We moved Willem from the hospice bed to Em and Ba's king-size bed because I wanted Erin and I to be able to lie next to him while he passed. Willem passed at 9pm - right after his favorite cartoon had finished. Lili, Wyatt, mommy, and daddy were all lying in bed with him. Mommy asked for a glass of wine and daddy asked for a beer. The light in the bathroom flickered and I looked at Willem's chest and could see that his heart had stopped beating and that he was no longer struggling for air.
Willem waited to die until we were all comfortable and with him.
Rest in peace my son. My first born. We will miss you terribly.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
Glad to know that Willem was surrounded by all those he loved, but our hearts are breaking for all of you. There have been so many losses to this disease in recent months and we are all so saddened by Willem's passing.
ReplyDeleteKnow that we are here for you,
Kelly Marsh
HLH Family Group on Facebook
Thomas and Erin-
ReplyDeleteMy thoughts and prayers are with you during this unimaginable time. I'm glad I had the pleasure of meeting all three of your children, and I remember thinking how bright and sweet they all were. Hold on to each other tightly.
Robin Robinson (Matt's mom)
Much love and prayers from the Rentz family. He's in a better place now without pain or struggles. May he shine down on you from above and give you peace. We love you guys.
ReplyDelete-Matt, Stephanie, and Amira
You remain in my thoughts and prayers during this difficult time. Through your writings the amazing love you share as a family was nspirational . Thank you for sharing your story and love with us. May peace be with you all. Always in my prayers.
ReplyDeleteTom, Erin & family,
ReplyDeleteAfter you guys left, I went into a bathroom and sobbed. I love you guys, and I will FOEVER remember WILLEM... I am sending you HUGS and love
Kristi
We have come to love you Kristi and will miss you. You are so very special to us. Thank you so much for taking care of our son.
DeleteKristi, it's Dusty..... (your friend from Nursing school) Were you one of Willems nurses? This families story is gut wrenching and inconceivable for me.... If I were forced to find one ounce of something comforting, it would be hearing and discovering that you were one of the souls in his daily life through this battle!!!
DeleteI was honored to have cared for their very special son and his family.
DeleteKristi- words can not describe the joy and professionalism you bring to your job daily. Your special care for Willem was off the charts and so much appreciated. When I went back on Monday morning and you were there I was glad for our little hero to know he was is such good hands. Then, for you to witness the opening of his eyes, squeezing of my hand, and the nodding of his head was as you said, "a gift from God" Thank you We need to go biking with your husband and Mary. Syd
DeleteWe have a daughter in Wyatt's class and have been very saddened by Willem's illness and passing. Our prayers go out to your family.
ReplyDeleteDrew, Sarah, Madden, Maya, & Abigail
From a fellow Meadow Brook parent, I am so very sorry for your loss. Your words have made me feel like I got to know your incredible son, Thank you for sharing him with us.
ReplyDeleteOur 8 year old has battled cancer twice so we can understand some of your challenges these past months but not this ultimate heartache. Nevertheless, if you & your wife ever need to talk, my husband & I are here anytime for you. You can look up our info on our son's page at www.carepages.com/carepages/matthewrobinson
Again, so sorry. We will continue to pray for your family.
Rodney, Jodi, Matthew & Isaiah
Please know that Willem is in our prayers and thoughts. This has affected us very much. We are thinking about your family, and always will be. We are praying the rosary for you tonight.
ReplyDelete-Matthew Salerno from Meadow Brook
Praying for you and your family as you go through this diffcult time and may god watch over you and give you peace.
ReplyDeleteNichole, Jimmy (chief Huck) , Jimmy, Danny and Lily.
Praying for you and your family during this incredibly difficult time.
ReplyDeleteJennifer Webb & Bryson (from Lili's class)
My thoughts are with you and your family.
ReplyDeleteI am here for you whatever you need.
Magda
While you do not know me, I feel as though your family is a part of mine. I am a friend of one of your family friends. She shared with us the trial you family has been going through for so many months.
ReplyDeleteI have read every word since the very beginning. I have waited every day for a post, praying that each one would be good news. I celebrated with you when Willem ate his first bite of food in months. I marveled that of all things, he chose a Subway sandwich! I cried with you when he had bad days and prayed for your family, because every day with a child that is suffering, was a bad day.
I see in your Willem, my children, my grandchildren. I see in you, Tom and Erin, a strength that you may not even know that you possess. There was never one day that your son did not hear an I love you. You could have done nothing more. Your words to us all were a profound inspiration.
Willem’s life on this earth was too short, but it was precious sweet. Do not think of the what ifs and why didn’t we’s. Enjoy the memories of each and every day. They are special and will become sweeter with time.
Everyone wants to say those words that will make your pain go away. Nothing anyone can say will make it go away. It will never be easy and you will always miss him. Celebrate his life, Say his name every day and talk to him….he can hear you…because he will always be with you.
My heart is so full of tears tonight sweet Willem … you will forever be that little boy with the big blue flower...
“The Lord is near to those who are broken-hearted and saves those who are crushed in spirit.” Psalm 34:18
Rest in peace, Willem.
ReplyDeleteI don't know you, but I've followed the story, and my heart goes out to the family of Willem. He was an amazing child. You are an amazing family. I pray for your peace. I thank you for chronicling his story ... it meant a lot. I am so sorry for the loss of your beautiful son.
ReplyDelete~Vicki
You don't know me, I am Nancy Schroeders' sister and she has been telling me of the struggles your family has had along with the triumphs. My husband and I have prayed for strength for your family and will continue to do so. You have been such an inspiration to us and Willem was such a special boy, he will be missed by so many including people he never even knew. Thank you for sharing your son's story and God Bless.
ReplyDeleteKathy Albadri
Tom and Erin - our hearts are so heavy for you. Your strength through all of this has been unimaginable. 1SG and I are praying continuously for your continued strength and that you will feel God's presents during this time in the valley of life. Know that your military family is here for your.
ReplyDeleteFirst Sargent Reed. What is your email sydbaxter1971@gmail.com
DeleteThank you for being compassionate and opjection through this whoe ordeal and for helping Tom make the tough (and necessary) decision to not be deployed. Because of that, he was here for the end. God Bless You and your wife.
Our family has been following your story for a short while and have been praying for you. We are so sorry to hear of the loss of your son. Our son's also attend Meadow Brook and we recently lost our daughter. We'll continue to pray for you, thank you for sharing your son's journey. You are incredible people and have shown tremendous strength and courage.
ReplyDeleteDouglas and Kimberly Vogt
I have been following your story for awhile. I am so sorry for the loss of your son. There is nothing I can say except I will keep your family in my prayers. Your courage is something I dont think I have. To keep everyone informed of what was going on is unbelievable strength. God Bless!
ReplyDeletePat Bender-Levinson/Warrior
So sorry for your loss.
ReplyDeleteWe are so sorry for your loss. We have been and will continue to pray for your family.
ReplyDeleteThe Oderkirk Family
Dan (Den Leader for Tiger Cubs Pack 3689), Erin, Colin (Tiger Cub Pack 3689), Andrew, and Adalyn
As a mother with a grown child with Histio, I cannot imagine the pain your family has suffered watching Willem slip from health to death of this life in such a short time! I am reaching out my arms to hug you, I am crying tears of compassion for you, and I am praying to my God for comfort for all of you...God bless Willem and his life...shared with you.
ReplyDeleteWas turned onto this blog late but simply want you to know the beauty birthed from this tragedy is alive and well. Makes sense you might not find this any consolation so know it's not being offered in hopes of replacing your loss, rather an acknowledgment of the vibrant life that still remains. I never met Willem but my son is quite fond of his friendship with Lili and we're collectively grateful for all your sacrifices. The honest feelings archived in this space have touched many. May you find strength and peace in the midst of these trials, and may your family embrace the undeniable love present here.
ReplyDelete~Calvin Webb
My thoughts and prayers are with your family through this difficult time. I did not know Willem personally but I keep him very close to my heart. Losing a loved one can bring so much sorrow. I hope your family can feel the comfort of peace, and the love of God just as he is feeling too. Continue to stay strong. Your family is loved greatly.
ReplyDeleteBrittany Gorton
My heart is absolutely breaking for you. I am so very, very sorry for your loss of your beautiful son.
ReplyDeleteCarolyn Johnson, histio mom
of 15 yr old Alex
Dear Tom, Erin and Family,
ReplyDeleteOur prayers are with you all. I believe Willem's 'light flickering' was his way to tell you he was being embraced by the most brightest, and loving light imaginable. Please know that the peace you are feeling right now is coming from him and his strength, and may it carry you through the next several days. All it takes is a thought of him, and he'll rush to your side. He will be with you 'always'. We will have a glass of beer and a glass of wine tonight to celebrate Willem. Cheers Willem! We love all of you. The Nicely family
May God's warmth and peace surround your family at this time. Willem is in heaven now. We will continue to pray along side you, please do not hesitate to let us know of any needs you have.
ReplyDeleteThe Chadehumbes
We are standing with you along with our Heavenly Father. May God put his loving arms around you and your family. Willem is beautiful. I got to know him through your blog. He is at peace, no more suffering for him. Know that he is around you always at every moment. God bless you.
ReplyDeleteYou are all in our prayers. We are so sorry for your loss and pray that you can find strength in the little things.
ReplyDeleteThe Melson Family
& Your Family at Village Kids
I have heard of your story through the Meadowbrook Elementary School family. Condolences on your loss. Words truly cannot express the sadness my family feels for yours.
ReplyDeleteWe are so very sorry for the loss of sweet Willem. May god heal your heart so you will have peace. Your family is in our prayers.
ReplyDeleteKim, Ashley, Madison, Kai, Shaylee and Keagan Lang
Dear Tommy, Erin, Wyatt & Lili
ReplyDeleteOur hearts are breaking for your family as we read this morning that your " Amazing " brother and son had passed away last night. Bill & I didn't know about Willem's horrific illness till last weekend when Bill ran into Syd at Forest Hills. There are simply not words that we could say to ease the pain when your child dies so young and full of life. We can't imagine the sorrow and loss you are feeling now. But maybe you will be able to embrace this moment of peace knowing Willem is at peace, no longer suffering, and that he was surrounded by his family that loved and cherished him more than anything else as he started his run along "Goo Beach". Willem is and will always be a "true Super Hero with all the Super Powers". And Willem will always be your Special Angel that you can talk to everyday or anytime you want.
May all the love, support and God's Grace that surrounds your family give you strength as you move to the next chapter of Celebrating Willem's precious life. His wonderful memories will never leave you. Please accept our love, prayers and deepest sympathy at the tragic loss of your courageous Son. We will hold each of you, especially Willem, in our hearts always.
May God bless and hold you tightly in his hands.
Bill & Carole
Thanks Bill and Carole- You guys have been and are great friends.
DeleteOur entire school community has suffered this tremendous loss, even those who never met Willem. Our hearts are broken for you and your family. It is our hope that you find peace and take comfort in knowing that your son has touched so many lives in his short time here. You are in everyone's thoughts and prayers at Thornapple Elementary School.
ReplyDeleteThornapple families
The words enjoy and loss should never be used together but after finding out about your son, I went back and read your blog.
ReplyDeleteEnjoy- I use this word because I enjoyed reading about your parental skills- AMAZING!! Your love poured through your words. Willem, without even knowing him became a personality before my eyes.
LOSS- I cried today for the first time in a long time. I'm involved with liamslighthousefoundation and I've cried over Liam SO many times. I've cried over many children in between. Then I sort of became numb and didn't cry for a while. My brain felt better, my heart felt worse. I'm a crier- not crying makes me feel inhuman.
As I started reading your blog I said DO NOT CRY!! Tears rolled here and there and then I got to the part about willem's specials at school. I LOST it!! If I knew you better, I'd curse. But you get the idea- I'm mad and upset!!
While Reading this post a few things happened- I felt willem's frustration yet I felt your love for him. I also thought of my 6 yr old and her love for her specials at school. My heart is ripped open.
I've read different parents that have lost children express what they hate being said to them in their time of grief. I hope I haven't said anything stupid. I hope I've reminded you of what a beautiful family you have and your amazing 1st born. I hope you are reminded how a complete stranger has been touched by your sons fight. I hope when we are in NYC next tear to raise awareness, your son shines some of that strength on me. I hope time makes your pain manageable.
Jennifer Mercereau- liamslighthousefoundation.org
Em and Ba (Syd and Mary) will be in NYC with you next year and with Lelynn. My email is sydbaxter1971@gmail.com Keep us posted on dates etc. Please email me as I would love to talk to you.
DeleteYou made me cry at 6:45 am. Beautiful words. Thank You. We are all in this together.
I have no idea what you feel right now. I cannot imagine. I will pray your family. Your son was a joy to know. I am so sorry for your loss. I pray God grants you some comfort and peace. -MN
ReplyDeleteThomas, Erin, Wyatt & Lili,
ReplyDeleteWe are grateful to know you, and especially to have known Willem even for but a short time, which I will share about in person. I echo what Beth said above, that "The Lord is near to those who are broken-hearted," because he does carry our sorrows, somehow gets us through, yes? Willem will be OK, I know that - so you guys make sure you are too. One thing no one can deny - his life has drawn many people together in love. That's a heavenly gift worth nurturing and waiting on to bear good fruit. You will see good lasting fruit from your son's life.
And thank you, Thomas, for sharing your heart and baring your soul. None of us would know Willem - or you - as well as we do now without that.
As we say in Hawai'i, Aloha/love-
from just around the corner...
Fred, Angela, Hana & Noah