Home / Blog / DIPG / One Month

One Month

One month down.  Honestly, it has been a blur.  It’s like time stood still and was on fast forward at the same time.  I think I floated through the first week, then reality slowly started to sink in.  I can’t even explain the pain of not having Dylan physically present with us.  Jeff, Mason, and I all seem to be on our own emotional roller coasters.  One day we’re doing ok, the next, we could be down in a hole.  There seems to be no rhyme or reason.  I slept with Dylan almost every night since she was diagnosed, so the nights are especially difficult.  I’ve had several nights where I’ve woken up in a panic, trying to save her.  We miss her so much.  

Casey, Jeff, and Mason looking at Dylan and all smiling

At the same time, there is relief.  I don’t miss the cancer.  I don’t miss doctor appointments, MRIs, emesis bags, PICC dressing changes, endless pills.  I am glad Dylan is free from that.  

Jeff, Mason, and I are slowly discovering a new normal.  It feels empty and quiet, but we are finding our way.  We continue to work with a great counselor and still believe you have to fight to choose joy in life.  I’m thankful for the understanding Jeff and I have with each other.  When one of us is down, the other one will bear the burden of life.  We deal with grief very differently.  Jeff throws himself into work, while I often find myself paralyzed.  I’m trying to be gentle with myself and honor what I need each day.  I need a lot of time alone to process and think.  We both weep when we hear of other DIPG kids getting diagnosed or coming to the end of their journey.  We will continue to fight on behalf of Dylan and all DIPG children.  (The foundation is established – we are still waiting for Facebook to approve us as a nonprofit.)

mason and dylan in dune grass

If you see us out and about, we ask that you treat us normally.  Don’t be afraid to talk to us.  Don’t be afraid to talk about Dylan either.  And please don’t be afraid if we ever cry.  I always appreciate hearing your Dylan memories and stories.  We continue to thank you for all the love and support you gave Dylan and us.  We have felt the love from near and far.  We know Dylan is still with us, free from her broken body.  

Because it looks like we will not be able to gather in large groups anytime soon, we are working on a virtual memorial.  Eventually, we have many ideas to honor her, including a bench on the Discovery Trail.  

  • Jeff and Dylan smiling
  • Casey holds Dylan while Dylan plays with her necklace

An Ugly Pair of Shoes

Author Unkown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.
I get funny looks wearing these shoes. They are looks of sympathy.
I can tell in others’ eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes, I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am. I will forever walk in the shoes of a woman who has lost a child.

Pin1
Share1K
1K Shares

50 thoughts on “One Month”

  1. You and your family will forever be in my prayers. I know the pain of losing a child and a husband. There is no taking off those “shoes” there is only learning to walk in them.

  4. Thank you so much Casey for these contnued updates on your family. I also remembered today was a month. I guess it’s because she passed on the 9th of April which is unicorn day. The bench should go in front of your trail
    Love to you all

  5. What a great way of writing about losing a child. I had never seen the ugly shoe story but boy does it say it all. Dylan made all of us realize that no one is guaranteed a future. She will always be a part of your lives.

  7. Thank you for sharing your journey with us all, I know how difficult that must be! We love you all and are praying and thinking of you everyday ❤ I love the poem of the broken shoes and will share it with my mother in law. Happy Mother’s day!

  8. Thank you so much for sharing this Casey. Hugs to you and your family.

  10. Thank you for continuing to share your grief and joy as you try to find the “new normal”. We continue to hold you all close to our hearts. May you enjoy a beautiful day with Mason tomorrow and in knowing that Dylan had the very best mother ever!
    ❤️

  11. Thank you for sharing this and all of your story. Knowing how others travel a difficult path makes it easier when other find themselves on one of those pathways. Wishing you strength and peace in your journey.

  12. So eloquent. Thank you for sharing your journey with us. Love you. ❤️

  13. Hello.
    Such powerful words written through pain.
    ”Ugly Shoes” is beautiful, thank you for sharing and sharing you!
    Kindly,
    Liz💫

  14. I think of you and your family all the time. My prayers to you all. I love your pictures you shared. Big hugs.

  15. This is so much of everything. Thank you for sharing this journey with us, though it should haven’t to be this way. Sharing hurt and struggle is so hard, but it paves the way and shows one example of what this all actually looks like. I am thankful you have a good understanding with Jeff and you both respect the ways of grieving. I’m so glad you all have support. Big hugs, Casey.
    PS: I found my yearbooks from Kent View the other day. Wow. I thought of you and others, and it made me laugh and cry.

  16. We talk about Dylan often in normal conversation. My boys think of her and say hi to her when they talk to God. Forever present in our lives🙏🏼

  17. Dearest Harrell/Wood family,
    Reading your posts is such a journey into the farthest depth of life, and discovery. And the “shoe story” I will always relate to, having lost my little sister from this earth. But for you, Casey, I can see such hope and encouragement. I can’t begin to know your pain, but because of your openness, I get a glimmer and a taste. It’s truly a wonder, this assignment from God. One day we will see HIm, face to face, and know the hidden places that confused and hurt us here on earth, and hopefully, see the fruit of such trials and pain. But until then, there is His GRACE AND MERCY, which we can’t do without. I am thankful for your postings, as it keeps little Dylan’s memory alive and gives insight as to how to pray for you and the family. I’m grateful that you “choose life” and keep the doors open for others to follow in His footsteps, walking where you have all trod. One day at a time takes on new meaning, doesn’t it? For me, there were times when it was minute by minute. Survive one minute, then watch the clock as another ticks by. Eventually, they all pile up into longer stretches of time, and one realizes that for this hour, I have lived and shared in His sufferings. Then, we can take that experience out into the world and take another by the hand and help them through.
    God bless each and every one of you.
    Still praying in Belfair.

  18. You, Jeff, Mason & Dylan are in my thoughts daily. I will always feel blessed to have had the chance to know your sweet, sassy, little princess. Your family is the strongest I have ever known. I will continue to spread awareness of this horrible condition and the amazingly kind and caring family that I know that was affected by it’s wrath. I 💓 You Casey. Stay strong and take it one day, minute, or even second at a time, whatever it takes. 💞💞💞

  19. Thank you for sharing your story. You may never know how much it helps. How much I can relate. Our Harlee has only been gone for three days. Today has been an especially hard day for no real reason. I can’t imagine how hard it is for her parents. One foot in front of the other . . . Harlee would not like to see us sad. Wishing you peace and love.

    1. Thank you so much ❤️ I have chatted with Taylor a lot throughout Dylan and Harlee’s journey. Sending so much love to you all ❤️I hope Dylan and Harlee are running and playing together now.

  20. Continued prayers for you all. Going through a horrific illness with a loved one and then losing them for now, is so very hard. Each journey is different, and no one can truly know the pain, sadness and grief each feels, but we can be there for each other by keeping one another covered in prayer. By the grace of God, we know we will be reunited again one day. I’m so sorry for your loss. During Dylan’s journey I was so touched by the outpouring of love and compassion. Your family will always be a blessing to others as you work to help find a cure for this horrible disease. God’s grace and blessings to you all.🙏✝️💗

  21. I know that this day[Mothers Day] will be especially hard. but for now ,its like any other day,for you,with the pain of remembering,and the quietness of a loss.. I have been praying and crying for all of you, all morning.
    … and today is especially difficult ,when I think and remember Dylan…
    I am having trouble finding the right words to say.. all I can say ,though ,is this…all of us share your pain.. but to actually ‘wear the ugly shoes’, would be the most heartbreaking.
    we know Dylan is healed,and happy again.. but the family that bears the grief ,still has to ‘wear’ it for days,hours,minutes,etc. all the rest of your life… Memories are so precious,but they still have a way of making you cry… bittersweet tears.. so much,that it can be unbearable.
    You have shared Dylan with us for so long, and I thank you and your family… cant help but share your pain..I miss her everyday,too..
    Dylan stole my heart from the very beginning of her’ journey’. and, no I don’t want it back.Her memory ,will be a lifetime of remembering to me… Thank you all,for sharing so much with me/us. we tried to ‘blaze the trail’ along with you… in hopes of a better outcome.. but God knows whats best…

  22. The poem is so beautiful and describes the hard road you are on. It brought tears to my eyes. My thoughts were with you yesterday and everyday.

  23. What a beautiful and apt poem. There’s a book called Option B that I once read about finding joy after the loss of a loved one, it talks about how you are ushered into a club that you didn’t sign up for and didn’t want to be a part of, but alas, there you are now, in these uncomfortable ugly shoes. Only other people that have had the same loss can know what you are going through. And the rest of us whom haven’t experienced that same loss can be left without knowing what to say, which sadly often leads to us avoiding talking or reaching out at all. But I’m glad to see that so many people have been reaching out to you, I hope that people continue to have the courage and presence to continue to show up for your family and ask, “How was today?” and not just “How are you?”. It will be a rollercoaster of ups and downs, but I hope that you can find some peace and connection with other parents wearing the shoes and that you continue to feel the support from the rest of us.

  24. Thank you for the update. Your family is never far from our immediate thoughts and always on our hearts. We will never forget your sassy little Dylan💜

  25. (Please use this message instead:)

    This is absolutely beautiful and so prolific…your words and the poem. Dylan will live forever in our hearts, and her legacy will guide us all…I don’t know a stronger family and little girl. I am truly honored to know you; thank you for sharing with all of us. Deepest love and prayers always…xoxo
    Danielle and Gisella
    -We talk to Dylan every night in our prayers!

Comments are closed.

© Copyright 2019 Three Wood Sisters. All Rights Reserved.
error

Enjoying our site? Please like and share!