My Childhood

My Childhood ( from Kelli's perspective)

I’ve been doing a lot of thinking since I spoke with my sister Ashley last night.  And while I have known that mom and dad need more help, I guess it really sank in for the first time last night.  I feel so helpless being an hour away and not being able to pick up and just go when they need help.  Countless people have asked me how my mom is doing over the last few months.  And my response has always been, “I don’t know how she’s still standing.”  This blog is designed to document our family’s journey through LBD.  But, I’m going to back up many years and tell you about my mom and how she got to where she is today, living with my dad and LBD.

My mom is a rock of strength, just like my dad.  At 30 years of age she was diagnosed with Systemic Lupus Erythematosus, AKA Lupus.  I was 7 years old, Ashley was 3 years old and Alex had just been born.  Needless to say, our world as children was rocked to its core.  I can remember my mom spending more time in a hospital than she was able to spend at home.  And I can remember that when she was able to be home, she was mostly sleeping.  Lupus was not that commonly known in 1980, and it took a while for the doctors to get the correct diagnosis for her.

Because she was so sick, I became a surrogate mother to Ashley and Alex.  Our dad worked 12-14 hour days to provide for us.  I can remember him driving through the Burger King or McDonald’s drive thru to pick up dinner on his way home.  He would drop off dinner, and then someone would come and sit with us while he went back to work until late in the night.  Eventually, I became old enough to handle the responsibility of watching Ashley and Alex by myself.  To be honest with you, I hated that responsibility.  I wanted to be out playing with my friends, not babysitting my siblings.  I can remember getting so frustrated that I just locked myself in the bathroom one day because I couldn’t handle it anymore.

Recently, Jeff and I were helping mom clean out some rooms in their house.  I came across some letters she had saved that I wrote her when she was in the hospital one time.  Reading these letters brought back so many good, yet really sad, memories:

Mom, Hi!  What’s up?  Did you here?  I had to get up in front of the whole school today and say my poem.  I got half way through and forgot it.  It was very embarrassing.  But I finally remembered it.  When do you get to come home?  I was very upset when I found out that you couldn’t come home today.  Ashley said she was going to beat up Dr. Balch.  Tell him I said to let you come home.  This has been better because we get to stay with Dad the whole time.  This is the longest letter I have ever written - I hope it’s not boring.  I’m sure it can get pretty boring up there.  I started reading your Lupus book last night.  It was kind of interesting.  Everyone has been asking about you lately.

I wrote that letter in 1986, when I was just 13 years old.  And it breaks my heart to read it today, knowing that all of us really had to grow up without our mom being there fully, through absolutely no fault of her own.  I can remember when my brother went through the roughest time in his life in 2006, we were all sitting in a room together and he said “I want my mom to be my mom and I want my sister to be my sister.”

This journey through LBD, while even in its earliest stages, has already taken a great toll on my mom.  My dad has always been her caregiver, and now those roles have been reversed.  I often ask myself how can God be so cruel.  And then I bring myself back to reality and I tell myself God isn’t cruel.  He has a plan.  And in my family’s darkest hour of need, I know that the Thomaston community is going to rally around my parents to help carry their burdens for them.  Because honestly, they are not strong enough to carry them by themselves anymore.