, and did what any mom would do. I put Tessa in this category also as she was her "second" mom. She was only two years older than Amy but took care of her just as good as I did once she was old enough to do so. I never gave much thought to how she felt having a special needs sister. Amy was a part of our family and we included her in everything we did and made adjustments so she could be included. I always tried to dress her nicely, keep the drool wiped up and keep her smelling nice. I have realized that I don't notice other people when we are in public and I don't make eye contact because over the years I didn't want to see if people were staring at us or not. My two youngest volunteered in Amy's classroom for a couple of years once a week, playing with the other special needs kids. Amy was just their big sister even though she couldn't do things they could do. Emily is almost 5 years younger and James 7 years younger than Amy.
But Tessa was always there. From the beginning of her life Amy always had a big sister. Does Tessa remember as a 4 year old when Amy started screaming and screaming and nothing could be done to comfort her? Does she remember all the doctor visits to find out what was wrong with her little sister? Does she remember being told that Amy was going to die because that is what the doctors told us? Does she remember when we finally found out that she had Rett Syndrome and the doctor said we were not given a death sentence but a life sentence of care for Amy? What are her memories from her earliest years with Amy?
Tessa tends to hold her feelings in and I am just realizing the pain that she must have felt knowing that her sister couldn't do the things that she could do. Putting herself in Amy's place, I guess she might have felt left out and not very pretty. She might even have felt like the "cinder" of Cinderella. Never getting to play like a normal sister, not getting to dress up and go to "the ball" to meet the prince.
I remember when Tessa went to college and she had to tell Amy goodbye. Amy blinked and blinked, trying to tell her sister that she loved her. I think now, that it must have been just as hard on Tessa to tell her sister goodbye as it was on Amy. Tessa was going on an exciting adventure, to live away from home and learn new things and meet new people. Amy had to stay at home, not just as a little sister, but forever. I was okay with that, but was Tessa?
As time passed, Tessa moved back home, moved to an apartment and then met her husband. Her life moved on, Amy's stayed the same. But Amy's life was enriched by the people Tessa met and the constant love of Tessa and her presence in her life. She took Amy so many places and made her life full. Amy's last few years were spent surrounded by all the people who loved her the most.
Now Tessa has her own little girl. Who knows what the future holds for this wee little one. She has already had to stay in the hospital for a week due to a fever at birth while Tessa was released after 2 days. But Tessa said Amy's hospital stay has prepared her for this. It is only one more full day and she will get to bring home her precious daughter on Friday. One thing I do know. Marissa Amy is already loved more than any little girl could possibly be loved.
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| Marissa one day old with Mom and Dad |
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| Two days old. |
I also know that God holds the future.
I am reminded of an old song by the Gaithers,
"Because He Lives"
God sent His son, they called Him, Jesus;
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives!
Chorus
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
How sweet to hold a newborn baby,
And feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because He Lives!
Chorus
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
And then one day, I'll cross the river,
I'll fight life's final war with pain;
And then, as death gives way to victory,
I'll see the lights of glory and I'll know He lives!
Chorus
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives!
Chorus
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
How sweet to hold a newborn baby,
And feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because He Lives!
Chorus
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
And then one day, I'll cross the river,
I'll fight life's final war with pain;
And then, as death gives way to victory,
I'll see the lights of glory and I'll know He lives!
Chorus
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
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