It’s been a little over a year since I found out that my baby boy is rapidly aging.
This disease called Cockayne Syndrome is the worst thing I’ve ever seen.
A fellow CS mother posted the question on FB recently, “Why would such a thing exist?”
And I echo her: WHY???
A counselor has encouraged me to journal my feelings to help sort through some of the tougher emotions, but I’ve never liked journaling.
I can draw my feelings but finding words is difficult.
It seems like my heart is just as heavy now as it was when Knox was diagnosed.
Perhaps a friend of mine was right when she said we grieve ahead when we’re faced with this type of tragedy.
It’s a helpless and frustrating feeling.
I must watch Knox suffer just as the other children with CS suffer.
I’ve seen a death come unexpectedly.
My father died tragically at age 34.
And I’ve seen a death come slowly.
My mother died after a particularly cruel battle with cancer at age 50.
But I’ve never seen a death coming so early.
If Knox follows the path of other children with CS2, he’ll go to heaven around 4-7 yrs.
He’ll be buried beside his grandmother in a plot that was originally purchased for me.
The only words that come to me are these:
***I Love You, Knox***
Knox will be turning 2 years old in just a few days so I’ll be posting some special birthday photos of him.
I’ll also be posting some gorgeous glass mosaic butterflies soon that a talented artist friend of mine donated to Knox’s Etsy shop.
And those are happier thoughts to end on.
I don’t have words either. I wish I could draw the pain that washes over me as I read each sentance and understand the suffering with each death and Knox’s illness. love you, Nola
Scarlett, you have displayed more strength and grace in coping, at such a young age, with this tragic turn in your life through your beautiful illustrations on paper, as well as your precious writings. They clearly reveal your broken heart, as well as your deep love of your beautiful little boy, Knox. I pray peace and comfort for you in knowing Knox will be safe in the arms of Jesus and in the company of many who love you and him. Continue to enjoy and treasure every minute you have with him and hold on to every sweet memory you make with him. The memories are like golden treasures that will last forever and no one can take them from you.
Just a Pinterest Friend, who cares and keeps you and your family in my prayers, Love in Christ, Laura
My sweet Scarlett, your drawings say more than words ever could. Thank you for sharing with us so that we can in some small way understand and try to love you better. I love you dearly . I can’t wait for the joy the birthday party. Our sweet Knox is going to love it.
Hi Scarlett..what a heart-touching post ..your art is emotional and powerful and your words deeply stirring. Hugs to you and your loved ones and all who love and care for your sweet little one.
Whatever happens in your journey..you are so blessed to have one another…such a special soul and beautiful spirit he is!
Victoria
It makes me cry how much I miss your Mom every day. I woke up this morning thinking about how many of my friends are gone to stupid cancer. How my husband is gone too early like your Dad. How lonely it is sometimes. Get all the hugs you can while you can. These memories are so precious and all we have left of the ones who made such a difference in our lives.
Il tuo dolore è arrivato anche in Italia e soffro insieme a te ed al tuo piccolo.
Un grande abbraccio, Scarlett cara
Maria
I can’t grasp how you live with this every day watching him suffer,I pray that you can live only one day at a time and take what you are given for each day! I am so thankful for the hope that we have in our Lord and Savior that this world is not our home we are just passing through!
Scarlet, I have been so taken with your ability to share pieces of your life both in words and with your art. I don’t know if it is an act of bravery from you but it feels brave to me. I see from the comments that others feel the love, warmth and caring from you too. I hope you draw strength from sharing with us..
I love you, Mom.
I’m not sure what touches me more, Scarlett – your art, your well-lived life, or the fruit that’s so obvious in Maddie and the other children. It’s all of it – you inspire me to live a much better life. I pray that God continues to carry you.
Love, Brenda
Oh, LOVE! I’m so sorry. I think of you all the time and wonder too WHY.
LOVE to you and your family!!!
I came over to tell you that I saw your photo in the latest art journaling (an ad). Beautiful shot that I assume will be in Artful Blogging. I can’t wait to see you there!! xoxoxox
I Love you all very much words cannot express my sorrow and grief for you and your beautiful family and I also miss both your Mom and Dad everyday. I just know god must have something awesome in store for you
I Love You Very Much!!!!
Holly
Your drawings truly express your feelings and I am glad you have your art to do so. I journal and actually started journaling when I first found out I was expecting Grace. Never journaled before so strange I started with her. I just wanted Grace to have something to read about her life. Little did I know these journals would help me and will be my precious memories to read one day. I wish there were answers or words of encouragement but like you, I take one day at a time and make as many memories as possible ! Love you girl and we will get through this…one day at a time! Hugs to you!
There are no words, for this situation! I can see why you can’t journal with words. Your photos say volumes about your situation! It makes me sad, I don’t understand why any child should have to go through this! Keep drawing and expressing your feelings! Celebrate your beautiful, precious boy each day~
Your parents would of loved him and someday they will comfort n’ embrace him! (((hugs)))
Our hearts and prayers are with you Scarlett. ~s
Scarlett,
There are no words for this … only love for Knox and love of yourself.
Each soul is sent for a reason. Because of your love for Knox, he has reached so many of us. He has purpose and gives love and joy.
God bless you all.
Love,
Karen
@Karen –Thank you <3
Scarlett your drawings make my heart so heavy and my eyes sting…please take one day at a time and know that as you share Knox’s story it is changing lives. It is touching each and every one of us so deeply. ((hugs))
Scarlett, This is one of the mysteries of God that we will have to ask when we meet Him face to face. My heavy heart is only eased knowing that we all will be together in the end with bodies that are glorified by our Lord. Thank you for sharing your heart as our family continues to pray for yours.
Dear Scarlett – life is tough isn’t it .. yet beautiful in a funny way … but to lose both your parents so young and now with Knox and his CS … your family are very supportive, and the group is around and near you … it seems we always need to count our blessings along with dealing with major adversity … out of the darkness springs light eternal … be blessed as you are – with so many thoughts and hugs … Hilary