December 22nd

Day 1.

Day 365.

Day 730.

December 22; the date that it all started. The evening we learned our lives would never be the same in an unbelievable way and we still had no clue what was to come. 

Day 1 there was a mass in Madeleine's brain causing her visibly impaired vision. Pediatric ICU. Life-threatening. Stress. Fear. Uncertainty. Sleepless.

Day 365: She's overcome so much!! We have not been beaten, we've come this far.... What do you mean there's nothing more that can be done? Mestatsis? That moment that for the first time ever, life has truly become hopeless. Madeleine is going to die from this disease. Our poor baby. The pain she's been going through. The disease was killing her all along, and we didn't have a clue. God please give us a miracle! Defeat. Hopelessness. Catastrophic sadness. Floods of tears. Unbelievable. How in the world is this our life!!
 

Day 730: It's still unbelievable. We only want to be home, be together the three of us. As long as we don't talk about it the tears stay at bay. We went to church. In silence I suffer. My sadness is completely beyond my control. In this sanctuary I feel vulnerable, vulnerable enough to (uncontrollably) openly weep and allow the peace of the Lord to embrace me. I've never wanted communion more than right that moment, to feel Jesus enter my soul and comfort me. "May the peace of The Lord give you peace this Christmas..." "Lord, we pray for those who are struggling to celebrate the first year without a loved one..." That one got Daddy too.
 

Two years. The most unbelievable, difficult, sorrowful, debilitating time of our lives. This has been a hard, hard year.
Yet we have never been more in love, more reliant upon one another going forward in life than now. Today there is laughter. Even with constant heartaches, there is laughter. Our daughter still deserves beautiful Christmas memories like every child. It's amazingly hard to put aside our feelings to help her celebrate. Though just as we did last year, with Madeleine home on hospice, we will love Christmas and celebrate the birth of our Lord and make Christmas memories for our daughter. We all miss her so much. Annalise chose her t-shirt with Madeleine's photo on it to sleep in last night. I retreated to my evening shower to cry all of my tears into the streaming water and wash them away to face the rest of the week. Daddy continues to be our rock that holds us up, selflessly giving more of his own grieving time and energy for his girls.
Missy has really accomplished so much: she began the year never truly grasping her sister's death; she began a new routine as a student with someone new in charge, new children to associate with and learn to get along; mom went back to work and she was NOT happy about it. Here we are at the end of the year, after this year we've had, and she was the star of her class's Christmas performance, playing the part of Santa. We attended a classmate's birthday party and the other class parents raved about how their girls love her and how wonderful she performed her part. We are so proud of her. She is blossoming tremendously, despite everything. We hope and pray and are confident that the worst is behind us, the worst we will ever face, and we will emerge stronger than ever, hand in hand. Today was a much better day to finish this post; after a good long cry, an incomparable closeness we share, and God's loving mercy, we are better today. I hope every December 22 gets easier with each year. 

Christmas cheer isn't always cheery

Christmas time is such a special time for children. Just like last year we want our daughter to have special Christmas memories. She REALLY wanted to hang the Christmas lights outside and wanted to physically help do it all. She was so happy. And I was crying. Crying because Grandma sent pictures of the homemade nativity scene she made for Madeleine. At the cemetery she has a poinsettia and mini tree too. It's so beautiful. I love it and hate it at the same time. How did this happen to our family? I'm still in denial. I can't believe my baby is gone. It hurts so much there are no words to describe it. I miss her so badly I'm paralyzed. Today was tough. 

Madeleine's baby book

Even when I was pregnant with her, God gave me signs. Perhaps I didn't want to believe them as real signs. As hindsight is 20/20, I know now. It doesn't bring me peace or tears but to me it reaffirms that God has always had His hand on her.

Like every mother I believed I had a special baby in my belly. In a time of mourning for a close person's miscarriage, I felt guilt that my baby was continuing to grow into our 6th month. Immediately after these thoughts and spoken words, I felt something different: this baby was different. I didn't feel this with her sister; what is different? Why is this one "special?" Now, we all know.

Three months later, Madeleine was born 7 days before her due date. October 2 is the day Catholics celebrate the Guardian Angel.

Today as I got out her baby book and was explaining to Annalise how God put a tiny little her inside my belly to grow, we started remembering Madeleine's birthday. I decided today was a good day to contribute to both of their books.

Back when I was pregnant, I saw a baby book inside the cart of another pregnant woman in Costco. I looked everywhere and couldn't find another one. Why did I want THAT book, why not any other one? I told my mom about it. She ended up buying it for us. 

Today, as I went through Madeleine's book, I had a moment. Another moment of God's clarity. Annalise's baby book I just finished writing about her 4th birthday. And Madeleine's book: it's Baby's First Year. Just one. 

Somehow I made it through this morning without crying. Pages that used to make me deeply sad, I used my favorite pictures to cover up those words that I couldn't respond to because my baby was so special, so different than most other babies. The day she stood up all by herself to play her little piano on the table. The peeky boo picture of Madeleine covering her face. The day she learned to hold her own cup.

I miss her so much. And today I realized God's comforting hand upon me. He tried to show me that she was so special, that she was chosen for his glory. I never have believed that God gave her cancer. I know that God did not give Madeleine cancer. I do know because I witnessed it, Madeleine's unfailing faith that she felt His grace. He taught so many through her. He took a terribly tragic circumstance and has been using it for His glory. He continues to prepare the rest of us for the rest of His plan for us. The human in me, in us, will never accept her cancer, her suffering, her death as just. It's not fair. A child deserves....the human in me, the mother, says she deserves to grow up, to have all of life's wonderful opportunities. The Christian in me says she's so lucky she frolics and plays in heaven. She won't experience any more of a human's suffering on this earth. I hope one day I can really think and believe this way all the time. Because I still regularly feel like we got robbed, cheated, destroyed by losing her. 

In May I will become a fully converted Catholic. The journey I'm currently on is building my intimacy with my God, whom I feel extremely close to right now. I spend more time with Him now than I have in a very long time. We fight, I scream at Him, and He still loves me, still comforts me. Since going back to work I have to keep my guard up during the week just to function; on the weekends I melt into myself, my family, my God. It is really the only way. The only way to feel hope that this suffering will end. One day I will meet my maker, thank Him for His blessings upon my life and embrace Him, and be reunited with the wonderful amazing child he lent to me to love, to grow in my womb and change my life forever.

Wake me up when September Ends

Green Day. Never would have thought a Green Day song would remind me of how I really feel. 

An excerpt:

"As my memory rests

But never forgets what I lost
Wake me up when September ends"

Every September for the rest of my life will be this way. September is childhood cancer awareness month, which is SO very important! It's also the month before Madeleine's birthday. As important as it is to me to continue advocating and doing what I can to help find a cure, it is also a CONSTANT reminder of why my child is not here. Wake me up when September ends. I'm in a fairly consistent state of heartbreak, sadness, and exhaustion; to actively grieve is extremely hard on the body (see Facets of Life: exhausted mom meets grieving mom). To this day I haven't felt so consistently the sheer exhaustion of grief. I'm ready for it to be over. For me, it's a very hard, hard month.

First Day Feelings

Today I started my new job. I haven't worked a full time job in over 2 years. The last time I went to a full time job, I had a big pregnant belly, expecting a beautiful healthy new baby. And while today should be about the excitement, anxiety or humor of the day, I'm reminded instead of another first day, the first day of the rest of my life. Thursday, December 22, 2011. Not many who reads this will remember that day like we do. I remember I called my grandparents to ask for intense prayers. I called my mother on her way to my sister's school play. I made those calls on our way to the emergency room where a neurosurgeon was waiting for us, expecting us. It was the day nothing made sense and I was scared beyond the depths of my soul.

Please read about Madeleine's Day 1. Read it today. Now. Allow yourself to feel what you may, knowing now what you didn't know then. That feeling in your chest, that shake of your head, that tear on your cheek; let it resonate. 

And then please share it. Share what you felt on your first day, the first day you learned about Madeleine, what you thought, what you felt, what it made you do. Please, if you love our girl, please continue to share her story and what effect she had on you. Because that day, December 22, 2011, I wasn't a cancer mom yet. I had no clue, no real awareness about pediatric cancer. In fact I didn't even realize when they said "she has a mass in her brain, we think it could be a tumor," even THAT statement did not translate to me: my child may have cancer.

We have to educate the world around us. Everyone should have a cause: homelessness, human trafficking, animal cruelty, universal healthcare, animal rights. Whatever it may be, have a cause, do something right for the planet and humanity. If you haven't yet found your CAUSE, please join mine. A CURE for children with cancer. 

Facets of Life...: The Language of a Bereaved Mother

I have just discovered another blog, another mother. I keep in touch with my cancer mother "friends," those connected through extreme similar circumstances. But then, some of our stories are no longer the same. I want with all of my heart for their children to continue surviving, without incident - I pray for those children and families. At the same time, it is a painful reminder that my Madeleine.... why couldn't she survive? Why was she chosen for heaven? Why was our family chosen for this forever, unending painful existence? To write the words, "WE MISS HER SO MUCH" does not even begin to fully describe what that means, to the extent of the pain, the seriousness, the anguish, the dull knife prodding our hearts. Those words go into a pop song about a puppy love crush, not to represent our baby dying a horrible death to a monstrous disease.
Yesterday Big Sister kept saying that our baby died, she died from being very sick.
It turned our stomachs inside out.
She's not lying. She doesn't understand how that makes us feel. At the same time I cannot in good conscience tell her not to say it. What a challenge it is to grieve individually and still try to help a small child understand, when we don't understand ourselves.
I'm going to start reading her blog. I may pick up her book. I know we aren't the only family going through this. The hard part for us, as I suspect it is for others, is the cancer part. The struggles and hiatus and emotions and that journey in itself that prefaced this bereavement journey; the absolute best and worst days of our life. How is that possible!!? How can life be so cruel? The best days of my life because they had Madeleine in the flesh and all the most wonderful and hard everything about her. I hope in time it will become the period of our lives that made us strong, faithful, somehow something good from so much strife. I welcome the day I no longer have the tormenting flashbacks of her suffering. Too many to choose from, each more torturous until her very last day. There are days I just don't want to live anymore, not like this. And really, only a bereaved parent truly understands EXACTLY what that statement means.

Facets of Life...: The Language of a Bereaved Mother: Bereaved mothers speak the same language.  We may not be able to translate it to the rest of the world, but bereaved mothers understand i...

Dear Madeleine

I'm pretty proud of myself Squishy. This last week was not an easy one, but today I watched some of your videos and SMILED for I couldn't help myself!! You were so cute!!! And wonderful, blessed memories: your first and only real bath in the tub, your one and only Christmas, watching yourself in the camera of Daddy's phone and telling yourself "hi baby". Such wonderful memories. And I got to watch them without any sadness, without crying, just LOVING you. And it felt good.

I love you Madeleine. Miss you tons baby. 

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.

Big Sister's birthday, 4th of July, Life Goes On

How to begin....

I want to do an un-sad update. I don't know if that's possible. My perception is misconstrued. The other day I shared how and what Annalise prays for. What I interpreted as her heartache and missing her sister, many perceived as faithful. I don't know how long that lasts, or if it ever goes away. Perhaps the closer we get to reuniting with Madeleine, the less it will hurt and always be understood as pain.

Big Sister just had her 4th birthday. It was a lovely two days just the three of us and new experiences. Dolphins are her new favorite animals after a whole day at Sea World and seeing them up close and personal. Sometimes it's been difficult to give ourselves permission to be happy, to enjoy those moments. And then when we do, and our minds play cruel tricks on us: Annalise never got to have a birthday with Madeleine in it. Her third birthday was very important to us to spend alone time with her after so much time apart living at the hospital, we decided then it should just be the three of us. It hadn't occurred to us Madeleine would be in heaven for the fourth. Some things we can't help regret.

This Fourth of July had a special highlight: big sister finally has the confidence to swim on her own. She still hates the loud booms and noises from the fireworks, but a long day in the pool nonetheless. Last 4th of July Madeleine was home from the hospital just 3 weeks with clean MRI results, and to be honest, I can't remember for the life of me what we did that day. The only thing I do know: it was the only one we had with her.

6 months. Tomorrow (Tuesday)  it will be 6 months since we held her last. I wish it were longer than that. I want to look into the future, one day closer at a time, instead of looking back. Looking back included her in our arms, but looking back can quickly become a tangled web of pain, suffocating, despair. Up until now I have never experienced the painful sensations of suffocating: anxiety times 5. Perhaps like an allergic reaction. My throat constricts and nearly chokes me. 

I can only describe my own sorrow, though I know Sister misses her immensely as well. Just recently she woke up very early and refused to go back to bed. I turned on a soothing tv program so she could lay on the couch and relax, it must have been about 6:30 am. About 3 hours later (yes, I know, terrible of me) she exploded into a fit when I turned off the television. She cried and screamed at me, stomped her foot, and cried some more. Upon calming her down, she was finally able to tell me that "the baby channel helps me learn about my sister. My sister is a baby. I miss her Mommy, I want to talk to her. And never again! I can't talk to her ever again!" My heart breaks for her. Though I know she won't ever forget her.
This afternoon we went for a walk and met neighbors down the street, two little boys, 3 and a half and 20 months. It was really the first time I didn't mention Madeleine when thinking of her, watching that little guy walk around with wide legs and that completely adorable way only he can say his big brother's name. I smiled and went back down the street, reminding myself that Annalise is here, she needs me every day, I love her more than life itself and I must never put her aside in place of my grief. I still have one smart, sassy, beautiful little girl to be the very best mommy I can be to her.

"We don't understand why God does what He does..."

To be completely honest, I hate this phrase. 

This world is so out of it, so disconnected, that "people" fail to realize... God did not create cancer. God did not choose for my child or any child to suffer. God did not "do" this to Madeleine.

People need to study history. Study how the civilization of people began to destroy themselves by the quest for power and independence. I am by no means a philosopher, historian, theologian, or the like. I am simply a mother, a cancer mother, who fought side by side day in and day out with faith and perseverance to save my child from death. And in the end, I did not fail; rather, my child was victorious. She received all the glories and peace and beauty of heaven. She is cured. She is without pain. She is an angel. Of course I miss her with every single ounce of my body and soul, but I know that God did not give her cancer. 

Tonight I am reminded of this as I pray for Talia Joy Castellano, a young girl who has become the face of childhood cancer. She is one of many that I pray will not die. For her and for selfish reasons, because I love her. I love who she is, her wisdom beyond her years, her thirst for life knowing it may be cut short. 

We don't know why God does what He does. But I think it's for the movement. Talia is as much a mountain-mover as Jessie Rees, or Avalanna Routh, or any other child bringing more and more people to awareness of this epidemic, to this movement we seek to make serious change, not unlike a woman's vote or racial equality. Children deserve to live and thrive; good parents deserve to be parents. This tragedy should not continue daily, should not be ignored, should be given the attention it deserves because it can be prevented. Just enough people have to care. 

Talia is fighting for her life tonight. I am praying for her. She can be found on Facebook (Angels for Talia), Instagram, you tube, etc. A simple google search and her story can be shared. Please pray for Talia's healing on this earth so she can continue her message for all children affected by and battling cancer. God forbid she become a true angel, her message carries far and wide and not without impact. God bless Talia Joy, Jessica Joy, Madeleine Sunshine.... 

Blog Repost: Are you sick of all this Cancer Stuff?

I know I am!
Would I have chosen these cards for our family? Hell No!
Do I know in my heart that God is in control and has a plan for all of us? Absolutely.
Would I still give anything and everything (short of Annalise) to have Madeleine back, including my own life or her Daddy's? You bet your last dollar we would!

I feel privileged to have connected with yet another mother whose mission is to be an instrument in this movement for childhood cancer.

If you have the few minutes, please read her blog post. It says what so many of us are feeling or saying. http://nicolescobie.com/?p=339

I have never wanted pity for our family, just genuine support. I never knew, I wasn't AWARE of these evil monsters called childhood cancers until it struck Madeleine, I didn't know anybody who was or had faced this. I have made it my mission to enlighten those I come into contact with, because it's for her- all for Madeleine. Her life will not be forgotten about because she went to heaven.

Dear Madeleine

I see your face, your big beautiful smile. I miss you so much!!! How God must have so much faith and love for me because I don't understand why this is our path. what I wouldn't give to go back and just be a regular family! and not have to worry about anything but loving you and takoing care of you.!! I miss you so much. I hate days like today. Started off on the wrong foot, whatever it is-it's all a mess. and all I want is YOU. nothing more, nothing less. and my heart weeps because you're gone. and I just want you here! I know it's not your job to save me. It's not your job to make me feel better. I'm the mommy, it's my job to just be your mommy and the best one I can be, to you and to sister. I didn't get that opportunity. I didn't get all the rewards from being a good mommy. Instead I got a broken heart!!! I just miss you so much. I don't want anyone or anything else, I just wish I could have you back, that you never left. Please God, take care of my baby/ Give her all my love!! I love you my Squishy, my Angel. My heart hurts every day for you. Today it's invading my face, my tears, my joy to be with family. It's so hard. I just miss you,

Amazing friends doing for others

I have amazing friends. Amazing, genuine, considerate people who have chosen to walk beside us and experience with us this truly life-altering, heartbreaking, faithful and blessed journey. This post is from my friend, China. She's amazing. Please support her heart's desire if you can. God Bless.

Hi everyone~

It's that time of year again for the Santa Cruz to Capitola Wharf-to-Wharf race on July 28th!  Last year, your support of my run raised over $1,000 for CASA and foster youth in Santa Cruz County- thank you!  This year, I am fundraising for a cause very dear to my heart, in honor of Madeleine Angela Vazquez, the beautiful baby girl of my childhood friend who lost her life this last January at only 15 months old to Atypical teratoid rhabdoid tumor (AT/RT), a rare tumor usually diagnosed in childhood that results in tumors (often multiple, recurring tumors) in the brain and central nervous system.  The malignancy rate for ATRT is a heartbreaking 11%. Although she only lived a short time, Madeleine's spirit not only changed my life, but the lives of so many.

·     Because of many of your kind donations towards the bake sale/silent auction I held at my work in January after Madeleine's passing, we raised nearly $1,700 for the family to help with Madeleine's funeral costs.  I am forever grateful for your support and honored to know so many giving souls, and hope you will continue that support at the macro level— to find a cure and support the children and families who suffer every day because of childhood cancer.

·        I am fundraising for the Jessie Rees NEGU (Never Ever Give Up) Foundation, which began in honor of Jessie Rees, who was diagnosed at 11 years old with an inoperable and incurable brain tumor called DIPG, from which she died at 12 years old.  Her story launched a global movement of compassion that her foundation continues with through the support of amazing corporations, athletes, charities, volunteers and people like you! 

* One of the attached pictures shows Madeleine with a “JoyJar” from the Jessie Rees Foundation – just one way they spread hope, joy and love to children fighting life altering medical illnesses.
http://www.negu.org/

 Our greatest gift in honoring Madeleine’s life is to live every day to the fullest.  I am running in honor of those who can't— the millions of children and families that suffer because of pediatric cancer, and yet keep striving and believing in a cure. Their strength has been particularly moving for me this year and serves as a reminder to keep trying no matter the obstacle.

I truly appreciate whatever level of support you can give.  Please visit my FirstGiving.com donation page for more information about the Jessie Rees NEGU Foundation and to donate: http://www.firstgiving.com/fundraiser/chinaburyn/chinaburynsfundraisingpage

In honor of Angel Madeleine ~

http://supportmadeleine.blogspot.com/

Thank you,

China

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.

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

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.

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.

Missing You

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.

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?

Don't You (Forget About Me)

It's funny how some things can stick with you, take on new meanings, new memories. Any kid of the 80s loves The Breakfast Club, and it's anthem. http://www.youtube.com/watch?v=CdqoNKCCt7A

We just saw Pitch Perfect, and they reprised the song in a fun way. The song stuck with me for a few days. And for the first time, I was able to think of Madeleine, look at her pictures, dance around the kitchen with Sis to this song, and not burst into tears. We were finally able to create the first happy memory without sadness. That's a pretty big accomplishment. We miss her SO much!!!!! It was a good day

A Letter to Madeleine

We miss you so much Precious!!
We talked about you a lot today. Sister told me more than once that she needs you. I told her I need you too. I can't listen to the audio on these videos.... I literally can't breathe if I do. It still just hurts too too too much. But that's ok; I would live with this pain forever and ever if it meant you did not hurt ever again. And I know you don't. We got a new special book that sister and I read together. It's called Mommy Please Don't Cry, there are no tears in heaven. Sister likes to tell me that when she sees I'm sad. I appreciate her help more than ever now. She helps me to get up and get on with each day. One day she will understand how she saved me during this time of missing you. I miss you baby, I love you so much. I can't wait to get to you. Love you my Sunshine. kiss kiss

Unplugged

Madeleine's services were two days. Thursday, January 17th we had a visitation/vigil/rosary in her honor. Papa (Veronica's grandfather) delivered a wonderful and personal discussion about heaven and the fundamental being of human life. We firmly believe Madeleine is in the arms of Jesus. There was an incredible  slideshow of Madeleine with family, friends, caretakers- everyone involved in her life. We received so many compliments about how beautiful it was for us to share that. We also had a digital photo frame of many of the same photos. We brought it home and it's been sitting on our table unplugged since the funeral. This morning Annalise wanted to plug it in and watch it. She exclaimed, "ooh! look at Madeleine!" and many other phrases as she watched all of the photos come in and out. She talks to her randomly. She likes to "tell me a secret," and almost every time this past week, it is her memory of she and Madeleine dressed for Halloween as Dora and Boots sitting in her chair. She tells me Madeleine is in her heart, which is how I've tried to explain why Madeleine isn't at the mortuary anymore where she can visibly see her. She doesn't quite get the concept of the cemetery or why we go there. It's a learning process for us all.

On the Friday afternoon before the mass, our family gathered together one last time in the viewing room to kiss our angel, to adore her beauty in her human form. This was how I described that day to our group of AT/RT parents:

I can't begin to describe the range of emotions: sadness and loss when we closed her casket, peace and love throughout the service, Madeleine's love in the warm sunshine graveside; anger and fury when the casket was enclosed in the vault and lowered under the earth, completely breathless leaning over and dropping flowers in the grave; then victory and closure when the earth was replaced- we buried that f***ing disease in the ground where it can never hurt us again. I know it will take us many months until we are finally at peace, but today was a step in the direction toward healing.

I wish that feeling continued. Perhaps it will. After time has started to settle, and we've had to move forward with regular life through no choice of our own, it's a little like being dropped in the middle of nowhere in the middle of the night without a map. There is no guide for what we feel or how we feel it. I had never in my life experienced tears that just fall like rain without the drama that comes with crying until now. They just fall, and freely, without any control on my part. One of the hardest parts is people who do not understand that our mourning is a process and we can't just forget about it in order to deal with something else.  I wish it were that easy, and it's no excuse. I want to believe that they don't intend to be hurtful. And really, how can your entire perspective and life not be turned upside down by the death of your child? I get it; I remember the death of a close uncle and how in my grieving of his death, I found myself passing judgement upon his wife for changes she was making without asking or discussing it with her, asking her how she felt and how it was affecting her decision-making. I was also in my early 20s, so in some respect I will chalk it up to inexperience and immaturity, and now that experience is allowing me to somewhat give those people "a pass" and believe they don't know how hurtful they are being by vocalizing their opinions.  I have struggled with this, and Tuesday I received this message in my daily devotional: "Now when problems surround us and we feel overwhelmed by them, we all would like to escape from them even if it is for only a little while!  When we turn our problems over to God we can escape!

 Thus, just like king David who wrote; Though I walk in the midst of trouble, You will revive me;  You will stretch out Your   hand Against the  wrath of my enemies,   And Your right hand will save me.  For in the time of trouble He  shall hide me in His pavilion; In the secret
place of His tabernacle He shall hide me; He shall set me high upon a rock.
( Psalms 138:7 )            ( Psalm 27:5 ) 
For; The LORD will guide you continually, And satisfy your soul in drought, And strengthen your bones; You shall be like a watered garden, And like a spring of water, whose waters do not fail.                                   ( Isaiah 58:11 )
A good friend of mine shared with me the metaphorical parallels of us to the honorable soldiers of WWII.
A person is completely removed from everything normal and familiar, and thrown into extreme conditions unprepared and without much guidance and expected to be victorious. When the fight is over, those people are returned home incomplete; without parts of their body, with post-traumatic stress and without the understanding of what they experience or how to go forth in their life because they are forever changed. They must finally come to a point and "discharge the soldier;" allow that part of your life to truly be over. Hang up those responsibilities forever. Try to grasp the current reality and let go of the immediate past. Learn to live with the loss and adapt in order to persevere.
This is giving me something to reflect upon.

I for one have had to unplug. As long as I am moving, doing something, I am better than if I sit. Being online is very difficult for me. Whereas in the past my writing has given me an outlet, I feel that I am torturing myself to do it, because it is simply just too hard right now. I felt relief and peace initially when Madeleine went to heaven; she was free from her pain and disease, the things I had prayed for every single day. I kept myself busy between then and the services because I was not sure how to cope and not completely fall apart, and I still have my 3yo to ensure that Mommy is not a nutcase because she needs me more than I need to cope. After the service, I unplugged. I left everything familiar to me, except my two most important people. Any grief counselor will tell you to do this, to remove yourself from space you've shared with the deceased in order to be able to recollect yourself. So of course upon return to normal life, the emotions truly start to be felt. I think in theory it's not supposed to hurt as much. All of that which we cannot change is what we long for, what we miss, what hurts the most. Yesterday was my birthday. As birthday wishes go, "all of your wishes and dreams come true...." that just isn't possible. Is it realistic to wish for my life to hurry up so I can get to her? No, it isn't. Because there is a fine line between grieving the loss of my youngest daughter while not missing out on any precious moments with my oldest daughter who deserves her mommy just as much- in fact, more now- than anything else in the world. So for both of us, I unplug. I will try to anyway. Because right now I'm dying inside, grieving from the inside out how much I long to hold my baby; how much I miss her laughing and talking and noises around the house; how much I miss her arms around my neck or her calling after me. Maybe it's her needing me so much I grew so accustomed to. Sometimes I feel this incredible urge to be at the cemetery because I'm not taking care of her because "she" is there and I'm in our life. I know in my right mind that she is not there; she is playing and laughing and dancing in heaven and hasn't even realized yet that I'm not there. I have to discharge myself and stop punishing myself- it's not my fault I couldn't take the cancer away. It's not my fault she had to die. I don't know why God took her back before I was ready and somehow I have to come to terms with that and be happy and smile when she does show me she's still very much a part of me every day. 

Christmas Day Photos

I've been sick the last few days, hardly able to complete any of my tasks getting ready to lay Madeleine to rest. These are things hard for me to let go and delegate like her program, the readings for the mass, the photos. And in doing these as best I can before time runs out, I wanted to share what makes me cry, happy tears and miss her tears.

Christmas Eve ~ Vazquez Family

Mama's Angels

Merry Christmas!!!

Big sister shows Madeleine her toy

New Present

yay for new toys

Shaking her candy in happiness

Daddy's special gift

Christmas dinner

Until we meet again my love, my angel, Mommy & Daddy and sis miss you tons. Have fun with Grandpa.

For Those of You Who'd Like To Help......

Madeleine’s family greatly appreciates all of the thoughts and prayers that many of you have sent. They are thankful for such wonderful family and friends.

Many of you have asked what they can do to assist Jeff and Veronica during this difficult time. We are hoping to take the monetary burden off of the family as much as possible. We are still working on gathering the memorial costs and would like to raise enough to allow Jeff, Veronica and Annalise some much needed time to heal together (vacation). 

 

You can make a contribution in the following three ways:

To donate by cash or check, please contact Veronica’s Mother, Kathy at 775-232-6569 or by email: katskall@charter.net.

Credit/debit card payments can be made directly to Holy Cross Cemetery by calling: (310) 836-5500. When calling please let them know that you would like to donate towards “Madeleine Vazquez’s cemetery costs”. Please inform Kathy at the above email address the amount of your donation.

To donate by PayPal click the yellow donate button on the lower right hand of this page.

Thank you everyone for following Madeleine’s journey and for assisting the Vazquez family during this difficult time.

Obituary & Services

Madeleine Angela Vazquez

Madeleine closed her eyes to this world and passed on to her future as an angel on January 9, 2013. Her spirit here on earth captivated many. Her special eyes stole the hearts of many as she entered their souls gracefully and changed them. She was 15 months old.

Madeleine is survived by her loving family: big sister Annalise Amelia and parents Jeffrey Vazquez and Veronica Aguas; Grandparents Arturo and Victoria Vazquez of Culver City, CA/ Kathy Thomas of Reno, NV/ Rudy Aguas of Reno, NV; Great-grandparents Maria Angela Neira of Los Angeles/ Herlinda Romero of Oceanside/ Roger and Jo Ann Ralston of Redding, CA/ James Thomas of Whitmore, CA; Aunts Janine Vazquez, Jessica Aguas, Jordyn Paquin; Uncles Jonathan Vazquez and Tony Aguas; Cousin Vincente James; & Countless more extended families in  Northern & Southern California.

Events in Memory of Madeleine will be held at 

Holy Cross Cemetery and Mortuary

5835 W. Slauson Avenue, Culver City, CA 90230

(310) 836-5500

Family and Friends are invited to the following

 Life Celebration Visitation Vigil & Rosary 

on Thursday, January 17th from 4:00-8:00 p.m.

Funeral Mass in the Holy Cross Chapel

on Friday, January 18th at 1:00 p.m.

Graveside Burial & Blessing immediately following Mass

Celebration of Life to follow funeral services

Daddy wants to say something!

It is with great reluctance that I have just now decided to write on my daughters blog. Throughout this journey, the love of my life, and mother of my two beautiful girls, Veronica, has taken on the daunting task of informing and updating those FORTUNATE not to have to endure Madeleine's battle in person. With an extremely candid, detailed, and most importantly loving approach, Veronica has provided more insight into what not only Madeleine, but our small and resilient family has had to endure this last year. Those who know me personally know far too well that I rarely am at a loss for words. In fact some would argue that I have this innate ability and timing to say exactly what needs to be said at just the right moment… I was at a loss for words for the first time in my life. In retrospect I now realize that there were several forces at play rendering me silent. The most prevalent of those forces was the self imposed realization that the words needed to adequately describe Madeleine simply had yet to exist. Of course my praise and admiration is somewhat biased of Madeleine because I hold my children in such high regard to begin with. I would expect any self respecting parent feels no less about their own children. The other reason I refrained from sharing, I'm embarrassed to say is a selfish one. The experiences and memories I have of Madeleine are mine, and mine alone. As I consider Veronica to be the better part of me, and I equate Annalise to being the smaller and easier to carry replica of me, I openly and lovingly share with them. Of course if it's the Lords will to ever bless us again with more precious angels, I will certainly make it my life's goal to paint a vivid portrait of their baby sister in heaven for them as well, but that's it. Madeleine and my memories, selfishly are mine to keep, cherish, and reflect on until the day I leave this world and can pick her up and hold her in my arms once again.

I would like to take this opportunity to address a reoccurring sentiment that many have expressed. I just can't imagine what you must be feeling right now!  I can only offer insight into what I am currently feeling as a grieving father and husband. I simply can't speak on behalf of Veronica or my daughter Annalise because I feel inadequate to speak justly  for them. My girls mean the world to me and I fear that I would be a disservice to their feelings. To begin, I don't know how to categorize my emotions at this moment into just one word. I can tell you that what I feel is not only overwhelming, but debilitating. I spent the last several days at home with Madeleine holding, caressing, kissing, smelling, and staring at her, all the while asking every single one of my senses to work more efficiently than ever before to commit my baby to memory before it was too late. There were a lifetime of memories and experiences that I had to consolidate into a very short period of time. I needed to take in as much as possible to sustain me until I saw her again in heaven. I am at peace with the fact that my daughter is no longer in pain. I don't mourn the loss of my daughter to the extent that most people feel I should. It's not for a lack of emotion either. I refuse to cry about that fact that my daughter who never knew a life without physical pain, is no longer hurting. Her disease will remain with her body, and we will lay that to rest underground shortly. Her spirit, which I have fallen madly in love with and will cherish forever, is alive and well. For this, I am happy and at peace. A dear friend of mine who also lost his only son a few years back, put things into perspective for me. He said my baby is in my past, and I will forever have her there to love, but she is also in my future. If it's my wish to see her again, I can't mourn and stop my life for too long. I need to get myself up and continue to live out my life. The sooner I move forward, the closer I'll be to seeing her again… Daddy's coming baby!

The last thing I would like to discuss and acknowledge is more of a cautionary discussion to all of those men out there who have had or will have the honor of having a child. I am not a physical or violent person by any source of the imagination. I am outraged however by the disregard and disgusting laziness that some BOYS have for their perfectly healthy and LIVING children. I begged the Lord more times than I care to remember to transfer Madeleines disease over to me. I would gladly die in return for any of my babies to live. My plea unfortunately never came to be. For your sake, I pray that you never treat your children with any less love, admiration , and selflessness that I had intended for Madeleine. So help you GOD! Always remember, your baby eats before you so much as touch a piece of food. Your baby has everything they need or want within your God given ability before you consider waisting a penny on yourself. Most importantly, your baby will never lay down to sleep with an ounce of doubt or uncertainty of their Daddy's unwavering devotion and commitment to them. Do this, because they deserve no less. If you can't, send your angels to me!!!

I love you Veronica, Annalise, and my guardian angel Madeleine, with all of my being. I will spend the rest of my life proving this to you all!

 God bless-  Daddy