Monday, January 16, 2012


This is something I have been meaning to write about for a while, but I haven't been able to get my words around it clearly.  It is such a deep chasm that I often lose myself in it as I try to explain it.  It catches me almost daily, just little things, sometimes much bigger, but often the most unsuspecting thing brings it on.

We began the battle for Scarlett's life a year ago, and it has been difficult, to say the least.  One year later, I am still grieving.  I wake up every day to her beautiful smile and her sweet little voice, but I am still grieving inside.  It might be difficult for others to understand, but it is something very real for me. 

Sometime early in this journey, during one of the many long and arduous hospital stays, our hospital social worker brought up the idea of our grieving.  It didn't sound right - we usually think of grieving death, and Scarlett was very much still with us.  But then she explained - we were grieving the loss of the child we had dreamed of.  The one we had hoped for and imagined all those years before we had her, while I was pregnant and for those first two unblemished months.  We had to grieve the loss of that imaginary child, of the dreams we held for that child.

I know it sounds like we had to give up on her, but it was quite the opposite.  We had to give up the illusion and accept her, with all the scars, delays and complications to fully appreciate the triumphs and celebrate her.  We had to let go of the fantasy child so that we could fully embrace the one in front of us.  Having a child diagnosed with any kind of medical condition or special needs is difficult, and while it does not compare to the death of a child, it still represents a deep loss. While the child is still present to be held, every day is a reminder of an unknown future, continued challenges and pain, and that can bring new waves of grief.

Unfortunately, I have been witness to a lot of grieving lately, and I have seen a whole range of experiences and ways that people handle it.  Some grieve very publicly, and want others to join in to help ease the pain; others want to hide and quietly process on their own.  I have done both, though I know it seems like this blog has been an all-access pass to our journey.  I am working my way through the infamous stages of grief, and while I can pinpoint some events in each category, I don't find that they come in a definitive order.

Denial was a short-lived stage, as we were put face-to-face with the tumor that was overtaking her brain on the first day; I remember a fleeting thought of "Maybe they have the wrong scans!" until I blinked again and could recognizer Scarlett's profile, with her tiny nose and round chin, in the MRI image.  

Anger comes and goes.  Unfortunately, there is no person or thing to be angry at, so it had been a fruitless emotion.  The anger comes in more in the lack of options, the lack of information and the overwhelming number of kids I have met who are also battling this. 

Doctors don't bargain much, but I tried my best with God.  We asked Him to make this stop, to take this pain away from our innocent child.  While some may argue that God brought us to the surgeon who removed the tumor, I have a hard time giving Him credit for that.  Ultimately, I don't feel I had much to bargain with.

Depression ebbs and flows, like the tides.  There are good days, where I feel like she is making such great progress and that all of this will be a distant memory that we will tell her about.  Other days it sits around me like a thick, soupy fog that I can't see my way through.  Luckily, I am pretty good at identifying the bad days and finding ways to combat it, and I almost always have someone or something that can distract me.

We are, and may always be, learning acceptance.  We accept that Scarlett will not fit any kind of development schedule or curve.  We accept that she will never hear perfectly.  We accept that Scarlett will always need some medical interventions, monitoring and even further treatment down the road.  I am learning to accept the way people look at her, like they are sad for her, and just a little scared of what might happen if she sneezes too hard.  

I will, however, never be able to accept that this happened to her.  She did not deserve it.  Honestly, I don't think I did either.  Nevertheless, I am learning to accept that it was always going to be this way.  She was always going to be our daughter, was always going to be a Scarlett, and was always going to be born with brain cancer.  There was never a "before", only Scarlett the way she was meant to be.


Pippa's Auntie said...

I have rarely commented, although I've been reading since the beginning of your journey. This post, however, brought me to tears with it's stark truth about the grieving every parent that has a special needs or sick child has to go through. Your words are beautiful, and so very accurate. Frankly, I think you would be hard put to find one reader of your blog who thinks that Scarlett OR you deserve this, and I'm angry for you. You are not alone in that anger, and many of us will never meet you or Scarlett. As always, thank you so much for sharing your Scarlett with us.

KatStrat said...

This was beautiful to read. I am sending love up from Anaheim!

Jeff and Karen Doherty said...

I've been following you from almost the beginning of your journey with Scarlett. Our son has spina bifida. We didn't know until he was born. Thank you for your blog. Your words and updates have helped me work through my feelings. Your post on grief today is spot on. We do grieve the fantasy child we thought we'd have. We love our little man and wouldn't trade him for another or another experience. And, there is grief involved in that process. Thank you for stating this so eloquently.

Anonymous said...

Your grief is so understandable and it is so healthy to write about it. Hopefully that helps get some of those feelings out. You continue to be such an inspiration to me and to all of the thousand people who follow your blog.

Ashley said...

This post is so raw. I identify with it in so many ways, grieving what you thought your child's life would be is hard. I hope you are able to make peace with this. It isn't easy, I still grieve for my daughter a year and a half later and she is healthy now. You are so right people who haven't experienced a sick child, or a child diagnosed with something can't quite grasp the idea of grieving a child that is still here. ((hugs))

BabyWeightMyFatAss said...

I have a daughter with Autism and I've written about the topic before because it's almost taboo in special needs circles to say it out aloud. I think dealing with it helps you see so many other things and is healthy. here it is:

Robin said...

Praying for your family always!

lovejoy_31 said...

I truly is hard for others who haven't experience sickness to understand and it isn't their fault. My mom was diagnosed, battled and lost her fight to GBM within four months. The entire four months, I cried knowing that more than likely we were going to lose her and then you still grieve when it happens. I'm probably rambling and I know the loss of a mother isn't the same as the loss of a child or even the grief that loss of who you expected your child to be and your life to be, but I do understand the grief. For me it was such the anticipatory grief and because my mom's battle was so short it was four months or pure HELL!!!! Just know that there are some of us out there who are with you in your grief.

April said...

Beautifully stated. Please remember through all this to take care of yourself as well. If your times of sadness or depression last for very long, talk to your doctor about it. Try to spend some time each day doing something for yourself; go for a walk, take a long bath with fizzy bath salts and lots of candles, do something you enjoy. Let Chris take her to some of her appointments on his own and take that time to get a pedicure. You love your daughter, we all know it. It's not selfish for you to want to do some things for yourself. When you feel better, you will be better able to care for Scarlett.

The Gilje Crew said...

I've been following your blog and your wonderful updates on Scarlett. I cheer on a family I have never met and likely never will. I commend you for finding the courage to speak out on your true feelings. It seems like it's taboo to say you grieve for the child you dreamed of raising, but it's a truly appropriate and valid feeling. I can only imagine the pain you go through on a daily basis.

Haley said...

This post as others have already commented brought me to tears as well. The hand your family has been dealt is a hard hand, but you are amazing and don't forget that. I would have crumbled long before, had I been in the same position. Good things are in you and your little girl's future!!

Wendy Juzwiak said...

I have been following your story from the beginning and don't think I have ever posted. I just wanted to say that you expressed all of my feelings in your post today. You and I are a lot alike, although we are fighting different battles. My "umblemished" time came to an end when my oldest son was 3.5 years old. We had this perfect child. He hit every milestone on time, he was the perfectly happy baby, always smiling and just a beautiful boy to look at. We got tons of compliments. When he was 3.5, he was diagnosed with Duchenne Muscular Dystrophy. This will shorten his life to teens/early 20s. It is a hard pill to swallow and we have definitely hit all the stages of grief and still do. I hated seeing what you and your family went through. Hated that such a beautiful little girl and her loving family also has to suffer. I am sorry that we both face these hurdles. I just wanted you to know that you are not alone!


Laura Fusco said...

Just thinking about you and wanting you to know that, although I know you wanted to just be a regular mom of a regular kid, not somebody's inspiration - you ARE an inspiration, you GET to be that precious baby's mom and you are doing a beautiful, generous, wonderful thing for her world, and for ours -- opening up our minds, educating us, and keeping it real. Thank you for sharing your grief, telling your story and making a lot of peoples' lives better in the process.

Bernice said...

Wow, perhaps you don't know this...perhaps you'll never know, but you, your husband and Scarlett have changed many lives. All of you are part of our lives, the ones that read this blog are affected and emotionally challenged by your words. And that is a big influence in the world of others. I'm certain, because I've personally changed my view of life, of what's precious and important because of you.

Thanks for letting us take part of your journey through this experience.

Mrs.Andrews-Next Adventure Travel Co said...

this is another reason why I admire you. You are honest. Honest about not being ok with all that happened to Scarlett or you all. It is not fair, and while I wish you had never had to go through this I am grateful for all the wonder and good that has come of it. The comfort and inspiration you have given other parents facing these types of trials. The eye opening to those who have never faced it. The license to love unconditionally and MEAN IT. I am proud of you. Proud of her, Proud of Chris. You have taken what could be a wallowing in grief situation and instead turned it into life. Turned it into joy at small miracles, grief when you realize the "typical" will not be, and Hope. Hope that she does indeed have a good future (and I for one fully believe that other than hearing she will make it to fully healthy and this will be a heck of a story to tell her)and that you WILL get through it all.

Look at all you have gone through. There is more to come, but if you can survive the last year, you can do anything my dear. anything. and so can Scarlett. I expect to see pics of her prom date and her up here in 15 years!

my3boys said...


I have been following Scarlett's story since I saw her on Journey4ACure. She is a beautiful little girl and I'm glad to have "met" her.

I just read your post "Grief" and wanted to thank you for being so open and honest. My son, Tyler, was diagnosed with a brain tumor at the age of 6. He's now 8 and the tumor is stable. I relate so much to what you said in your blog. I have never thought of the emotions I feel as being grief, but you are absolutely right. I DO grieve. I grieve for the healthy, whole baby that I had and for the healthy boy I thought he was going to be. I grieve for the loss of our image of what his childhood was going to be like. At the age of 8 I thought we'd being going to baseball practices during the week and games on weekends. Instead we go to doctor's appointments and therapy. So we make the most of these trips and have come to enjoy the time we have to talk and bond as we drive back and forth. We make those days as fun as we can. As I have slowly let go of my image of what his childhood "should" be like I have come to truly appreciate what a blessing from God he is and how he is still my perfect little boy.

As time passes I realize my grief is still there but it is buried deep. Most days are now normal days. A new normal, but normal. At times the grief comes to the surface with the slightly nudge. As he smiles at a baby I wonder if he'll ever have his own children. When I see other kids running around playing sports I wonder if he will ever have the energy to get out there and play with them. I wonder if the tumor will remain stable or will it rear it's ugly head again. Every day has new worries and concerns. But it also has new miracles and things to be thankful for.

Best wishes to You, Scarlett and your family.