I'm dying to blog again!

It has been a long time. Too long. And it's not that I have a ton of time, because I don't; it's the therapeutic and hopefulness aspects that I miss.

When Madeleine was first diagnosed, it was before our Facebook group of AT/RT parents, before her diagnosis actually, when I was researching the many "rare" brain tumors and I stumbled across a blog (I will not mention their name). As a parent looking for hope, I felt my heart literally being tortured; being pressed through a grater and ripped to shreds as I read about this sweet blue-eyed boy and his father's immense sorrow in losing him. I pressed on, because I thought there has to be some sunlight in this very dark place I was reading. Nope... there may have been one or two small rays of light, but for the most part it was just ANGUISH. Debilitating heartbreak. I pulled myself away but clearly, have never forgotten this man's account of loss.

I made a decision. Although I too feel how this father felt, and there are times that I want or need to let something out, I need to focus on the HOPE. For me personally, if I spend too much time in the hurt, it doesn't benefit me or the living children I have that need me. There are too many obstacles in this life that command one's attention in the present to live in the hurtful, debilitating past. I see it this way: I have kept the best of Madeleine with me. I wear her memory daily and I speak to her daily; my daughter talks to her and about her daily; her smile is a focal point each and every day. I have chosen to love her and let that love warm my skin like the sunshine that she is on a sunny day.

From this sunny day in Los Angeles, I have decided to write again. I may change the name of the blog, but M will always be a HUGE part of who I am and the identity of our family. She is still very much a part of each of us, of our daily life, and who we are all learning to become as individuals. So in Madeleine's honor, we will press on.

A Victory for Moms

Yesterday I fell apart. Trying to keep Easter a joyful day, I suppressed all of my emotions missing her. They came spilling from me intermittently on Monday. Thankfully I have good friends who listen; just listen. A head nod; an acknowledgement that this is hard and awful but you're fighting for you and your family; all so supportive. I am so thankful that even in mini crises, I have support.

Today, I arrived to work early.
Last April, I could barely get out of bed if I even went to sleep the night before.

Today I stood in front of a mirror and applied my makeup.
Last April, I barely combed my hair twice in one week, much less put makeup on my face.

Today, I felt just a little victory in the progress of my life: as a wife, as a mother, as a woman.

I know I am not the only woman, the only mother, to feel like life just shouldn't go on. I know I am not the only mother to have these hopeless experiences. I know I am not the only mother who still cries herself to sleep at night missing the warmth of her child's arms around her neck, or a little rub of her child's nose to hers, or hearing that sweet, precious voice in her ears. Those women, those mothers, I love with as much intensity as I miss my child. Because they miss theirs as well. And I know what that feels like.

Today, I am claiming a little victory for mothers of broken hearts, with their missing piece in heaven. We will get out of bed and make our child proud of our strength and endurance to live the life we must with some hope and joy.

I Cannot Die Every Time

Yesterday was a doozy.

In time, I know my perceptions will go back to the way they should be; thinking of other people's circumstances and not personalizing them. To some extent, I do that now. The one exception is children with cancer. Who die.

The last time I posted about Talia Castellano, her outlook seemed grim, and I braced myself. I had grown to love this little girl who accepted in her heart that she was chosen for something much greater than herself. She had become one of the most public faces of childhood cancer. She wanted to make a difference. She wanted to bring awareness to the serious lack of interest in funding cure research for children. It only makes sense. It's common sense because kids have their whole lives ahead of them, she told The Truth365 in her interview with them in 2012 (a wonderful documentary for the cause I might add). I loved her for the child she was, the things taught to the masses through her, and the love and compassion for kids with cancer she stirred in the rest of the world. Although I didn't know her, I understood her struggle. I too was in awe of this little girl, for God's sake she was only 13 years old! Her vocabulary was beyond her years, she was fashion forward, beyond internet savvy, technology savvy: she was a firework. Truly, and completely.

So when she wasn't doing well, I dared not say, I felt in my heart she was going home soon. I truly wanted her to be healed, but I also wanted Madeleine to be healed. I braced myself for the flood of emotions. It always strikes me deep in my heart when another child passes; I also cry when these kids have triumphs and milestones they meet, thriving. I'm still so tied up and twisted in my emotions over my own daughter, how could I possibly keep my mind right for others? Each child is special; there are some that are especially special. Which is why I was devastated in April, when SARAH went home, or last December when HAYDEN took her last breath. And why I was so heartbroken and tears flowed like rain yesterday for TALIA. I didn't personally know these girls, had never met them, BUT I LOVED THEM. At the same time, Jeff brought up a very good point: am I truly mourning their death, or am I reliving the anguish of Madeleine each time? It could be both. Because these times of deeply emotional feelings are not to be personalized, it is not about me, or you. It's about that child, that family. And yet I still pray for myself when I pray for them. I hope that doesn't make me a terrible, self-centered person. I think - I hope - it's just a still brokenhearted mother missing her own child. And having lived through that once, I deserve to never live it again. Yet that's what I'm doing to myself. I can love them and admire them and cheer them on from the sideline to have faith, have hope, and fight for the cure till there is one. But I can't love them all like MADELEINE.

The neighbor across the street had a beautiful, full, leafy green tree a few months ago. I was aghast when walking my dog I saw him cutting the tree off completely. The entire fullness of the tree was gone. All that was left were what looked like tall stumps for branches. Bare. Vulnerable. Colorless. I thought for sure that tree would die. There was far too much of that tree cut away to survive. Today, and only today for some reason, I noticed that tree. Lush. Green. Healthy. I realized that one day, I too will be full again. My branches will grow and restore to be healthy again. There may or may not be any sign of this period in my life when I felt like I would die, when I felt bare, vulnerable, colorless, hopeless. I may be an amputee now, missing a huge part of my heart that I have always worn on my sleeve, sometimes to a detriment, but one day I will appear whole.

God Bless Talia Joy, may Jesus hold you close with Madeleine in the kingdom.

Changes

I haven't updated recently because I remember when we first began Madeleine's cancer Journey we were scanning the web looking for insight to this disease- anything that would give us hope that she could win her battle. And as you can imagine, there were very few happy sites- because all of these parents started out (for the most part) with hope and faith.... and all their children died. The blogs became a very somber place and completely overwhelming for us because we were trying to maintain our faith and focus that she would win, she could beat this, she has to be okay because we are faithful... and the sorrow I read about from these grieving parents would overtake me like an undercurrent wave in the ocean. I couldn't handle it. All I wanted was somewhere in the world to find another baby who had won their battle against ATRT and was now thriving in pre-school, elementary school, first communion, ANYTHING. 

So back to our updates:: I was doing GREAT for a while. We had gone to a grief camp in March, and while the weekend was completely exhausting, I left feeling lighter on my toes, as though God had taken some of this burden from me and I could actually begin to feel ok, dare I say pretty good, and I could begin to help other grieving mothers. In April- on April 17th exactly- a dear, sweet little girl close to my heart went home to heaven.
And I fell apart.
My tears were so strong and forceful I couldn't speak that morning; I quite literally couldn't get out of bed that day. I was reliving the every emotion and every moment of the day and night that Madeleine died. My own anguish over my daughter's death to such an awful disease led me to believe I understood the very thoughts of Sarah's mother. And now having been part of mothers' support groups, I know that I did that day, understand and was feeling everything she was going to feel, because she was still in shock. The shock phase of grieving is a lot like driving in thick fog- you can stay the course without much distraction but there is no real thought or feeling taking place because it just doesn't seem real.
So the 17th was a dreadful day. And 10 days later we got into our best dressed and stepped out, alone but as a unit, to celebrate and honor Madeleine at the NEGU Gala. The organization blessed us by highlighting our baby and our family as a means to demonstrate how a relationship is begun with a family through the first gift of a JoyJar. Her pictures, her big beautiful smile, flashed across a big screen and it took my breath away. It turned out to be a lovely evening, celebrating the children fighting and succeeding, and raising all this money to help more and more kids fighting for their lives. For us it was also very emotional and connecting to be with a family so publicly going through our same trials in bereavement, yet so privately holding their real daily anguish like us. We immediately felt like we had known them for years, felt like they were family, and I hope our time together brought them as much comfort as it did for Daddy and I.
Shortly after that, many other things took place in our life that actually helped distract us from the overwhelming sadness we had been feeling. We went from our family of four, back to three, and in some ways, back to four, since my 6yo nephew has been staying with us for the summer. Talk about a completely different household for all of us...

There is truly only ONE thing that is as it was September 30, 2011: our home. Other than that, NOTHING is the same. We don't recognize our old life. We are different people to the very core, we don't feel the same, we don't think the same. Even Annalise. We have all lost greatly.
Isaiah 61:3 ...to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of despair....
And as a result, how to do you settle back into an old life? It cannot be done. So eventually I began to look for what I thought would be cool [distracting] and convenient [close] to go back to work. I fell in love with a job at NFL network. I applied for some upper management position in the glamorous 90210. But nothing was coming through. Hmmm.... why not? I'm a very qualified individual. And then it occurred to me: I am not only qualified, but usually passionate. And with my heart ripped out of my body and shattered into a million pieces, there wasn't much passion to be had. I have always taken great pride in my career, choosing to focus there instead of my personal life for many years until I started a family. And I realized... I have passion. It's for cancer and grieving families. Children damaged but alive after a treacherous battle to claim their lives, and they prevailed- what inspiration, what courage! I want to help those children, those families, those organizations who offer support and genuine concern for these families. Because more than likely the people running these organizations started them out of the ashes of their own hearts.
I have a dear, sweet friend, a cancer mom whose daughter is recovering beautifully from a tumor in her leg, who wants to start a foundation because she is overwhelmed at the support she received during their family's time in the trenches of cancer treatment. God bless her and her tender heart. What I fail to mention is that she has not one, but three daughters. Her little surviving warrior is a twin. She's got her hands full with lots of flowing blonde hair and Barbies. And to her I say, you have done your due diligence... let me carry that burden for you. What I wouldn't give to be raising my daughters with their sister.... Let me give back for the both of us. Devote yourself to raising your daughters. And all the love and passion and grief I have for my Madeleine, Sunshine for all of us who love her, let me pour all of that back into these organizations with the talents God has given me. I love you Talli!!!
So that's what I'm doing. I'm planning to use every resource I have to bring more money to these organizations from all of the rich people, foundations, and grants that will fund programs and services for these children and families. Wish me luck.

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.