Katelyn Corrine, entered my life on a Sunday afternoon in on July 19th, 1991. I was 16 years old. she was a perfect baby from birth.. She walked at 10 months talked at full sentences at 1 year. and oh how independent she was.. I do I do mommy… i think those were her most often said words.. She was a happy baby and child always looking out for her little brother and always hugging everyone..
Her biological father was out of her life at 2 year old.. and I divorced him a year later… I raised both Katelyn and Mikey on my own ( with help from family and friends) until I met Mike. Katelyn asked me how soon she could marry Big Mike. (kate was 5)
We all laughed and told Kate not for a while..
I married Big mike on Sept 25 1999. Kate and Mikey were so happy…
Life went on and in 2005 we welcomed Landon with open arms… Kate was so excited that we having a baby she jumped up and down and screamed!! 🙂 i think she was more excited than most.. We has two more little boys Shawn in 2006 and GabRayel in 2007.
Kate was present at Shawn’s birth and Gabe’s… She says she wanted a little girl with them both but the moment they were born she loved them.. She was a out spoken girl, she often could be found talking on the phone or hanging out with her friends on our porch. She was
leader and was always looking out for the underdog, and way always worried about people.
My sister noticed that Katelyn a developed a lisp.. i hadn’t even noticed.. I had noticed her Grades slipping from straight a’s to c and f…. We met with teachers and they said she want trying… I will most likely never forgive myself for looking at Kate in that meeting and saying “you are smart, you can do this, why are u not doing it.” I remember her say “mom, i just can’t get it it, i try but i can’t get it.” She was 15.
Kate’s brother Mikey was tested for hd at 16 years of age due to some of his behaviors, his test came back negative. He did not have the gene. Kate asked to be tested on her 18th birthday… I call Iowa city and we got it all set up.. 3 weeks later we were in Des Monies Iowa, Kate Mikey and I, as the genetics read us the results.. “Katelyn, I am sorry but your test showed your CAG count is at 58″… I remember looking at Mikey at Kate and hearing a buzzing in my ears, and my face got hot
I know many other have a higher cag count… but it was high enough…
that was almost 3 years ago… Kate forgets things.. she get mad at her little brothers so easily.. she has become singled minded .. but through this all her and Landon fight JHD… She sometimes gets sad but most of the time she lives.. she laughs and smuggles and she lives…
She says she is Katelyn who happens to have JHD… not kate with jhd..
She fights for her independence… She says she is living with JHD …. not dying with JHD…
We all know how this story will end.. sad and cruel..
But yet we still pray for strengths and love and a cure.. We fight for our children or grandchildren and those who lives have touched ours… I can’t say i understand or are even at peace with Kate’s JHD. I have however found people who’s lives have giving me hope and strength and love..
Kate will be 20 next week, and We will celebrate.. with cake and ice cream and all bbq fixings! and when I go to bed i will thank God for all blessings… even when it seems they are not blessings at all….
she also has a daughter named Nevaeh, she’s bigger then Katelyn, whos at risk for jhd and hd.. she’s going to watch her Mommy get sicker. It’s really heartbreaking. Love withstands all. Thanks for reading about Katelyn… She is my one and only baby girl..(she will get mad when she see i put this 🙂 ) I love you Katelyn Corrine! Kate Loves to Read her mastiff dog Bean, Tortoises, the 60s, Flowers, Bright Colors, Bell Bottom Jeans and Peace
Here’s Katelyn’s Bucket List..
Go To The Beach With Her Brothers
Raise More Money For A Cure For HD and JHD
Kate is living life to the fullest. She believes in family, God, and hope. She believes in living in the day and refuses to be held down by this disease.Please email her Mom! They also take medical donations!
So as each day dawns we gather ourselves to fight. Fight for Her and her daughter. HOWEVER it is a losing battle. These pictures are of her 2 days after she fell when I was standing next to her. We feed her now Because the tremors are so bad that she can't feed her self. We help her dress, brush her teeth and comb her hair., She chokes when she eats... And every day is scary... Let me ask you something... How much strength will it take to admit that we are unable to care for her? ..... I don't know Because I haven't reached that point. Can tell you how she gets mad when we she hears the words no or in one second... I can tell you how exhausting it is to feed her and then try to feed ourselves. I can go on and on about the shitty horrible scary and even gross parts of this Damn disease. But I won't Because we can't dwell on that place. It's too much.. So deal with the day to day living. We deal with insurance companies, waivers that limit the help we can receive Because they say she is not disabled "enough." We deal with spilled milk or iced coffee... We deal changing bed sheets and clothes and we pray for courage, and substances for our hearts and souls. And when we take a moment to ourselves to regroup... Well, we feel guilty. Because how dare we take those moments for ourselves. We say no thank you or we will see to our friends and family Because it's not easy to load her and everyone up to go anywhere. And sometimes we hide in our home Because we are tired and can't be good hosts. We know people who will help who are willing and able to help, but we believe in helping others.... And we are less and less able to to return the favor when people help us. We also know that caring for Kate is not as simple as it was 2 months ago or even 3 weeks ago. And we know it's not easy. So how can We ask others to deal with our struggles? We miss out out on family reunions.. We miss out on our whole family watching Landon play ball. We hear people ask where is mom or where is dad, why couldn't you all come?? Yet, We survive and live in our little world Because we know our world will be forever changed when God calls her home. Because it's not easy to sit with her out on the hot days, it's not easy for her to try to eat in front of others ... Its not what She feels like sharing an about her self. She sleeps in the late afternoons so waking her up is not an option We live and are we are thankful for our lives and for her. We are private people and for me to even write this hard and painful. We have family that will not come to see us Because we don't go to see them.It is not Because we don't want to but Because we are struggling. We can't just drop everything switch plans... It is not a option for us. Not for Kate or Shawn..There are great days and there are shitty horrible days. And there are somewhat ok days. So when people say oh just come over its not as simple as that. We sometimes just don't have the energy or ability to be what is needed from others, Because We have expened so much of it on our family. It is not a easy thing to grasp... In fact I pray that no one ever understands.. Because if you truly understand than your going through a living tragedy. And I do not wish that on anyone. Let me tell you something...we are exhausted at the end of most days. So much so that there are days I have fallen asleep with my shoes on. There are days when I can't even think straight. And we live with the fear of what tommrrow may bring... We know that someday sooner than later Neaveh will have to leave us to live with her Daddy. And while we would love to be a Nana and Papa and uncles we fear this becasue not seeing Neaveh would kill Kate... Not seeing Our Super Perfectly PERFECT princess Neaveh would kill a very vital part of our family. So,when people ask why don't you put Kate in a home I say becasue we want her to live.... Not die, Becasue a "home " is not where she belongs.We know our house is not set up for her, we know that We need changes in order to keep her with us. But we also know that her needs change daily... Even hourly. So we take what we have and we work to the best of our abilities and capabilities with it. We don't ask for judgement or for approval..in fact We ask for prayers and compassion. We have so many many blessings..we have faith... And we have one another and we have hope and we have prayers. My prayers have changed over the years... Prayers for strength for my boys to find peace when Kate leaves us.Prayers that Neaveh's Daddy will always allow us to be a big part of her life, prayers that Kate is not suffering and that she can find peace when this times comes. My prayers are that our family can survive this Damn disease and the aftershocks it creates. Are we strong?? Hell Yeah We Are.. We are stronger Because we have learned to be.. Because Kate is strong. Are we perfect, without fear Or anxiety, or anger? HELL NO... We are human after all.. But we are unable And unwilling to STOP FIGHTING for her and for us... For our family that is pretty messed up at times.. And pretty amazing at times... But mostly... We are just a family trying to deal with a shitty disease that is stealing our Daughter, their Sister and her Mommy away from for us and herself.
There was a night after Kate was diagnosed that her “little” brother Mikey came to me with tears running and his voice was tiny as he asked…
Mom why… She and me,were supposed to sit and watch our grandchildren play ..we were supposed to put you and dad in a nursing home that wouldn’t change your diapers (it was a long running joke) … Mom she is suppose to be with me…She is my big sister… Why mom why does she have to have JHD. Why??
I need her …
I had no answers for him then… And I still have no answers for him or her 3 other little brothers…
Landon who was so brave and strong for her… Who was so sure he would find a cure/treatment… And now stuggles with his fears and anger with losing her, he asks for his family back.. The family we had when Kate was 18 when he stayed the night with her And they would laugh and watch movies.
Shawn who even with his stuggles he is the frist one to,always help her, he understands her slured speak and never tell her no, he makes her drinks or helps her to eat…
And,Gabe who tries to help her eat..
I don’t have answers for them… But we tell them that we are togather and we love each other. That we are stronger as family then we are alone.
This song reminded me of these moments.. The moments that “The Boys” and Kate will not experience..
I know Mikey will tell his children about his big sister and who she was, the laughter and trouble they got into.
I know Landon will hold,in his heart the times he spent with his “Sissy” at the apartment before she,had to move back home. He will find peace in sharing and laughing about those times
I know Shawn will become stronger and braver, and more compassionate Becasue of his actions with his sister.
Gabe will find self-confidence to grow and develop Becasue he can help an adult.
For me I find that my heart breaks when I think of the Boys .. They all have different relationships with thier one And only sister. They are braver then me…