(You may want to read the entry from November 3rd before you read anymore of this one….)
I cleaned today. Well, I did the annual cleaning that takes place shortly after Christmas. It’s been on my mind for the last several days; and something I haven’t looked forward to, but I did it anyway.
And as I packed up and put away I cried. As I cleaned up the decorations and clamped the boxes shut, I cried. I cried, and I cried. It was a difficult day.
I cried because when I hauled this all out of the attic in early November, and out of the dust covered bins, and placed it upon my shelves and around my home, Caitlin was by my side; she was a part of it. She helped me pick out every decoration for our new rainbow tree in the family room. She sat outside while we decorated the front yard. She laid on her downstairs bed watching, while we strategically and loving hung her “rainbow” in lights on the back pergola.
So today, while I take it all down, my thoughts consistently repeat themselves,” Caitlin was here when I put it all up. Now, I’m taking it down, and she is gone.”
Something has begun to frustrate me; so I am certain those closest to me are tired of hearing it. Everything seems to be identified as “before Caitlin (was diagnosed/had surgery/started chemo/died)” and “after Caitlin(was diagnosed/had surgery/started chemo/died).” I’ve listened to myself speak, and I don’t know how anyone can tolerate it anymore. I hate that I am identifying my life as ‘before’ and ‘after’ Caitlin (anything). I promise I am trying to stop saying that. I promise I am trying to stop establish my life as before and after caitlin; but I find it incredibly difficult, given the impact and importance she had on my life.
Today, I worked with a ferocious mindset, to find the positive, and amid the tears, find reason to give thanks and celebrate.
It took me until the 3rd room to truly embrace what I had set out to accomplish. It wasn’t about getting Christmas “put away” or “cleaned up” today. It was about finding Caitlin, hidden among it. She shined brightly, in the ornaments on her rainbow decorated tree. I found her easily in the handmade decorations from years before. She was all around in the rainbow colored lights strung up the staircase, and around the house. She was unmistakably present when we took the star of the top of the tree, or unplugged the lighted angel in the front yard. But in the living room, I found her hiding.
She was there, as I cleaned up the remaining gifts still left to be put away. It was like she suddenly jumped up and said, “Here I am Mama. I’m hiding over here!”
Yes, there she was…
She didn’t unwrap any presents this year. She didn’t tear the paper from the packages or get excited about what Santa left for her. She didn’t watch with anticipation, like in years past, as one of us opened the gift she had taken care and time to pick out and wrap for each one of us. No, that isn’t where I found her today.
Today I found her as I remembered a text from a few days ago…
“…a gift from Caitlin…”
I didn’t write it, but I received it.
And in remembering those words, those 4 simple words, I found the gift my daughter had given me this year. She gave me a chance to renew and reinvest in friends and family I may have begun to take for granted. She gave me an opportunity to reach out to people that were casual acquaintances, or complete strangers, and she let me open my heart and my life to them easily, and gratefully. And, Caitlin gave me back loved ones I had accepted as ‘lost relationships’ or ‘in the past.’ She allowed those loved ones to return to my life and help to bring me heartfelt comfort, support and tremendous love after many years.
She left me a gift. She gave me a present.
My Christmas cookbook has been returned to the shelf, alongside all the rest of the cookbooks. My favorite everyday cookbook sits on the pretty wrought-iron stand on top of my refrigerator.
And I planted a tree in the front garden this morning…
It isn’t Martha Stewart, and it is entirely too bright…
And for once in my life, I don’t give a damn. All my love, d
The first day of winter was yesterday. It was the solstice. A gentle and loving text from my cousin reminded me that it was the darkest day of the year; the day with the least amount of sunlight. Her text finished by saying she knew my heart was closer to this day than the bright light of Christmas that was coming so soon after this dark day.
Those words stayed on my mind all day. They provided comfort, because even though we haven’t spoken, she knew my heart and the heaviness it was feeling. I was shocked she could know those feelings and put it into perfect words for me.
I struggled, my heart engaged in a tug of war with itself. Pulling hard, from one side to another and back again; wanting to stay in the dark of the solstice day, and then wanting to move away from that darkness.
So, I have decided that if yesterday was the darkest day of the year, I have 364 days that will contain more moments of illumination. It won’t be noticeable as we progress from one day to another. The moments of brilliance will creep in gently and quietly. They will slip in when we aren’t looking, or paying a bit of attention. But, 4 months from now, I will certainly catch myself talking to a friend, and I will be shocked (like I am every year) that the kids are able to play outside longer, and bedtimes have gotten a little later, and “Wow. The days are longer and brighter.”
So I have put myself on that path; the one that opens up a little more sunshine to every day. And as I walk this road, I will be devoted to allowing that sunshine to touch my heart. I may need a new pair of sunglasses soon…..;)
A final event locked up my thoughts over the last 24 hours. This afternoon, Cole sat to watch an old Christmas favorite, The Grinch Who Stole Christmas. You know the one, Jim Carrey is the Grinch, Anthony Hopkins narrates, and Dr. Seuss’s incredible story is brought to real-life, instead of a cartoon world. You almost believe that Who-ville exists, we just haven’t visited it yet.
I watched as I cooked and cleaned and played with Campbell and Courtney. My sister came home from running errands and sat on the sofa. For the last 30 minutes of the movie, Campbell settled into my lap and we sat together to watch the end.
And then, the credits started. Faith Hill’s incredible diva voice filled the family room with Where Are You Christmas? I’ve always loved this song, but today it earned a new place in my heart and took on new meaning. I cried. Deidre cried. Campbell cried because we did, and admitted (again) that she missed her YaYa, and wanted me to go to heaven to bring her home for Christmas.
I’ve printed the lyrics, so you can see that this song, that is initiated from a sad, confused and possibly angry heart ends with acceptance. That acceptance comes from love; pure and unconditional and never ending. (But I encourage you to listen to the song, it’s so much more powerful than just reading the lyrics.)
Happy Holidays my friends. I hope all your hearts can be filled with love, and acceptance for what brings your heart pain. d
Where are you Christmas?
Why can’t I find you?
Why have you gone away? Where is the laughter
You used to bring me
Why can’t I hear music play?
My world is changing
Does that mean Christmas changes too?
Where are you Christmas
Do you remember
The one you used to know
I’m not the same one
See what the time’s done
Is that why you have let me go
Christmas is here
Christmas is here
If you care
If there is love in your heart and your mind
You will feel like Christmas all the time
I feel you Christmas
I know I’ve found you
You never fade away
The joy of Christmas
Stays here inside us
Fills each and every heart with love
Where are you Christmas
Fill your heart with love Where are you Christmas?
I am a fan of rainstorms. I like a good solid long lasting storm with lots of rain; but I’m not a fan of the wind, I’m hate it when the tornado sirens start screaming and I despise lightening. A good rain will engage all your senses and set your mind in a different mood. I love to sit on the back porch while it rains hard, causing my eyes to squint just a touch, to see all the drops that fall. There is no comparison to the sound a strong downpour makes on the roof of the same back porch, mimicking a song that is never out of tune and doesn’t ever go out of style. The rain even smells good…(maybe that comes from being raised by a man who grew up on a farm as a child), but I promise, I can smell the rain, and I like it. And, a rainstorm almost always changes the pace. You’re forced to change plans, since something is always organized to be done outside. You have to slow down, sometimes even stop. I find a good rain calming, comforting and peaceful.
A good rain storm is sometimes hard to come by in Florida. Almost every day during the summer, Florida gets a little rain. Its typically in the afternoon, and can last 20 minutes or an hour or two. It usually pops up quickly, and disappears just as fast. Those afternoon storms are accompanied by lots of thunder and tons of lightening. The thunder is often easy to tolerate; it can be heard from further away and you can anticipate and prepare for it as it moves closer. By the time it’s overhead, you are ready for it, you can hear a couple of loud booms that shake the dishes in the cabinet and the pictures on the shelves, and then it moves on as gradually as it moved in. It creeps away in a step-like fashion, until you realize you don’t hear it any longer.
Lightening, however, is an entirely different story. Lightening jumps up out of no where and scares the heck out of you. Sometimes it manages to show up without any rain, when you’re certain there couldn’t be any around. It’s a bright, bold, jagged dagger thrown from high in the sky. It’s everywhere in Florida, and its damn violent. It pops and crackles and sizzles. I’ve been close (within a few houses) when I’ve heard it touch the Earth and its frightening. It starts fires; (3 neighbors in 2 years have had significant fire damage as a result of lightening strikes.) You learn quickly about lightening when you live in Florida; at the very least, you learn to avoid it and respect it as powerful.
Today marks one month since Caitlin died. I once said I wasn’t going to mark anniversaries of sad days; today I did. I tried not to. I willed myself to forget it. As it approached I tried to lose track of the date and just move thru the week. (Impossible given the number of loved ones birthdays it surrounds.) Then, I decided I’d curl up in my bed and hide under the covers all day, after I got everyone off to work and school. None of that worked, so instead I remembered, and with lots of love, made it thru the day.
I think my grief over the past month has been just like those summer storms in Florida.
I have prepared and anticipated the thunderous part of mourning. I have made accommodations for the thunder, and with some shaking of the dishes and picture frames, I’ve made it thru. I have good family and friends near and far that have helped to insulate me from the anticipatory thunder in the last month. I am so grateful for the gentle, kind and loving arms and words that have wrapped around me, all the while trying to allow me the opportunity to preserve the thought that I was maintaining strength. Looking back, I can see where and when and how each of those people held on to me, and held me up. I have had little strength from within…instead it has been loved ones who refuse to let go….thank you.
The lightening however, has been overwhelming and at times reduces me to my knees more quickly than I ever thought possible. Just like the thunder, lightening has come in just like those summer storms, as well. Lightening strikes when I am asked “How many?” by a hostess, and before I can think, I rattle off “Six.” Lightening has struck me when, at least 6 or 8 times a day, I survey my children and panic, wondering where my last child is, before I can stop the thought and remember, “She’s gone, forever.” That is what lightening is like. It is seeing Hello Kitty anything, sour patch kids candy, an advertisement for Rise of the Guardians or Hotel Transylvania, or hearing a song from Wicked or Annie. Lightening is watching someone walk away from you because they’re too scared to talk to you. Lightening is watching your child suddenly encounter an object or moment that reminds them of their angelic sister, and become so overwhelmed with grief themselves that you are left stunned and speechless, again.
I pray, and hope that the the lightening becomes less, and the thunder becomes more as we move thru our days. I try and be realistic though, knowing that in the next 6 weeks we will celebrate Christmas and New Years, and then Cole’s birthday. The next “11th” is my birthday (ironic or a wink? I’m not sure) and finally, Campbell’s 3rd birthday falls on January 13th; a day that, given the opportunity, I would crawl into bed and not come out for 24 hours. You see, January 13th is the anniversary of the day this journey began.
Maybe, instead, by January 13th, we will have found our way to that promise that often follows violent and angry thunderstorms…..
In the last 11 months, I have been able to clearly define words and phrases that before I hadn’t truly understood.
The dictionary app on my phone defines heartbroken as “crushed with sorrow or grief.”
That’s not enough words. That definition doesn’t have enough emotion. Those words cannot possibly explain the depth absolute and sharp pain in my heart. It is heavier than crushed; it is bigger than sorrow or grief. That defintion doesn’t tell you my heart feels like a piece of fragile stemware, that has been dropped from a high shelf down onto a solid, thick piece of granite; shattered into a million pieces. And those pieces, no matter how hard you try, could never possibly all be found…some are simply gone, forever.
This heartache hasn’t settled in fully, until this past Monday. My week has been unbearable at moments, tolerable during others. The first 14 days were easy to manuver compared to days 15-20. The 2 weeks following Caitlin’s death were filled with details, errands, family and visitors. But Monday, oh yes, Monday…everyone went back to their routine. Days were filled with work, school, activites; “normal.” Except, my “normal” is no longer here. My “normal” died. For more than 10 months, I had Caitlin by my side. Some days were filled with sad and difficult medical or illness related appointments and side effects. Other days were filled with fun, happy and loving moments and memories.
And as I reflect on those memories, I realize some of the other words I am able to better understand the full meaning of now. I comprehend the definition of humbled, happy, difficult and scared. I know what the phrase “fight for your life” really explains. I know what it feels like to face down death, and what it feels like to lose that fight.
Of all these words and defintions, it is heartbroken I feel the most.
the last defintion I have been able to more clearly “get,” and feel.
The app on my phone defines love as “a warm personal attachment or deep affection.”
Well, that’s wrong too.
That doesn’t explain the way my heart has been infused to care about others, especially my family, most specifically my children. That defintion doesn’t account for enourmous passion, devotion and need that exists when I ‘love.’ That defintion doesn’t allow room for the enchantment, facination or captivation I feel deep inside my chest.
Because love, and how I love, and who I love, and why I love all makes more sense to me now. It’s bigger and deeper too, than I have ever understood it or knew it to be before.
But there is another kind of love that has been redefined for me.
By each of you, toward my daughter, and my family.
Through your gentle words, tight hugs, yummy food and caring actions you have shown what one person can do for another when moved by love. Selfish, conditional and deserving are not in your vocabulary when you define love. Your incredible love has helped to carry my family. You have shown that love does not know the word “stranger.” Your love has transcended many years and much distance between communication and friendship.
It is this love, that has insulated, warmed, protected and given strength. Thank you.
We will heal our hearts, I truly believe we will. (Because if we don’t believe it, then we can’t get to that healing place.) It will take a long time, I am certain. While we have fought for close to a year, we are only now feeling the grief of losing a dear part of our family. It is a hole that is deep and wide. We will hurt and ache when we expect it to be difficult, and when we least expect to be effected. But we work toward finding a place where our sharp and stabbing pain will dull to an ache instead. We will look around, for the shards from the glass that dropped on the granite. We will clean it up the best we can, and hope we see the missed pieces prior to stepping on them with our bare feet.
Until then, thank you, for keeping us in your hearts, and thoughts and prayers.
All my love, d
Campbell started taking a pacifier when she was only a few weeks old. Out of 4 children she was the only one to ever want a pacifier. I promised myself, her and everyone around us that by her 2nd birthday we were going to be rid of it. As we approached that day I began to summon my strength and dig my heels in as I prepared for what certainly would be a battle. And then, well, you all know what happened on Campbell’s 2nd birthday….it was that cold, gray, Friday…January 13th.
So, as we began an entirely different battle, I granted everyone to cling to their current coping devices. Caitlin was allowed to continue to suck her thumb and take puppy anywhere she wanted, and Campbell was permitted to keep a paci for her mouth and one for each hand. We decided eating carbs was a smart decision again. Courtney was allowed to go to the gym almost without question to tumble and Cole was given more leniency when it came to playing video games.
About half way through our journey over the last year, I decided to start running again. It had been a long time; but I needed an outlet for some challenging emotions, and the idea of going to a gym was entirely too claustrophobic a feeling. So I started running. I’m not a runner though. I know that may sound like a contradiction, but I run, I’m not a runner. The difference is this: runners are good at running, do it often and they enjoy running. I run because I need the physical release and exercise. I run because it makes me stronger physically, and that gives me strength mentally in some deformed line of thinking. Running also gives me a chance to jam my earbuds deep in my ears and turn the music up loud. (I know it isn’t good for my ears….)
It has been 2 1/2 weeks since I last went for a run. Well, that is, until last night. Last night I went for a run. It was so very UGLY. The night air was cold and wet with a faint drizzle. It was slow, like a turtle-slow. It was clumsy and awkward; I felt like I was tripping instead of running. It was painful; my ears hurt, my chest hurt, my legs hurt and my head hurt. I cried almost the whole time; and that doesn’t make for easy running either. I stopped half way thru when a good friend drove by and slowed down to say hi. And then, THEN…
I FINISHED! I finished that run.
Maybe that’s how healing from the loss of a child will be; painful, slow, clumsy and ugly. But maybe, with time, patience and a lot of love, I’ll finish…
After a shower and some cuddle time, I took Campbell to bed. I stayed with her for a while as she fell asleep. I lifted my head in the dark and was shocked as my heart took a leap. Her pacifier was glowing in the dark. I haven’t seen this paci in a long time; months actually.
It quickly reminded me of the incredible and beautiful candles and luminaries from Sunday night. It brought (good) tears to my eyes as I slowly backed out of Campbell’s bedroom. I paused in the hallway for a minute…
Maybe Campbell can hang on to that pacifier a little while longer. I like its glow.
With a lot of love, d
This morning started out sad as we let go of the last physical part of Caitlin. Today, Jeff and I met Pastor Roberts at the cemetery at St. Luke’s and placed what was left of Caitlin’s body in a quiet, peaceful and simple ceremony. It was immensely difficult to part with her, and say a final goodbye. I know it is only a “shell” and she is no longer with us, but the finality and permanency of the act again brought me to my knees. Treasure those you love, hug them tight and make sure they know…..how much they mean to you.
I have a story to tell you all.
It isn’t finished yet. I have a feeling, it will never be “finished”…
But, I’m writing a book about it anyway, and I’ll just have to find an ending point. It will take me some time to complete what I have started. So until I can, I have another story to share with you. I did not write it.
It seems fitting, however, as we begin to prepare for the events over the next several days.
The Brave Little Soul
By John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity.”
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you; Caitlin Presley.
God and the brave little soul shared a smile, and then embraced.
In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”
Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
It may be my own need to give Caitlin’s death purpose, but this story gives me comfort right now. In my heart I want to desperately believe it really is this beautiful a story my child was a part of.
With love, d
For anyone who is keeping track…it has rained every day this week. AND, there has been a rainbow every day this week.
There is a joke about Florida’s seasons. Florida has 2: a wet season and a dry season. The wet season runs from April-October, and the dry season runs from November-March. They are just that. It rains every day during the wet season and not at all during the dry season.
So imagine our surprise when God winked and threw us a couple rainbows and some rain in the last several days.
Sunday morning, as I woke next to Caitlin, on the make-shift bed we had relocated downstairs, I knew the day was going to be different. Although she begged for me to take her to church, I knew we would not get there and that she was failing us.
I will not weigh this post down with details and specifics, because death is not beautiful or glamorous as some have described it. I will tell you the beautiful part of this story however.
We held Caitlin in our arms, while family gathered around, and at 3:24 on Sunday afternoon Caitlin took one last breath and died.
We cried some more, and said goodbye. And then, as if God rolled out the carpet for her to travel to heaven, a rainbow appeared. That means, moments after each of her family members said goodbye it rained (for only a few minutes) AND produced a rainbow….in my heart I want to believe Caitlin took the hand of loved ones, and unafraid, she skipped up that rainbow and right into heaven with only one look back to wave and say, “It’s ok mama! I promise I’m not scared! I can skip again!”
Again, without details of the day, I will fast forward to several hours later. We let go of the shell that had once contained Caitlin’s incredible spirit. We kissed those uncharacteristeric chubby cheeks, and the no-longer crooked and droopy mouth, and we placed her body into the care of the funeral home.
As they drove away I started thru the house and out the back door to retrieve the other children from a friend’s house. As I got half way thru the backyard, the sky opened up, and it rained. I stood in the rain with a friend who was walking with me. Honestly, I think we were both paralyzed with shock. Turning our heads toward the sky in stunned silence, we put up our hands and shrugged our shoulders because words weren’t necessary. As our feet hit the back porch of our other friend’s house just a few yards away, the rain stopped.
We gathered children and sent them running thru the backyard for some dinner. Again as we reached the halfway mark in the joined backyards, it rained. It rained harder and harder until we reached the door of my back porch. It rained for 3 minutes and was done. Another wink? How can it be anything but a wink.
Then, finally, after a day of being surrounded by family and friends, and Jeff and I dealt with the tasks of funeral home and church service arrangements, we arrived home yesterday afternoon. We were greeted with a dozen excited and shouting adults and children. Apparently, while we were out “arranging”, at exactly 3:24, a rainbow, ever so faint and light, appeared in the backyard of our home.
God let Caitlin throw her own rainbow. She loved them so much. She thought they were beautiful. And in the last year, when everyone joined in and made it “hers” to own as a symbol of things so much bigger than she could ever know, she was thrilled.
So I’m going to believe, that God picked her up, and said, “Let’s send a message to mommy, daddy, and everyone left down on Earth crying for you. How could we let them know that you’re ok?” It wouldn’t take Caitlin long to reply, “Mama loves rainbows!” And with that, God held her hand, and together they threw a rainbow; a tiny, fading, almost invisible rainbow.
Rainbows and rain, during the “dry” season…..best.wink.yet.
with love from our broken hearts, d
We have made arrangements to have a celebration for Caitlin’s life.
Thursday November 15th we will have a visitation from 6-8pm.
Friday November 16th we will have a service at noon to celebrate Caitlin’s life, and all that it has meant. Following this service, we will have a reception (at the Live Oak Reserve Clubhouse). We gently (and respectfully) request that no black or navy blue be worn to her services. Caitlin was bright and loved her colors. So we ask that you choose to wear a color that our princess would have approved of.
Both events will take place at our church,
St. Luke’s Lutheran Church
2021 West State Road 426
Oviedo, Florida 32765
In our efforts to continue the battle against a horrible disease, we made preparations and donated Caitlin’s brain and spinal column to be used in Dr. Mark’s fight.
We have asked that in leiu of flowers, a donation be made to Caitlin’s treasured and beloved Dr. Mark and his continued efforts and research to find a cure for DIPG.
Checks can be made payable to: WCMC Department of Neurological Surgery
Mailed to: Dr. Mark Souweidane c/o Ms Ana Ignat
520 East 70th Street Box 99
New York, NY 10068
Dr. Mark has asked that if this is something you choose to participate in, that you please remember to note “In memory of Caitlin Downing” in the memo section of check. It is important to him, as I know that he loved our daughter too, and any donation made in Caitlin’s name is of significant meaning to him.
And finally, with fresh new tears, I ask you add a special little boy and his family to your prayers today. I have engaged with only a few families who find themselves in the same situation we have; fighting this nasty disease. One of the families that has held my heart tightly is Evan’s family (aka the CREW). It was a chance elevator meeting, that resulted in a connection made months later, and friendship formed. This morning Aimee and Tim had to say goodbye to Evan as he died. While I know their heartache and share their pain today, Aimee offered me some incredible words of comfort. You see, Evan and Caitlin are each one of many siblings. “Now Evan has a sister to hold his hand, and Caitlin has a brother, in heaven.” Aimee, I think they will play together in heaven, with each other and others who have died before them. They will finally be healed, and once again they will be able to skip and run, and jump and dance. So you know, Caitlin would have met him, held out her hand, and told him everything would be ok. He probably wouldn’t have needed the reassurance, because he was always up for an adventure, but her soothing ways would surface anyway. My love to you today, and every day from now until forever, because I know you will hurt that long too.
Wednesday we went to Disney. We escaped quickly from routine, and had some kind people “turn up the magic” for us. And by “turn up the magic”, I mean, we felt like we were the only people in a crowded park! It was such a beautiful day that we have declared November 7th an official Downing holiday: Disney Day. Jeff and I don’t celebrate or get caught up in the anniversary of sad days. In our hearts, we feel this isn’t the way to remember a person, or a time. So instead, we have chosen November 7th as a official day to celebrate our family, our love for our family, and ‘magic’ and memories of our children.
It is now, that I am learning the difficult game of balance. This isn’t just any balance though, this is balance in extreme ways.
Balance that includes telling an 8 and 9 year old their sister is going to heaven, and watching them crumble at moments because of the magnitude of this information and then rejoicing for silly jokes, a friend who wraps his arm around his buddy as he cries during a 3rd grade school musical because the hippos can’t crash the dance, a stuffed rose left anonymously on a grieving girl’s desk…..
Balance that includes making a phone call to hospice, inviting them into your home and signing a DNR on your 5 year old daughter. There is no greater pain up until now. And 20 minutes after hospice walks out your front door, and that same 5 year old tells you for the first time in more than a year that she is “really really mad at you!” and that’s when the doorbell rings and a friend shows up with a Christmas wreath in hand. It’s beautiful.
Then she proceeds to explain that the community Home Depot has donated an incredible amount of Christmas decorations for our yard….(I think you can now see my house from space.) and neighbors that come out of their homes to help set it all up, put it together and stake it down.
And a neighborhood that starts a movement to bring Christmas early…to put up all their lights and decorations, to make little Caitlin Downing enjoy her last few days with a smile, when they are difficult to come by lately.
Every time I fall to my knees in anguish, with an unbelievable ache in my heart, and I silently say, “how will I survive this pain?” I hear the thud from behind me, and feel the ground shake, as a community, both physical and virtual fall to their knees as well. And my gratitude for that support and love will never be expressed fully, because there simply aren’t any big enough words or actions to convey it. But it is the answer to my question…and to part of my prayers…
I will survive because of your tremendous, selfless and giving hearts.
I will survive because of your incredible and unconditional friendships.
I will survive, because you will make sure I’ve got my shoes on :)
(For those of you who have been reading for a while, you should know I came close to wearing them to bed with my pajamas tonight!)
But I didn’t….
With love and gratitude for all the unspeakable ways you are showing your support and love for my family, and my sweet Caitlin, d
I know you all want to know how she is doing. It is difficult to write, because I know the hurt you will each feel when I share this information. So if you would prefer not to know details, please stop reading now. Caitlin continues to deteriorate. Her speech is understandable only by a few people. She speaks quietly and with slurred words. She cannot walk more than a few steps, and usually needs to be carried. We have relocated a futon downstairs because stairs are impossible to manage, and she is terrified to venture to the upper level of the house. Her pain and discomfort continues to increase and so does her morphine dose. She insists on having me by her side at all times, even when she rests (because she doesn’t sleep well). This care, time and attention from me that she now requires has found me walking away from my phone and iPad for several hours at a time. I rarely see the computer anymore. And for this reason, I have gone hours without checking texts, and several days without seeing emails and Facebook. So please forgive me if I lack response to your incredible, thoughtful kind words and posts. When I do get to see them, I cry as I feel each embrace you share. They mean the world to me. But if I tell Caitlin,”just a second while I return this email” then I lose that many minutes with her. And I can’t lose any minutes with her right now, because in a few weeks, I will lose them all, forever. I know you understand, but I had to apologize anyway, and thank you again.
All the way home from the hospital today, I wondered and thought,”How will I say it?”
How will I tell you about our day and what we have learned about our daughter, our family and our future.
I got home and continued to ask myself over and over.
Then, it rained. Well, it didn’t just rain, it poured on my street; for exactly 3 minutes. It wasn’t even long enough to completely soak the driveway.
But it was long enough to produce my inspiration.
You can hardly see it. But as Caitlin and Campbell and I darted from the house in search of a rainbow, and turned around we saw this clearly and colorfully. In this picture you see half of the rainbow OVER OUR HOUSE. What you don’t see, because I was crying too hard, is the other half of the rainbow that fell to the ground on the other side of my house. My house was completely and perfectly centered underneath this rainbow.
What are the odds?
C’mon. You all know I don’t believe in odds anymore…
And I will admit something to you…I didn’t want to believe in God anymore. I still don’t want to, but I sure as heck still do. I’m mad at Him, but Pastor Roberts will help me sort thru that in time.
A long time ago, I wrote a post that spoke of rainbows. I explained that I believe rainbows are promises. BUT, I followed that statement with further explanantion that it may not be the promise we beg or bargain for, promise or plead for…
And tonight, this rainbow is certainly not the promise I have searched of for our daughter. But, we believe it is a perfectly coincidental promise that she will be taken care of and that she will be loved and she will be healed…but not by us.
The results of the MRI? Well, I can explain in medical terms first:
Significant progression of disease, mass shift, closing ventricle, morphine, comfort, initiate a call to hospice, so sorry, so sorry, so sorry….
What it means? Well, this is how I choose tonight to describe it:
that bastard tumor is growing at ridiculous speed, a few weeks left with our daughter, NO SUFFERING for Caitlin will be tolerated; but my husband will suffer and I can’t protect him, our other children are going to suffer and I can’t protect them, our parents and siblings will suffer and I can’t protect them, our friends will suffer and I can’t protect them, our community will suffer and I can’t protect them….so sorry, so sorry, so sorry….
Tonight I urge you to run thru the mud and get messy, go see Wreck it Ralph, put up a blow-up, not at all Martha Stewart, 6ft snowman in the front yard, eat dessert first, have a picnic on the futon, plan a trip to Disney, wear your pajamas and ignore the dishes…because it will make your children smile and be happy.
And please don’t say these words to your children if it can be helped,
“In a little bit”
“There isn’t time”
“Maybe another day”
Because I just got a full kick in the heart of “time” and all that it means, and it isn’t pretty.
And I’ll leave you with one more confession (my sister will cringe worst of all….)
I DIDN’T VOTE TODAY AND I DON’T CARE TONIGHT!!!!
with a truly broken heart, d
P.S. Thank you for the letters some of you have written. (See previous blog entry from Sept 17th?)
Others of you are avoiding me and my request. I am begging you to please write them, please send them, please help me to know she won’t die a life that no one will remember…..
I found my Christmas cookbook. It’s on top of my refrigerator. I wasn’t looking for it, mind you, but I found it anyway.
A week ago, I found myself seated in a smelly taxi with ripped vinyl seats and a dirty floor. It was a dreary day, with grey clouds filling the sky, and no sun shining. As we made our way from the east side of Manhattan to the west side, and eventually out to Newark airport, I realized autumn had descended on New York.
As we drove alongside the river, the bursts of color looked like they had been painted with an old paintbrush. The kind of brush that should be thrown away because the bristles simply don’t smooth down or stay together anymore. As a result, the painting this brush yields is typically ‘scratchy’ looking and does not have clean lines or solid definition.
The colors, however, were magnificent. Orange, both bright and burnt, yellow, dark red, and some brown wove between shades of green. The colors that undeniably accompany cooler weather, the opportunity to wear boots and sweaters, and children dressed up in costumes. The season that undoubtedly brings us apples and pumpkins, haystacks and scarecrows, and eventually, the smell of turkey with stuffing and mashed potatoes.
Growing up, in the northeast, autumn was my favorite season. I still love it, and all that it brings (holidays, football, cooler weather, the start of school), but it is certainly not as dramatic in Florida as it is in Pennsylvania and New York. Last week, though, the unsettling feeling that was beginning to form in my stomach found its route out and into my head and my heart.
I (admittedly and embarrassingly) love to decorate for the different seasons. While my friends will tease me that I rival Martha (Stewart) I am CERTAIN that I’m not that crazy. But, I do have red and blue bins that hold decorations for May-August that are filled with decorations patriotic in nature. Those bins are brought out when the pink bins containing Easter, St Patrick’s Day and spring decorations are put away. Recently, the blue and red containers were packed up and hauled to the attic to make way for the orange and black bins that contain Halloween and fall decorations. On one of my trips north, Courtney, Cole and Nana unloaded those bins and brought autumn into our home. Typically, right as Thanksgiving ends, we drag and lift and carry the red and green bins into the house to decorate for Christmas.
Uh-oh, Christmas decorations….
The last time I saw Christmas decorations we were in the final stages of packing them up and putting them back in their homes for the next 3 seasons. It became a frenzy of sorts; the effort to get them stowed away. You see, just as we were packing up the last of ‘Christmas’ I was watching my 4 year old trip, fall, and get diagnosed with an incurable brain tumor. As the last box was placed, I remember thinking,” Statistically we have less than a 30% chance she’ll be with us when we put these boxes away again.”
The Earth has almost made a complete revolution around the sun. Since putting those boxes away we lived through the bare, cold winter. The grey and chilly season with barren trees and gardens suited our moods then. Winter gave way to spring, as it does each year, and we watched as Caitlin’s symptoms and tumor seemed to disappear with winter. Again, our moods seemed nestled in the climate surrounding us. As buds formed on trees, and shouts of color and “life” came back to the outdoors, so did the hope in our hearts. Spring fell to summer, and it was hard to remember that the children splashing and swimming in the hot, humid summer sun weren’t all healthy. Our fears seemed to melt as quickly as the ice in freshly squeezed lemonade while we gave way to loose bedtimes and enjoyed the sand and surf of the beach.
School has been in swing now for many weeks. The air is cooler. The leaves of the trees are almost flashing with their brilliance. Soon those leaves will flutter quietly to the ground, one by one. Halloween is over now, and too soon, Thanksgiving will be here. Turkey day will be followed quickly by the green and red bins…
So, initially I thought, we just won’t get them out; Christmas decorations will stay away this year. It’s avoidance, true, but I’m not above avoidance if it’s necessary.
Instead, I’ve decided to decorate early. In fact,we are starting this weekend. (I know, I love the turkey’s day too, and I don’t like to rush him along, but we need some extra ‘Christmas magic’ right now.) And besides, I JUST realized, as we headed out the door to trick or treat, that the Christmas cookbook has been on the refrigerator, in a beautiful wrought iron cookbook stand, since last Christmas. It didn’t ever get put away. So I might as well just haul all the decorations back out.
Because Christmas will come, wether I decorate or not. And winter will descend upon us; and regardless of my home decor, spring will follow and summer after that, and of course, autumn would be the next one in the line up. The seasons won’t stop because the Earth wont stop revolving; even if Denise Downing doesn’t have the proper decorations. Life will still carry on; so the Downing family will carry on with it.
We will hope and pray and wish…
But we will balance our hopes with the reality that appears to be unfolding before us.
Our sweet girl is beginning to struggle. With all our hearts and souls we want to believe those struggles are related only to side effects of medications; chemotherapy, steroids, neurontin, etc.
We will find out with real proof on Tuesday, as we complete the routine MRI that has been scheduled for the last 7 weeks. Then, I will be able to explain more; more of her symptoms, more decisions we will be faced with and forced to make, more of the feelings in our hearts.
Until then, wrap your arms around each other. Love each other, be kind to each other and assert patience toward each other.
all my love tonight, d
I have cried a lot lately. I’ve been sad, and angry, and worried, and scared. So, I’ve cried to let go of some of that emotion.
Today, however, I cheered.
Because when you go to a cheer competition, you cheer.
Today Courtney and her Jr. PeeWee cheer team left it all on the mat at their cheer competition. They set out early this morning to take on all the Mid Florida cheer teams, along with the PeeWee, Jr. Midget and Midget cheer teams. They boarded buses together and traveled to the arena at 6am. Some of us who are dedicated (ok, obsessed) with cheer moved out and headed to the arena with the buses. It allowed us to save prime seats for other family members who come out a little later; closer to performance times.
Jeff arrived with Campbell, Caitlin and our mothers several hours after I had been saving seats with many other Husky parents. Caitlin climbed up in the seat next to me as the spotters working the performance floor took advantage of the 15 minute ‘break’
built into the morning performance schedule.
They pulled out a T-shirt launcher and began catapulting tightly wrapped t-shirts into the stands. They started on the half of the stadium where the performing cheerleaders sit with their teams and coaches. (Once at the stadium, cheer teams sit together in a separate part of the arena. Only team coaches are permitted here; and the girls don’t come out to the spectator side. I had said ‘goodbye’ to Courtney as she boarded the bus, knowing I won’t see her until Saturday morning when she wakes up and we are home from New York.)
After about a dozen shirts flew through the air into grabbing arms of several hundred screaming cheerleaders, the spotters turned their attention to the fans who were eager to jump up, wave their own arms and scream for a shirt to be hurled their way.
All those Huskies around us jumped to their feet to get one of the 10 or 12 shirts headed into many hundreds of parent’s waiting arms. I didn’t get up. Engrossed in a chat with my sweet girl, Caitlin and I stayed in our seats and I focused my attention on looking at her to see how she was fairing this morning, since I hadn’t seen her when I left at 5:30 with Courtney.
As the screams around me got louder, and the arms waved harder, I guessed the shirt launchers must be aimed our way. I realized I was correct when a rubber-banded white t-shirt made it past all those adult arms and (oh yes) plopped down on the floor in front of Caitlin’s seat. (I’m not kidding, or exaggerating.)
Wow, right? Ha! keep reading…. (if you’re a crier like me, go get the tissues….)
Of course, surrounded by our Hagerty family who has been a wall of support, everyone and everything froze and you could actually hear the collective gasp when those Huskies realized where that shirt they had all been reaching for actually landed. I started crying so quickly I almost couldn’t pick it up. I did, eventually, and unwound the rubber bands, shaking my head in disbelief the whole time.
I should back up just a minute, and explain to you that while the 4 oldest teams compete, the 2 younger teams (the Tiny Mites and Mitey Mites) perform a week prior (last week) in an exhibition with all the other Mid Florida tinies and mities. Caitlin cheers on the Tiny Mite team, but due to her decreased coordination and balance, and extended time in NY that kept her from practicing, I had no choice but to pull her from the opportunity to perform. I had considered taking her to watch, and cheer for her team; but she was too sad she couldn’t be on the floor and I didn’t push her to go.
When the shirt unrolled and I held it up, I started to shake. It was the 2012 Tiny Mite/Mitey Mite exhibition shirts they sold last week at the arena. It is the shirt I certainly would have bought for Caitlin had she been able to attend. There was another collective gasp, then a shout from several other ‘criers’ among the group, “OMG Denise! A wink!”
I think so too.
After Courtney performed we gathered ourselves, the little girls and headed toward the exit so we could begin our day of travel by heading to the airport. My mom took the girls to the restroom as Jeff and I gathered our collective thoughts.
It was Courtney, with one of her coaches, on our side of the stadium! I was so thrilled! I got to hug her again before leaving; and we got to tell her how proud we were of her and her team.
“Thanks Mom, but guess what!” She pulled her arms from behind her back. “Look what I caught! Look what it says! Where is Caitlin? I want to give it to her.”
If Jeff hadn’t quickly reached out and steadied me by grabbing my hand, my buckling knees would have sent me to the ground for certain.
It was the SAME SHIRT! I looked at Jeff, and back at Courtney; she was a little confused by our tears. We laughed helped her pull her shirt over her bow as we explained.
2 dozen flying shirts,
thousands of waving arms with grabbing hands,
not only do 2 of those shirts end up in the hands of my girls, but when you add in the significance of the print on the shirt itself, well, I’m going to have to say
back at ya God….thanks for that wink
(For those interested in results, Caitlin and I are cheering from NY tonight for all 4 Husky cheer teams tonight! For the second year in a row, each team placed first in their division! Watch out Southeast Regionals, here we come!)
with love, and a wink, d
I write this as Caitlin and I fly to New York to return to the hospital early tomorrow morning for another week of chemotherapy. She is tired, and is beginning to lose her hair. She has gained steroid weight, and the right side of her face has difficulty moving. (Sometimes she looks sad and uninterested, please don’t think this when you see her. She just can’t make her full Caitlin smile right now.)
Every parent of every child with DIPG hopes they will find a miracle. We are no exception. While our heads understand the facts and information of this diagnosis, our hearts feel we need to search some more. We certainly want to save our daughter, which is why we return this week for chemotherapy. It truly is difficult to plan ahead or to think through agendas that are not immediate.
But, the constant that remains in our lives is the love and support we continue to receive, and consider ourselves blessed to be enveloped in.
Thank you, to all of you near and far, for blessing us with each of you, and all that you continue to selflessly give.
Many of you have asked, via email, text or voice, “How is Caitlin? What comes next?”
I will tell you that after a tormenting week I am able to finally answer those questions, but not without some emotion.
We have consulted with professionals, reviewed research we have read dozens of times already, submerged ourselves in reports and medical records, and debated and discussed between ourselves. We have finally made a decision that has been agonizing to arrive at and agree upon.
The emotions wrapped up in this week start with this challenging choice, but end in a place far from questions and doubts that lead to resolution. This morning found me with a sweet 5 year old, who casually asked me if her bump is going to cause her “to have to go to heaven soon.” (For the record, this goes down as the most difficult 3 minutes of my life.) It continued downhill at the mall, where a young child pointed Caitlin out to the adult she was with as “that’s cheering for Caitlin, you know, the girl that’s going to die.” The day followed this pattern, but veered away from being ‘Caitlin-specific’ and changed courses slightly; venturing into other areas of life that should simply be off limits right now. I won’t unleash the feelings or the reasons here. Instead, I’ve written them all down to be included in the book I work at putting together.
That flood of feelings that need to be controlled are partially responsible for the harness I place on discussing the recent determination we have made for Caitlin. The other reason for reining in the reasons behind our decision is that I can’t find the words to explain or describe the emotional and medical components that have been added together like some kind of equation that “equalled” our choice.
Sunday Caitlin and I will return to New York for round 2 of chemotherapy. We will be home Friday evening. 2 weeks after we return home Caitlin will be scheduled for an MRI. Our hope is to find some reduction in the size of her tumor during this scan.
After this, we will be able to make our next choice.
It is a challenge to move from morning to evening and be certain of our plan for those simple 12 hours. We appear disorganized and spontaneous, when actually (and unfortunately), this is where we are forced to currently function. (Thank goodness for those who help us!)
I am forever, and always grateful for your love and support. Recently I have been slow (‘turtle-slow’) at responding to emails, texts and phone calls. Caitlin is with me all the time now. I take care of her at home when she doesn’t go to school, and I spend days with her at school when she feels well enough. (And honestly, I wouldn’t have it any other way. This is not a complaint, only a fact.) She is scared of the limitations and undependable way her body is responding right now. She is unsure of what will come next, and if she will be able to complete what she sets out to do. She hesitates to change rooms without me close by her side. This has led to a lack of response many times when you reach out to me. I assure you, I would love nothing more than to be able to talk, or text, or email. I apologize if this behavior reveals itself as rude and I ask for your forgiveness. We would certainly fall flat if not for the incredible ‘reaching out’ done by so many.
my love to each of you tonight,
with a gentle reminder to embrace your loved ones tightly, cherish them completely and don’t take any moments for granted…..d
I have spoken frequently of our community. I have often recognized the Hagerty Huskies Pop Warner Association, because of the ‘family’ they are to us.
Several weeks ago, I witnessed that Pop Warner family grow. It was a rival game against the Lake Howell Pop Warner teams. Entering their field, it was impossible to miss the florescent pink posters that exclaimed “Rooting for the Hawks~Cheering for Caitlin.” Further inside the gate, was a poster of a Hawks football helmet colliding with a Huskies football helmet. The words around the helmets said, “Head to head~ heart to heart.” Yes, the colliding helmets formed a heart. The Hawks honored our daughter and our family in many touching ways that day, and after; both as an organization and as individuals.
This past Saturday, the Huskies ventured the 40 minutes into Altamonte to the Lake Brantley fields. The Patriots were ready to take on the rival Huskies, and Hagerty was eager to oblige. But, again, among the chanting, chirping and colliding, came sentimental, and heartfelt expressions of community; all aimed toward little Caitlin Downing and her family. The Patriots kindness was demonstrated thru magnificent balloon releases by their cheerleaders at half time of each game, big cards signed by cheer girls and football guys, and shout outs for Caitlin.
Then, in true Huskies fashion, I was again shocked by….(don’t laugh) by the love. It seems a funny word to use when talking about football, but I would be willing to bet that you’ll agree by the time this post is over.
Take a boy, one who is not in the tallest or heaviest or most athletic in his grade. Give that child a good heart, a little motivation, and some football gear. Teach him how to get fired up, and love the game of football. Give him an older sister, and two younger sisters, and two supportive parents.
Saturday we found ourselves with a jumbled schedule. Courtney played the first (and EARLY game.) Caitlin played at 3:00, and Cole played the last game starting at 4:30.
As Cole’s game began, I sensed the attitude on the field was different. I could feel it, like a pulse or a beat; but I couldn’t define it. I had one eye on Caitlin and Campbell, in the stands with their grandparents. My other eye was (as it always is) looking through the lens of my camera, carefully watching all that was taking place on and off the field.
Then, in the 4th quarter, in slow motion, something incredible played out. A Huskies running back rushed toward the goal line, no defenders close by, and with 2 yards to go, he dropped, right down to his knees. I pulled my camera away from my face, certain he must be injured. I looked around, coaches SMILING, kids ALL FIRED UP, and my son running onto the field behind two of our toughest blockers. Huh? yards to go for a TD, and Cole was lining up….behind the quarterback. I could hardly hold the camera still as I realized what was about to take place. I could hear Jeff’s breathing turn to soft sobs, mimicking my own.
On the first play, I only heard my blood pumping through my ears with a roar. The second play I heard a different kind of roar. It was coming from behind me. It was the parents and fans in the bleachers behind us. I turned to confirm, and was correct in my initial interpretation. “COLE, COLE, COLE….” Finally, a third play found the boys and coaches on the field joining in with the fans behind them.
He didn’t get the touchdown.
I can hear you groan and sigh, but don’t yet, because this is where the story gets even better….
Cole ran off the field to a screaming, cheering, jumping team of 33 boys, 8-10 years old. They were so proud. They high-fived him. They told him how great he did. They told him they were proud of him. They picked him up.
As I picked myself up from my knees, I realized he was searching out Jeff and I. He collapsed into our arms, crying. “I’m so sorry I didn’t get a touchdown!” We cried with him as we told him it didn’t matter, and that we were so proud of him.
The hugs and thanks were over flowing as Jeff and I made our way to each coach. Amazing comments from each coach still ring in my ears, “This is what it’s all about.” “He practiced hard on those plays this week.” “Sorry we couldn’t get him in the end zone.”
And finally, a seasoned coach to multiple sports, who gave a hug and no reply to my spoken sentiments. It took me a foolish moment to realize, behind his sunglasses he was crying too. He held me tight for a moment so I didn’t walk away, and then he spoke. “No, thank YOU, for all you’ve given to all of us. THAT was one of the most incredible things I’ve ever seen in kid’s sports.”
Dare I say, it was one of the most incredible things I’ve ever seen too.
It was a team that had gelled, and glued and come together. It was a team, so excited for one of its own. It was a team, that ALL dropped to their knees with a clear path to the goal line, and only 2 yards to go. They did it, all for one little boy. I am humbled, and so honored by those 33 young men.
And I am blessed by the 8 men and 2 women I call friends, who have coached these boys in the sport of football, and in the art of humanity.
Cole wouldn’t leave the parking lot after the game until he first made Jeff drive around and find the 2 boys responsible for blocking him that afternoon. He wanted to say goodbye to them, and thank them.
As I took a day or so to pull my emotions and my words together before I could put this all down into an entry, something else took place. Something that the parents of 33 young boys were responsible for. Coaches may coach (and the Huskies MM coaches are awesome), but coaches can only coach if parents first parent. A chain of emails took place late last night and into today. They started with a team mom and head coach and quickly (and uncharacteristically) continued with responses from multiple parents, explaining their own emotions and excitement, and that of their sons because “Cole got to run the ball.”
But we won our game against Lake Brantley when we weren’t expected to…..”that didn’t matter,” as one parent stated, “because Cole got to run the ball.”
I thanked coaches and kids, but my deepest thanks also goes out to each of the Mitey Mite parents, for all your grace and selflessness. with ALL my love, d
Our mornings are typically hectic.
That may be an understatement.
Typically, our mornings are absolutely chaotic.
Aside from my morning run, where I am able to find quiet and peace, and be alone with loud music and my own thoughts, from 6:20 until 8:10 every morning is sheer pandemonium in the Downing household. I know too many of you are nodding your heads right now.
It follows this pattern every morning…
“Wake up guys, time to get ready for school.” “I’m hot/cold/tired/hungry/sleepy/cranky…”
“What do you want for breakfast?’ “Eggs and bacon” (yeah, right!) “It’s cereal or toast.”
“Who’s buying lunch?” “What’s for lunch?” (Then I make at least 2 lunches.)
Hair goes into braids or pony tails, ice and water into bottles, SIGNED planners into backpacks…..
Then we take care of whatever it is that someone has inevitably forgotten to do until we get ready to leave.
Next we argue over “appropriate” shoe-wear for school.
Finally, we get into the car with fights over who gets to ‘pick the first song.’
I could come home and fall asleep every morning at 8:15, right after everyone has gotten out of my car with “I love you” and “Can I buy a cookie/ice cream today at lunch?”
Today, around 7:45am my cell phone rang. It’s rare that the ringer is ever even on my phone at this time of the morning….even rarer that anyone would call (because most of the people I know are in the same frantic frenzy as I am.)
Courtney found it, Jeff answered it.
It was, the infamous, and ever-loved, Dr. Mark Souweidane.
I can only hear Jeff’s side of the conversation. He hangs up, looks up and says, “Denise….”
Remember where I am in our morning routine…
Some of you know this ending already.
After lengthy conversations and tearful explanations between us and Caitlin’s treatment team, we were almost guaranteed a denial when her team at Sloan-Kettering submitted her paperwork for request to retreat surgically. Today, we were told the team has received approval for “single patient use” to retreat under a “compassionate care” status. (The adjectives mean nothing to me…they said “YES!!!”)
Tonight, as I sat with my mother and brother at the kitchen table, my phone on silent, one of the few phone calls I made today impacted the knowledge of so many loved ones.
Many of you found out via Facebook about this approval.
I called to thank the Cristian Rivera Foundation late this morning. Cristian’s parents had to say goodbye to him 4 years ago. They took their anguish and their pain, and turned it into to something amazing and beautiful. They pledged to help find a cure for DIPG. In doing this, they have funded research (and Dr. Mark Souweidane specifically). This support and funding has been responsible for allowing Caitlin many of the treatment opportunities she has had so far. I am so grateful. John Rivera could hardly contain his excitement, or his tears. “We are going to make history. We are going to SAVE CAITLIN!” I can’t imagine the selfless love that exists in someone’s heart to be able to make this statement after suffering the loss of his own son to this disease. Thank you to John, and Jenelle, for sharing your son, and your heartache. Thank you to the Cristian Rivera Foundation for your dedication to curing DIPG. Thank you to each one of you, for praying, wishing, hoping and believing.
Tonight, a friend asked, “What can I do?”
I hesitated. “WHAT?!” she said.
“Keep praying, and hoping, and wishing.”
I have not shared this news yet for a very selfish reason. Many details are yet to be discussed and decided; some remain in control of Jeff and I, and some are far beyond our reach. (Specifically, her potential surgery date may pose a challenge to meet, while maintaining a “healthy-enough” patient in Caitlin.)
Caitlin continues to decline, ever so slightly, every day. We are very sad. I’m certain this is not a surprise to you if you have seen the pictures posted to the Facebook Cheering for Caitlin page.
Caitlin’s attitude, however, is a different story. Yesterday, her teacher pulled me aside during one of the days I brought her to school and stayed nearby all day.
“Her pictures look like she’s fading away. It made me so sad to see them.” She said, through genuine heartfelt and loving tears.” But it only takes a few moments to hear her laugh, or listen to her talk. And you realize, that even though she may look a little different right now, NOTHING has stolen the sweet and caring and loving Caitlin that we all know and love.”
She paused, took a deep breath and continued, “ I love knowing she is still the same Caitlin. She hasn’t changed a bit.”
And she hasn’t. In true Caitlin fashion, I discussed (briefly) the possibility of “Dr. Mark being able to help her bump again.”
She looked at me with question, wonder, and (maybe) some anger. She hesitated, thought and spoke.
“Can you at least get him to go to hair cutting class before he does my brain surgery, so THIS time he doesn’t do such a bad job shaving my head?”
I giggle as I write this.
“Sure Caitlin, I’ll tell your Dr. Mark, one of the most renowned pediatric neurosurgeons in the world, that he should attend hair cutting class prior to your brain surgery.”
“OK, then I’ll do it; whatever you want. Now, will you rub my back so I can fall asleep please?”
all my love, d