Once again, I’m reminded that my life is very different than the life I knew. I woke up to an email notifying of the death of another little girl to neuroblastoma. Not actually neuroblastoma, but sepsis. Blood infection. It took my breath away. I’ve been following Madisyn’s journey and she was responding to an experimental treatment in Vermont. A treatment that we wanted for Tuesday. Tuesday didn’t live long enough to even give it a shot, so it’s irrelevant, but that voice that you wish you could choke off, kept thinking “Why Madisyn? Why not Tuesday?”
I know. It’s ugly. It’s not what I wanted to be thinking, but my daughter just died and I keep going back to the why’s. And now, my God, why Madisyn? She just went in for a routine check up. And then fever. And then sepsis. And then gone. Why Madisyn? Why Tuesday? Why do darling two year old girls get cancer and die?
Then the phone rings and it’s a friend telling me that our friend is in the hospital and could I go down and meet with them because their 11 year old daughter just died from pneumonia or sepsis but they are still not sure of details. What?
Am I really the person that people call when they hear a child has died? How can I be an expert on dealing with the death of your child? I knew I needed and wanted to go. I knew I wanted to hug them and tell them that nothing will make this better but that they are not alone. That there are people out there that have seen their children die and they will wrap you up in their words and their love and shared pain and they will carry you thru this nightmare and that you are not alone. You will survive, even if you feel like you don’t want to. I’m only 6 weeks ahead of where you are, but I am still standing and breathing and we can figure this out together. I’m not even sure what I said. I spent most of the time with Tuesday flooding my mind. It was good though. I know she was giving me the courage to be there.
I left the hospital and went to Fado’s to meet Charley and the kids for a St. Baldrick’s Day event. So cool. Look for one in your area and then go. Shave your head if it feels right or just have a beer and watch other people shave their heads and then look at all of these brave kids in the room that are fighting for their lives and then go give them all your money. Do it in Tuesday’s honor. We need you. These kids need you. Kids can’t raise the money on their own. They need you.
Our sweet friends, Bill and Jenn and their girls, met us at the St. Baldrick’s event and then we decided to take the kids bowling. There we were, eating and drinking and talking and enjoying being together while the kids bowled.
All that, and then bowling.
Goodbye sweet Madisyn.
Goodbye sweet Emmy
Tell Tuesday I love her.
((((((HUGS))))))
Kids shouldn’t die. Its not fair.
Many, many, many hugs.
I don’t remember how I found your blog, but I’m so glad I did. You are amazing… such incredible courage! You’re right! Tuesday is there with you…helping you to bless the lives of others as they too face these challenges. Thank you for sharing your thoughts and feelings during such a difficult time.
Our town did a “St. Baldrick’s” thing today also. What a great idea! I pray that, and KNOW, God will give you the strength you need as you reach out to comfort others who are hurting.
I also followed Madisyn’s website and got such a shock to hear of her death. As I wrote on her page, too many children die from the treatment than the disease.
Anyone feeling helpless who wants to do something in honor of Madisyn and Tuesday, pop over to http://www.vermontcancer.org/index.php?id=351 and make a donation to the Penelope and Sam fund, which goes to Neuroblastoma research.
Just sitting here reading your blog and looking at the picture of me and Tuesday from when I was there in November. I miss my little niece so much!! Wish I could be there to give you all hugs!!!
My heart continually breaks for you. I know it’s not the same at all, but I do the same thing. Everytime someone I know and love dies I tell them to say hi to my brother and father and tell them I love them. I know they know but I still say it. Still praying and thinking of you. Sam
I’ve for the longest time I’ve wanted you to let you know I think of you, your beautiful Tuesday and the rest of your brood a lot.
I can never know but I am truly sorry for your loss.
More words from you filled with gut-wrenching honesty….yes, your courage is incredible. And how beautiful of you to be there for other families….
Hearing the stories of these babies just breaks my heart…..yes, we must do all we can to stop this disease. So wrong….
Thank you for continuing to share.
for you to want to be there to help this family in their darkest hour… while you are still in that hour yourself… To have lost the most valueable thing in the world and be able to share yourself like that… you humble me Jessica…
I can not understand how so many children are loosing their lives to such a “rare” disease… I am asking myself constantly how many children have to die before there is more research for this…. for all pediatric cancer… I can not understand it, i DO NOT understand it.
St. Baldricks is awesome. I’d shave my head too if I didn’t have a funny shaped one 😉 But I have donated in Tuesdays name to St Baldricks… And will continue to support pediatric cancer research in her name…
love and prayers…
Thanking the Lord for giving you strength to go help the other family in their grief!
Continuing to lift up prayers!
Psalms 34:4-7 I sought the LORD, and he heard me, and delivered me from all my fears. They looked unto him, and were lightened: and their faces were not ashamed. This poor man cried, and the LORD heard him, and saved him out of all his troubles. The angel of the LORD encampeth round about them that fear him, and delivereth them.
Prayer Bears
My email address
awwww i am SO sorry so much sadness surrounds you. but if god is bringing these people to you, for strength and comfort, then he must know you are just what they need, and will ease their pain. he is sending them his best angels here on earth, just as he did for you when he called tuesday home.
i pray for strength for you.
Chris
I’m sorry, Jessica. I’m sorry that it feels like you’re the expert when you’re really just figuring it all out. You were wonderful and perfect with them.
Your strength is an inspriation, even at times when you don’t feel very strong.
Love and blessings to you all.x
I can’t help but think that you are contacted about a child’s death when it was so soon after Tuesday because of your strength and courage. All of you and especially you, Jess, have shown the real courage of a mother and her love in her loss. I’m sure that Tuesday is in Heaven right now saying to these new angels that they will be ok and she is there to show them the way and her mom will be ok and so will their loved ones. All of you, and especially Tuesday touched so many hearts. You never forget the hurt but you will heal and in your healing, others will be helped. God is always with you and with Tuesday and all her new friends.We have you in our prayers and hearts.
Love,
Aunt SuSu and Uncle Jim
Thinking of you. Always.
BlogBaby
Jess,
I am so glad you are able to have the strength to reach out and help these families who are going through what you are. Your strength forever will amaze me. You and Charley and the kids will always be in my thoughts and prayers. Hugs!
Brandi
Jess, wow! Really, what else can I say? I are one absolute amazing woman, and I love you. I love you for who you are and all that you do for everyone around you. YOU are a pillar of strength and I am STILL in awe of you! Please know that I am a better person because of you. Because of Tuesday. You rock!
(((HUGS)))
i think it’s great that you can find the strength to help other people deal with loss…..especially since it’s only been a short time since Tuesday past…..you are an inspiration.
I am so sorry that you have to live each day without Tuesday now- but grateful that you can help others with the same heartache in them. You are an amazing, selfless person!
Jess,
You are one of the most incredible people I have ever known and God has blessed me with your friendship.
I love you!
You have a calling. You are a special angel here to spread a message and make a difference in this world. Easy?….No. Worth it?….Yes! (((Hugs))) Love you.
your strength and desire to comfort others who are grieving while you are grieving yourself is awesome. not awesome in the way that means cool, but in the way that means you awe me. hugs + prayers.
{hugs} It’s just not fair.
I love you stranger, thank you so much for your honesty.
Such strength. You are so honest and that takes alot of courage. Once again you make me want to to walk around with a neon sign that says I know the most amazing person and we all need to help her kick cancer in the ass. Love you so very much.
It’s not fair that kids die. It’s not fair that young adults (like my 23 year old brother) that are such good people, that don’t drink or do drugs, die. I don’t understand it and I don’t think I will until my day has come. You are such a strong person. I’m sure you don’t feel it at times, but wow you amaze me and ALL of your blog readers. Tuesday was absolutely beautiful! You have such a beautiful angel watching over you and giving you strength, courage, and angel hugs and kisses. God bless you!
a friend of ours participates in our local St Baldrick’s every year. we pledged for her in Tuesday’s name this year.
your family is always close in my thoughts.
You can offer a parent in grief more than anyone, because you’ve been there. You ARE there. You can relate to what they are going through better than they probably can yet.
You are amazing. Thanks for continuing to share your thoughts. You, Charley and the kids are always in my prayers.
Well said! You are more of a blessing than you know.
Sending you our warmest hugs and prayers.
I lost my daughter almost 3 three years ago in April. She was 15 months old. I just want you to know that you are so right about feelings and the fact that people that have lost children do have the right words to say to others that are going through this. It is something that we will deal with for the rest of our lives, but days get easier, shorter and happier as time goes on. You are doing great and I just wanted you to know that!
Thought I’d use my confirmation verse today. Praying!
Acts 4:12 Neither is there salvation in any other: for there is none other name under heaven given among men, whereby we must be saved.
Prayer Bears
My email address
you are so amazing. I can totally see why people would look to you how to handle losing their child. You and Charley have so much strength and love, that you are like the pilars of all parents. You are right. Children shouldn’t get Cancer. Children shouldn’t die. Im certain Tuesday is always with you… helping you along this journey. Bless you for helping others who struggle with what you have gone through.
Thinking of you … always.
When our special-needs daughter was born I kept meeting all these people with handicapped kids who told me things I wasn’t ready to hear. Then later people would call me to go talk to new parents and I would tell them things they weren’t ready to hear. I would smile and cry with them on the outside, but inside I would be shaking my head thinking, ‘I don’t want to know you. I don’t want to have anything in common with you.’ But there we would be, helpless in our loss and clinging to each other and grasping for any ray of light or hope and feeling guilty for our hurt because our children were at least alive. Of course it gets better. Everything does. And you do what you can to help. And life is somehow more precious for what you now know and the quiet depth you glean.
It isn’t fair. I pray one day when it is our time, God will help us understand our pain. More importantly try to take comfort that you will be with Tuesday again. Don’t forget her gift. Those balloons in your tree. She hasn’t left you in spirit.
I’m so sorry to hear about those two children. My heart goes out to their families.
My prayers are still with you.
Your strength is awe inspiring.
Bless you.
Oh JK, you are such an inspiration. Love and light to you, as always.
When you’re the mother of a child who’s died it’s as though you gain a new job. It’s suddenly your job to reach out to families like yourself. At first, it was the last thing I wanted to do after loosing Olivia, but now I really feel like it’s my calling. It’s been 2 1/2 years and I still find healing in being there for other Mom’s like me. It hurts. The hurt never goes away, it just gets easier. I know that Olivia and Tuesday are playing together as we speak. Big Hugs to you and your whole fam.
I’m am so sorry. Thank you for sharing her with the world through this blog. A very good friend of mine has a son who died and when she meets someone who also has a child who has left this world she tells them this, “Welcome to the club, the club no mother should have to be a part of, that no mother wants or asks to be a member of. There is however a reason you are a member, and though you might not ever know the pupose, it is all a part of something bigger than us, and though it doesn’t make the hurt lessen in any way it helps to know that it is God’s Plan, he has a reason for this and he loves us”.
You and your family are in my prayers.
Hugs and prayers to u! You are in my thoughts often!
No words here, just know that im with you!!
Ever in awe, my beautiful daughter!
Missing Miss T each and every day . . .
Everytime I read your blog I am amazed by your spirit, humbled beyond belief, inspired to be better, and aware that I really don’t have control. I can just pray, keep living, and rock my baby girl a little longer at night.
I am so sorry for you loss. I pray for you and your family daily.
I have nothing to say except, thank you for being there for others when you are healing. HUGS
You really are something Jessica. You’ve taken the worst possible situation a person can imagine, losing a child, and you’ve somehow found the strength (thanks Tootie for guiding your momma)to help others in the same situation that you are in. I am not so sure that I could do what you are doing. For some reason, I think I would be curled up in a ball in a dark room, for a long time. Maybe I’m wrong. I hope and pray that I will never have to find out. You are amazing. Tuesday is amazing. We love you.
I love this post…thanks for sharing your stories of sweet Tuesday & know that you have so much support here in the bloggy world. We are always keeping you all in our thoughts.
StampinMom 🙂
i think about Tuesday, everyday.
she will never ever be forgotten.
Always here praying!
Psalms 18:2-6 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. I will call upon the LORD, who is worthy to be praised: so shall I be saved from mine enemies. The sorrows of death compassed me, and the floods of ungodly men made me afraid. The sorrows of hell compassed me about: the snares of death prevented me. In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears.
Prayer Bears
My email address
I can see why people would turn to you for comfort. I hate that you have to share this sort of understanding with others but so thankful for your example of grace through it all.
xoxo
I just found out about Tuesday’s story from a friend whose daughter also has neuroblastoma. You are an incredible mom and writer, and I thank you for sharing your story so openly and honestly – it has touched many lives. Your beautiful family is in my prayers!!
Jess, you are so … there are no words. How incredible for you to be there for them when you yourself are dealing with a loss. Your such an inspiration to me.
St. Baldrick’s is a wonderful event. I’m glad they are so popular.
You deserve eternal blessings. Thank you so much for sharing during your most difficult time. You are truly an inspiration.
A friend is currently in the hospital delivering a still-born little boy that she was just 3 weeks away from holding and kissing. I pray that she will be able to find strength such as yours to help her through her heartbreak.
I just wanted to let you know that my 9 year old shaved his head Friday night and raised $400 for St. Baldricks Day. I thought of you and your family, and of course, Tuesday.
Tuesday will ALWAYS know that you love her!!!
Jessica, my friends from work just shaved their heads this past saturday for St. Baldrics. I searched for Tuesday’s name on the site, but to no avail… Jessica – i don’t know you or your family, but you and your family have forever changed my life. May God, and Tuesday, be with you forever.
Hi,
just wanted to let you know that there was a huge St. Patrick’s Day Parade in Springfield, IL, last Saturday. We saw lots of kids in their “waggies” which made me think of Tuesday the entire time, it made me smile and made me sad at the same time. Hugs!
Love you Jessica… I think of Tuesday all the time and miss her even though I never met her. You are amazing.
Praying!
Isaiah 26:2-3 Open ye the gates, that the righteous nation which keepeth the truth may enter in. Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.
Prayer Bears
My email address
Why all of these beautiful little girls?
Honey, whether you believe it or not right now, you are a pillar of strength in so many people’s eyes. We don’t attempt for one moment to understand what you are going through or sympathize with your feelings. We do know that you have carried yourself with such grace and strength through all of this that it truly is no wonder why people are looking to you for hope that their lives are going to be okay. That they will be able to continue on after experience a loss themselves.
Much love beautiful lady.
I’ve never met you, but a good friend forwarded your blog to me. I am so sorry for your loss of your precious Tuesday. I am not a mom yet, so I cannot imagine the pain and agony your family is going through. You are in my heart and prayers. I truly believe you are an inspiration to me and especially other people who have lost children. It’s not fair. Love, Amy Alvis (Birmingham, AL)
Know that I’m always here praying!
Isaiah 55:6-7 Seek ye the LORD while he may be found, call ye upon him while he is near: Let the wicked forsake his way, and the unrighteous man his thoughts: and let him return unto the LORD, and he will have mercy upon him; and to our God, for he will abundantly pardon.
Prayer Bears
My email address
hey sweetie! you continue to give me courage and hope each day! love to the whole family!!!!
I saw a link to your blog on another blog that I just discovered tonight. I am a bereaved parent too, and I just wanted to send you some ((HUGS)) I’m very sorry for your loss. I’m still not sure of the entire story but that doesn’t matter. All that matters is that you lost a child and you need support. I’m sorry.
Continuing to lift up prayers for your family!
2 Thessalonians 3:5 And the Lord direct your hearts into the love of God, and into the patient waiting for Christ.
Prayer Bears
My email address
Know that you are being thought of constantly. You will get through this. Take care of yourselves. peace, cindy lou
I’m so blessed to daily read all the love, prayers
and concern for my daughter’s beautiful family.
You are appreciated more than you know!
Grammy Leslie
We just did the St. Baldrick’s event in Pittsburgh Jessica. It was an awesome experience. I have a pic here:
http://stinogle.com/2009/03/20/st-baldricks/
Good luck with everything,
_Rob
Why do we get so sad thinking our babies are in heaven? It’s joyous for them and they know no sadness. It’s us who are left behind that I’m sad for. JK, thinking of you all the time and praying for you and your family every day.
Love you
lisa
Thank you so much for being there that horrible day. It really means so much to us, I know it was hard for you. You are such an inspiration, truly (though I so wish we both still had our babies with us and could just be regular friends).
wow wow, in the reality you also moppet of is same as I. I aspire after yours blog [is] friend, I hope the you will each other change over the info through our blog
I hope you enjoyed the event, the money raised will further help the St. Baldrick’s cause to find a cure for childhood cancer. Tuesday is an inspiration for the cause, your family’s strength and perseverance through her treatment and life only serves as a reminder of the purpose of St. Baldrick’s. Please know you are in our thoughts and prayers.
Thank you.