December 22

Why has it taken so long to make such an observation: we don't seem to get our Christmas act together until today, or tomorrow? Is it because today, or the anniversary of today, is THE DAY that changed our life FOREVER? It's a strange place to be. I can't forget it. It will never go away. It causes me anxiety, stress, inactivity. I don't want to pay any homage or something. How do you recognize something so significant, and just put it away, or nothing at all? Maybe that is the right thing to do, just acknowledge it and move on. 

Thursday, December 22, 2011

A family of four.

An afternoon pediatrician's visit, and apology.

A rushed goodbye. 

A worried phone call. 

A dark & private emergency room.

A CT scan

A mass?? SHOCK

A hospital admission. The pediatric intensive care unit. A worried mama and daddy. A sleepless night in a hard chair. 

The day that changed my life forever. I hate you. I hate what you've done. Yes I'm so so so grateful for what we have now. But I hate this day. I miss her. I love her!

Your 8th birthday

Dear Madeleine, 

Today has been such a trying day. I think Daddy and I both have been neglecting our hearts because it was such a hard day. Eight years ago, we were elated! Walking on clouds! You were our second beautiful baby girl. Your 2 year old sister proudly wore Big Sister t-shirts, and we were such a little happy party of four. 

Why?? Why, my love were you chosen? Why did this happen to us!!? Almost seven years since you left us, and we still cannot process what's happened. We miss you so terribly! Annalise does too. We have this awful, special bond because the three of us loved you, held you....lost you. The little girls know you; they know your smile, your toys. But they don't share what we share. They are too little still to understand why mommy, daddy and sister are crying on a birthday. Aren't we supposed to sing and blow out candles? Isn't it a happy day? 

Madeleine, you blessed me beyond measure. I will always thank God for giving you to me, to us. I'd do it all again if it meant I got to have you in my arms again. I'm just so sad tonight baby, and I'm sorry. I'm truly so sorry to cry on your birthday. We just miss you so much and wish so badly you were alive. This morning Violet said on the way to school that she heard you say, thank you Mommy, when I said happy birthday baby. Her pure, gentle heart made me feel at peace. The rest of the day was just unbearable. I miss you, my darling. I wish you were here. I wish I knew who you would be and what your voice sounded like as an 8 year old. I will always miss you baby. I love you so much Madeleine. Good night my sweet angel!! 

Your baby sister’s first birthday

Dear Madeleine,
Every now and again I go back and read the snapshots of our life frozen in time within these written posts. It helps me to remain grateful for the time we had together, and for the time since. The other day I reread your Daddy's post about how he wanted to selfishly keep you and Annalise to himself. And how he promised to paint the most important and beautiful picture of you to any other siblings you may have. That made me smile and love him even more than I already do. The two little sisters we've welcomed in the last five years bring us such joy and sleepless nights. Violet at 3 years old absolutely knows your face and your status as her big sister- she will tell anybody when pointing to any of your pictures. She asks about you; she will tell me which toys belong to you. She even once told me that she played with you, and I have absolutely no doubt that her statement is true. I KNOW it in my bones that you are in our home daily. I feel your presence. And I know the innocent little children at least in my family have always had a clairvoyance difficult for adults to process.
So it is just a matter of time before Genevieve will also tell me she knows you and knows your face. Today is her first birthday! And I believe you have a special connection. I can't remember if she was still in my tummy or first born, when Annalise asked how will Madeleine know the baby? I told her just like with Violet, that you helped Jesus choose her for us. That all babies are a gift from heaven and you got to know them and love them even before us, before they came into this world and so you have a special relationship with each of your sisters. I will always tell them that story: Annalise got to have you here on earth, and they got to have you in heaven before they arrived. How precious, my Love!!
Miss you so much Squishy.... one day closer baby.

January 9, 2018

January 9, 2018

Five years. F I V E years!? How can that be? I don't need an anniversary to remind me how much I miss you or how long you've been gone. I just need space this day, to love you, to cry, to love our family as gentle and sweetly as I can, because that is what you are to me: pure, precious LOVE.
What this day reminds me of mostly is how much I wish I could hold you again, to feel your arms around my neck, to hear your sweet voice say Mama, or I love you. I'd give almost anything to have that just once more. So today, I will bake. I will cook. I will smile and say sweet things to your sisters and to Daddy, out of my everlasting love for you Madeleine.
See you in a wink my love. And please visit me in my dreams. Kiss kiss Squishy.

Christmas Eve 2017

On this Christmas Eve, I am tucked into my humble little home immensely grateful. I lay next to my sleeping infant, healthy and breathing so soundly in dreamland. I give my girls breakfast and enjoy the chill of the air next to the sweet smelling Christmas tree. It's hard to imagine Just 6 short years ago we were nowhere near this calm and peace, but overwhelmingly more grateful; I was finally able to hold and nurse my tiny 2 month old baby Madeleine after her first brain surgery. How unimaginable! So stressful! Indescribable in words the emotional weight and complexity of those days surrounding her first Christmas.
How we miss her and do not miss those days- we do our best to block the pain of that turmoil. But today, I remember to give reverence to the blessings surrounding me this day. And to acknowledge the thousands of parents today in hospital rooms, surgical waiting rooms, or mortuary rooms giving every ounce of themselves for their child fighting for a life too short lived, praying to God for more time. I honor and respect them, pray for their children and their journey. Give thanks this Christmas for your blessings and truly remember life is worse for someone else out there. Love yours and tell them, for another Christmas is not promised.


Please excuse typos. Sent from my iPhone

Thinking of you

Thinking of this beauty so much the last two days. Thinking of how am I honoring her life, her memory, now and in the future. I think Annalise does the best job at this. She's not afraid to. She honors her every single day, out loud, for anyone to see. Mine is more private, and still painful. I try to press on every day. I can't change her leaving, and I haven't accepted that. I'm stuck. Between pain and hope.
Madeleine, my love for you is so so strong. I try to imagine you running around with bouncy curls as a 4yr old. I wish these could stay happy thoughts, but it crushes me. And in your physical absence you make me a better person. I know you are with me, you see me, you touch me, comfort me. This is an never ending journey and challenge. Love Never Ends.

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.

Just Thoughts

It seems ridiculous that a pop song could bring a grieving mother comfort. Although I have to admit, that is the truth.

               This is the part when I say I don’t want ya [the sadness]

I’m stronger than I’ve been before

This is the part when I break free

‘Cause I can’t resist it no more [my living life]….

I only wanna die alive [not from my grief]

Never by the hands of a broken heart

Don’t wanna hear you lie tonight [the devil in my ear]

Now that I’ve become who I really am [ a survivor]

When it came to Madeleine’s 3^rd birthday this song got me through that period because I did – I felt stronger. I felt unbroken by my grief. I felt like it is ok for me to want to live for today, for this life, for my family in my care. And true to the grip that is grief, I am weaker now than in October. September and October are brutal – Childhood Cancer awareness month followed immediately by her October 2^nd birthday. It’s a daily – near hourly – pounding into my head and heart why my child is not with us, and then the feeble attempt to recognize one of the most glorious days in my life – the day I gave birth to her. Followed by what seems to be the slow motion of the family holidays – Halloween, Thanksgiving, Christmas. We love her so much, and miss her nearly as much. Right now I’m struggling to find the strength to feel ok this holiday season.

Annalise brings me so much joy – her smile, just staring at her while she’s doing something she loves, completely unaware that I’m drinking her in to my memory, cherishing every curve of her face, every quirky lick of her lips, every blink of her long, thick eyelashes. I am so in love with my child and I thank Jesus every day for giving her to me to love, appreciate and teach, as often as I stumble and try not to fail.

My mom said it beautifully the other day – Madeleine was just too perfect for this world; and I appreciate those words so much. At the same time, Daddy and I will never understand or make sense of what happened; why she suffered so much in this life. Life is not fair: no one knows that statement to be truer than a parent who has lost a child.

For whatever reason, today is tougher than others. Today I miss her terribly - not that that changes from day to day, but today hurts just a little bit more, a little more sad. 

Big Sister starts Catholic School

It seems we always want our littles to stay little- relish in their sweetness as long as possible. Before they don't want to spend time with us anymore but run from their classrooms ecstatic to tell you about their first day in their new class. 

Today was one of the happiest days I've had in a long time. It was a very proud moment and a little emotional pulling up to the school. We have struggled to not let out grief overrun our lives, to provide for our family, to keep trying to move forward. And this morning was such a proud moment because despite any struggle we have faced- and there have been many- we felt so strongly that a faith-based education was the absolute best for Madeleine's big sister, and we made it happen, at any cost. I think as parents we want so hard to make our children's pain dissipate no matter the circumstance; the same is absolutely true for a grieving child. We believe wholeheartedly that when nothing in our life with respect to Madeleine has made sense, our faith has gotten us through, given us peace, given us someone to blame, someone to beg, made us throw our hands up in surrender. How can you possibly articulate those feelings to a small child? You can't. But you can give them the power of prayer and faith. And loving teachers that take extra time if your child is having a bad day, like we all do, to express herself and find comfort. I really just couldn't be happier that Annalise is there. It makes my heart SING.

It's incredible how time flying can be both a blessing and a curse to those of us with angels. For those of us struggling through another day with other children to raise, there are beautiful days of joy. Thank God for those, as they get us through another day, another week. 

P.S. I LOVE LOVE LOVE seeing my angel's face in this picture. She makes our pictures complete.

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.

Scientific Education of AT/RT

It's important to read this. Thank you.

http://www.luriechildrensresearch.org/istar_at_rt/


Please excuse typos. Sent from my iPhone

Holding On

Today I really tried.
Long ago I got into the very bad habit of saving nearly every article of clothing for Madeleine. We've got every season from NB to size 6/M and everything in between.
Why am I keeping all of these clothes?? I really cannot get rid of Madeleine's- maybe one day but it isn't going to be soon... when it's all you have left, most mothers of angels will tell you we keep all the toys and clothes and pictures like treasures. What about everything else?
My head knows as well as my heart: I'm not saving them for anyone. So why not just get rid of them?
I really want to believe that God is not done with growing our family, that maybe one day we will have a little one to dress again. I want to believe with all of my heart.
So today I filled up one bag of clothes. Just one. When I could outfit an entire little girl's boutique, I filled up one bag of clothes to pass along.
As far as I'm concerned, that's progress.

Valentine's Day

Although this picture was not taken on Valentines Day for some reason it makes my heart sail and explode with love. Her shining face and electric smile capture me and I'm comforted.

I miss you like crazy mamas. Happy Valentines Day my sweet.

Girl Friends & Sisters

Annalise has been at school now for 6 months and it has been such a positive experience for her to be with other kids. This afternoon on the playground she and 3 of her little girl friends discovered the white blooming weeds in the schoolyard. They each picked a bouquet to give to someone. They all came running across the yard, bouquet in hand, except my little one. She stayed behind, kneeling in the grass. One of the girls gave hers to her babysitter. Another wanted to save hers tightly in her hand to share with her sisters. Annalise picked a spot between two trees to bury hers for Madeleine.

She came back to tell me what she had done. She met back up with her friends, and wanted to show them her little buried bouquet.

Now they are ladybug hunting. Every little girl loves ladybugs. To us, ladybugs are Madeleine showing us she misses us. I would not be surprised if Annalise is sharing that with her friends, and I'm almost curious to know what they will say tonight to their parents at home. "Mom, can you believe Annalise has a sister who is a ladybug??" "Mom, Annalise said her sister DIED… is that true?"  

My prayer continues to be that she will always be sweet in her memories of her sister, and that her friends will try to comfort her when she says she's sad or misses her sister.

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...