Sunday, April 28, 2013

Dear Madeleine

 NEGU Gala
Dear Madeleine Baby, mommy couldn't wait to come see you today!! I was so proud last night, you were my Shining Star!! Seeing your pictures on the big screen at the Gala took my breath away. I gasped as I saw your sweet, smiling face, and with tears I snapped a quick picture before Daddy and I went to the stage and did a Pay It Forward to another family, selecting a magic #42 to bless another kid fighting cancer, to bring them joy and support, just like they did for us. I know God has put Jessie's family in our lives. Everything they do is for kids like you and Jessie. I'm so proud to be your Momma. Of course I'd give it all up to have you. Sometimes I think that's one reason you had to go; because I couldn't give as much or love as much if you were still here. You were my life!!!! I miss you terribly!!! God tries to remind me that you are safer and healthier than ever there with Him, not to worry because you're in paradise. I know, I know. It will never be enough though to take away the heartbreak I have because you had to go so soon. I miss you every minute of every day. I know we have to keep living, cause that's the only way I can get to you!!!


I miss you crazy bad Baby, but I know tomorrow will be better and we'll be together again. I love you!!!!



This week's flowers for you Baby

Friday, April 12, 2013

Diagnosis Day

TheTruth365 movement shared a diagnosis story today and asked for parents to share their story, if they could. These moments are devastating, fearful, distorted, crystal clear. This is Madeleine's.

"It looks like a germ cell tumor- it's common, successful treatment." 

"I think we should call the website 'Hope for Madeleine', what do you think?" 
"I'm not sure; they're saying it looks like a germ cell tumor, something we can fight with success. 'Hope' to me means it's terminal, and I think her chances are better than that."

For just over 2 weeks we had been sitting in the hospital, waiting. We had already been through the most dreadful two weeks imaginable  the devastation of learning Madeleine had a tumor in the center of her brain; one brain surgery to put in the shunt to relieve her hydrocephalus; a second brain surgery to biopsy the tumor because it was far too dangerous to remove it with its intertwining with healthy tissues. We weren't sleeping, we were sick with worry and stress, yet the days passed lazily without information. Why is it taking so long....

Friday, January 6, 2012
Yesterday Jessie Rees died. Tears dropped off my face like raindrops so steadily as I tried to read the newspaper article. She battled the worst kind of brain tumor- DIPG - and now she is gone. I am in such fear, I broke into hives the day she was admitted and they steadily got worse over the days. Is that what Madeleine has!?? Is this why they haven't given us the diagnosis yet? All they keep saying is that her tumor is extremely rare- they need another test- another day goes by- but nothing about what she has or what we're going to do about it.
It's late afternoon, around 4 or 5 p.m. Madeleine is taking a late afternoon nap. We've been waiting around today, Dr Davidson said we would be discharged today, and it's already getting late. The anxiety is eating us both alive. She came in, a few papers in her hands. She sat next to me on the couch and grasped my hand. 
The pathology has come back, finally. 
It's not what we had hoped for. 
It's extremely malignant. In babies it's almost always fatal. 
Her blue eyes looked into mine, looked down, looked back up again and she squeezed my hand. I closed my eyes and felt my body begin to collapse like the World Trade Center. Jeff looked up to the ceiling and was rocking back and forth, pleading silently to himself, DEAR GOD, WHY!!!!!!! WHY WOULD YOU DO THIS TO MY BABY!!!  TAKE ME!! JUST DON'T LET THIS BE FOR MY BABY!!
I reached for him and we held each other tightly, exploding anguish and fear in our tears. I have no idea how much time has passed before the wails have subsided and my face feels like it's going to burst. This cannot be real, this cannot be real, this cannot be real.... But somehow, this is real, she is telling us Madeleine has CANCER in her BRAIN and it is most likely going to KILL her.
But we can fight this!, she says
I have been on the phone with every leading expert who has treated a child with ATRT from Harvard, Philadelphia, Los Angeles... to bring you what I think is the very best chance for her survival.
Wait, AT-what? what is it?? say it again. Can you spell it out for me?
Atypical Teratoid Rhabdoid Tumor.
Or we can make her as comfortable as possible so you can take her home. It's really up to you, what you feel is best for your family.
You mean there are people who don't try to fight it?
Actually, yes. Some families decide that it's too much medicine and too much to put their child through.
So they take them home to die????? (horror is streaked across our faces) What are the chances then?
She likely would not see her first birthday.
No, we're not going to do that. What kind of possible success are we talking about?
In babies her age.... 3...maybe 5%. But there are survivors. There ARE children who beat this. That's all you have to focus on, if that's what you choose.

At barely 3 months old, we had to make the hugest decision we will ever have to face: doing everything we can to save her life, or take her home to die. And just like that, we told ourselves, we have to try. We're not ready to see our precious baby girl sleeping right there die. We have to try.
On January 6, 2012, our grieving truly began, because we knew from that moment on, we were on borrowed time and we had to make 
every
moment 
count.

The Day God Took You Home

I read this nearly every day. Some days I cry. Some days I feel immense strength.

Thursday, April 11, 2013

God's Playground

Whether you run, walk or drive through your neighborhood, most people enjoy the sound of children's laughter on a school or a park playground. Unless you are heartless, a baby's big belly laugh will certainly make your face hurt from smiling so much. These sounds are like little ringing bells of instant happiness in a world of constant noise. Children laughing are adult reminders of innocence, when stress did not exist in our lives or a time to escape whatever responsibility there was and play. When I was pregnant with our first child, it happened more than once when I awoke to my bed gently shaking from Jeff watching and laughing at YouTube videos of baby laughs in the middle of the night. He was already looking forward to those moments of being a Daddy, and it made him instantly happy to see babies laughing.
So far, after losing my child to such a deadly disease, the only things I can come up with as to why God takes these children home so early is that his playground needs more. Heaven needs more happiness (if that's even possible) and children laughing. Because our children who died from suffering are now laughing and healthy in heaven - Good Lord, what an awesome thought!!!!!! To imagine hearing my baby laugh again when her last day she couldn't; to think of her walking, running, being a happy child! Oh, that brings me such joy! and so many tears at the same time. How I wished I could have given her that, though I can't think that God stole that blessing from me, because it just wasn't within my power- it was within His, in His way. 
And when one child goes to heaven, they cannot be alone; they must be welcomed by other angels, other children, with smiles and hugs and cupcakes and toys and running through the grass and merry go rounds and sing-along songs. I know Hayden was there with a big, beautiful smile and open arms to hug and welcome Madeleine when Jesus brought her to God's playground. And I hope that beautiful image gives her Mama the peace it gives me. I know Kaylynn and Jude were there with pretty toys in hand to sit and play in the grass with Madeleine. And I am proud to know that Madeleine was the reception angel when EJ arrived, and I hope she lifted her arms to Grant when he arrived this morning, to pick her up and do twirly whirlies. How my heart breaks that in our little ATRT community, so many children are going home to the Lord, even when they successfully beat the cancer for more than 5 years. Those were our Hope Angels on earth, those of us who had littler ones battling for the first time. And now, our faith is challenged again, because this wasn't supposed to happen. None of it was supposed to happen; but when a child is 5 years cancer free, over 5 years old, this isn't supposed to happen!! For some reason, heaven needed Grant the Great. 
And this is the other thing I am learning: the children left behind affected by a child's death- sisters, brothers, cousins, friends- are wounded, confused, yet incredibly compassionate children. They are emotional, sensitive, and they talk about death and heaven to the shock of other parents like it's what they had for breakfast. Because in their world, it is their world to be missing someone very important. My 6 year old nephew has been staying with us for a few weeks, and yesterday he confessed to me that every night Annalise has told him that she misses her sister so much- to my surprise, because I did not realize she could express herself in this very clear way. And it occurred to me that she knows Momma and Daddy are sad because Sister had to die, and she doesn't want to be the one to make us sad this time, when she needs to say something. My youngest sister Jordyn has been overwhelmingly impacted by Madeleine that she took her emotions to school and found a way to express her sorrow by sharing with her classmates. Remember Cold Springs Middle School? They raised over $1500 of their own money, 6th-8th graders, in hopes of Madeleine's recovery. Her entire school was devastated when she died. Our little 15-month old Madeleine has profoundly changed young adults and teachers in a little school in Nevada that she never got to see that they are dedicating a full spread in their yearbook to Madeleine's memory and what she taught them. They have also talked about doing a physical memorial at the school so future generations will know how she changed them in the 2012 school years. I would not be at all surprised if we end up a with stem cell scientist, research biologist, pediatrician or pediatric oncologist from that group of young people.
Today I am thinking and praying for Grant's 3 siblings because they are hurting and struggling to understand why their brother has gone to heaven. And there is no doubt in my mind that as a result, they will be very compassionate and aware adults as a result of losing their baby brother.

God bless the Schellhorn family in Iowa.

Friday, April 5, 2013

Her Cross Returned

I'm new to the iPhone. Today I accidentally double-clicked the circle, and Madeleine's song, "You Are My Sunshine," started playing. Happy tears :')

The good news is, Madeleine's cross was returned to her Grandmother.
The bad or sad news is that the cemetery staff were not only responsible, but lazy and unaccountable for the situation.

Apparently something happened during the Thursday gardening; the curved stake holding the cross in placed was snapped in two. Mind you, the cemetery has very specific guidelines for what can be displayed at any time, and they do allow for 2 weeks of items placed during the Holy Week. Madeleine's grandmother followed the specifications to a tee- exactly the right size, material, everything- in order to ensure Madeleine would have her cross for 2 weeks. We can only assume that when the stake was broken, the gardener took everything, including the rosary and stuck it in a bag with her plot number and everything. However, we discovered it was missing on Saturday before Easter when her grandmother returned with fresh flowers. She herself went into the cemetery office and they couldn't locate any information. For several days they inquired over the phone with various supervisors to no avail. Finally she went herself to the maintenance yard and spotted her cross with all of the baby's information.
We are all infuriated at the lack of respect we have been shown in this circumstance, and we do plan to address it. However, Jeff and I are relieved that it was not stolen, that some cruel person did not diminish the memory of Madeleine by covering up her face or defacing the cross for another purpose. It is safe now in her Grandmother's care and can be used again in her precious memory.

Tuesday, April 2, 2013

Easter and threes

It has been almost three months.
In the quiet of today's afternoon while the kids are napping, I'm taking the batteries out of the baby toys to put them into storage. They've been sitting in a basket in my room for 2 weeks. It was hard enough to gather them all together, to separate them from the life we so desperately tried to instill in Big Sister that were there to share, and separate them to put away. The truth is we need the space. I am being forced to put  Madeleine's memories away out of necessity. That was enough that day. I thought today I've got to get these put away already, it's just taking up space, cluttering. I made sure all of the power buttons and switches were turned off; the sound of her toys bursts me into tears every time. And one by one I removed the batteries from each little door. No more life in those toys. Unable to make any more sounds. And I'm going to put them into a plastic box and put it out of sight, just like I frequently do with my feelings so I don't have to feel how bad I hurt, how much I miss her, how much I wish I could hold her or hear her laugh or see her smile. Because every time I allow myself to feel it, a part of me dies inside, over and over again. I know God had another purpose for Madeleine, I just don't like it that she's away from me. One day here, the next day gone- I felt prepared, I felt like watching her suffer was the most unimaginable thing I would ever experience in my lifetime. And perhaps it was. Right now just feels like hell.
This Easter- a new one for the books, just like the one before it, and the one before that, and the one before that. This year our baby is in heaven, and we are heartbroken. To add insult to injury, the gorgeous cross her grandmother made for her disappeared from her grave site.

We all felt like a punch to the gut, another slash across our broken hearts. God help the person who took it, if that's what happened, because they clearly have no conscience at all, stealing from a child's grave. Jeff and I hope and pray it was the wind, and that we can still get it back. Grandma is on the hunt with the cemetery office if it was the gardening staff.
Easter 2012
Last Easter Madeleine was in the hospital, so we were too; Sister was 2 years old and having a blast at church and at the Easter egg hunt and family party- mommy and daddy who....

The year before that Madeleine was still the unnamed baby I was nurturing in my womb, trying to do everything right to make a healthy baby, and Sister looked so pretty.
Easter 2011







Easter 2010
And the year before that Sis was so cute in her cherry dress, and it was our first Easter as a family.

Just three short years. We went from three, to four, back to three. It just doesn't feel right to any of us to be THREE. And Annalise is three years old, and Daddy and I are both thirty-three - will the threes just leave us alone already! It must seem so dumb to anyone else, but to us- three is not our number. We always feel like four, and to us we will continue to be four, until God chooses to bless us with more to love. Right now it's tough, being three...
I have often thought what should become of this blog since we dedicated everything about it to Madeleine. To us she lives on in our home and in our hearts, and many people have told us in theirs too; what should I do now?