what i would have told myself

What is the deal with anniversaries?  We are wired in such a time-oriented way it almost drives me crazy at this point.  In our situation–fortunately or unfortunately–it feels like anniversary season.  If I could will the whole thing away I would, but it doesn’t work like that.  There are enough days that are hard just out of the blue that the whole anticipation of anniversaries seems maddening.  The truth is, the whole month of June has felt yucky and difficult and created a fair amount of tension in the house in its underlying way.  June was terrible last year.  I’m not focused on July 5, as we are already at the one year mark in many ways.  The days that Reece was back in the hospital last June were heartbreaking.  He was in such rough shape and yet so willingly did all we asked.  June 18 was a hard day realizing that it is the day Reece coded in the hospital and his body gave out.  Only moments of difference in timing on the doctors’ part and we would have had June 18 as his official day he passed.  The two and a half weeks between those two dates last year were full of tense, desperate decisions and emotional, grief-stricken mess.  I pray in my heart that Reece’s experience during that time period was much more peaceful.  July 5 is one day where as hard as it was, there was also relief.  It marked the end of suffering for Reece and the beginning of something so miraculous I can’t express the joy I feel for him and his achievement.  I’ve come to realize that those two weeks in the PICU were for us as his parents to come to terms with reality and really probably not for him at all.  He just had to be patient with us.  By the time we get to July 5 this year, there might actually be some relief as well.  I’ve been wrong about this stuff before, so we’ll have to wait and see.

We’ve had some people ask us and other family members how we feel coming up to the one year mark.  Time doesn’t really extend to this situation.  It just is.  My life feels divided into three parts: before Reece, with Reece, after Reece passed.  The days have been short; the year has been long.  It doesn’t feel related to time, probably because we have no break from it.  For most people, Reece probably pops into their minds every so often, and for us, it is the reverse.  It’s rare if he isn’t on our minds.

As I was readying myself for the day a few weeks back, I thought, “What would I tell myself a year ago if I could talk to that woman?”  Initially, I came up dry.  I’m not any sort of expert in anything we went through or continue to go through, but grief is so unpredictable.  What could I have possibly told myself about this year when I already expected it would be unpredictable?  It seems that I was as prepared as I possibly could have been.  Additionally, we didn’t exactly go into the grief process naïve.  In many ways, it was shocking that Reece passed away (I believe it is always shocking to lose a child–whether the child is terminally ill or passes away in a sudden accident.  It must feel shocking to most people.), but we had been through enough “stuff” that–again, either fortunately or unfortunately–we had developed coping mechanisms and were prepared in some way to go through this.  Truth be told, one year of intense grief is probably not enough time to gain many learnings…it is still too fresh.  But that morning, in my stubborn refusal to examine the topic further, I told myself there is nothing I would say to myself a year earlier to better prepare me for what I was going to walk into.

Over the last couple of weeks, I’ve realized that this isn’t entirely accurate.  It’s true–grief is unpredictable and follows no pattern.  Most people will tell you that.  I feel grossly inadequate to tell anyone how to prepare for grief.  You can’t prepare for it; you just have to live through it.  However, I think what I would tell myself is that my love for Reece is not the same thing as my grief for Reece.  It has taken me the entire year to come to this conclusion.  I have been stuck in traps that made me feel like if I somehow wasn’t feeling sadness over him in regard to his passing, that it meant I somehow didn’t care.  It’s a lie that I bought into early on, in the doldrums of this past year.   It just isn’t true.  My sadness and mourning is in regard to not having him with me.  But loving him is totally different–I loved him here and I love him now.  The problem with not differentiating the two is that thinking they are same thing prevents oneself from living life.  I recently was reading up on the life of the poet, John Keats.  He passed away in his mid-twenties from Tuberculosis and shortly before his death he said,  “I have an habitual feeling of my real life having past, and that I am leading a posthumous existence.”  (See www.Wikipedia.org/wiki/john_keats, May 30, 2013 )  When I read this it spoke to me about how life feels under the oppression of constant grief.  It leaves no room for active living.  When one believes grief is actually love, grief is never allowed to leave and so you know you are here, but it doesn’t feel like life is being lived.  It’s been a long process to understand this, but I feel it is key in my understanding where grief fits into the bigger picture of life.  Grief isn’t Reece and it isn’t love.  Grief is grief.  It has its own separate place in life.  Since separating the two in my mind, I have been better able to appreciate and experience the depth and breadth of my love for Reece and how it continues to grow and evolve, even in his physical absence.

The other thing I’d tell myself is that I should expect grief to be a solitary experience in my life.  Terry is the closest person to having a shared experience in life and yet he and I often share similar feelings, but at different times and manifesting our emotions and reactions in very different ways.  There are no partners in grief.  The only solace I have found is through seeking the Truth.  God is the only place where I can take my multitude of painful memories and find relief from them.  I don’t mean to discount people I love and who love us and support us.  That support is important, too.  But no one can walk you through it and understand it other than God Himself.  I’ve had many people comment to me over the last year about Terry and my strength in faith–how strong and faith-filled we have been.  I appreciate those thoughts, but find the statements generally confusing and misguided.  The reality for me is, it took such an extreme event for me to get to some of these places of faith and such a sorrowful place without much hope otherwise, that it highlights how much I truly have lacked faith in other areas of my life and how much I have yet to grow and actually do something with it all.  I still have much to learn.  I am astounded by people who have a deep faith without such extreme trial.  My faith has grown, yes, but it has only taken such dramatic leaps after being trapped at a dead-end.  It’s certainly not my own doing, but should be rightly credited to the Lord.  Only after facing such extreme trial have I been able to begin to grasp the breadth and depth of gifts like hope, faith, and love; hope beyond the things I desire to have and beyond the constraints of my human mind and expectations, faith greater than the gratitude I feel when things go the way I want them to go, and love that infiltrates every hard place in life and every crack in between.  The entire experience has left me yearning for much more than this life has to offer.

One thing that I have been struggling with immensely this year and especially this past month is not being a perfect mom for Reece.  I never entered parenting with the expectation of perfection.  Yet I find myself often in the lie and trap that if I could go back, I would give him everything his heart desired and do nothing but dote on him constantly.  Yet I know, as it plays out every day in my home, I could not possibly be perfect for him.  Yes, that is the lie–that I could have somehow been God to him–our only perfect Parent.  Still, the memories of my own limitations, especially last year when he was in our home, have haunted me.  I wish I had had more energy after giving birth.  With Scarlett born, I was the parent up with her in the night and Terry was the parent up with Reece.  Reece wanted me to be with him and I just couldn’t do it, because I was nursing Scarlett and just trying to be rested enough to deal with the demands he had during the day with clinic and home care.  As I have stated–it was a mess.  All the painful memories of watching him endure physical therapy and the tears he shed–and it was very difficult for him to cry actual tears after chemotherapy–but the tears over us making him do things that he was so tired out from doing–procedures, pokes, medicines…even forcing him to play just to rebuild his strength.  Most of the time it is his lack of protesting and his willingness that break my heart even further.  I would never have handled it with such bravery.  He had every right to be upset with things, but was mostly willing and calm and I just want to scream out on his behalf.  Had I only known that his body was actually shutting down I would have curled up right along with him in his blankets and spent those last days just snuggling with him.  Yes, there are many rabbit trails to go down and it has been torture.  And yet I still come back to God being sovereign.  He knew and He was perfect for Reece.  If only I could understand it here in an effort to feel relief and endure these years without him.  I’ve said it before and I’ll say it again–Reece deserved to be healed to Heaven and to be with the Lord.  I find solace in knowing that he knows now why all of that happened and that we did those things in an effort to help him, not harm him.

Last week, these very thoughts washed over me one evening as Terry and I were getting Britta ready for bed.  I got lost in them and found myself weepy and stuck in that place for a while.  The next day I attended bible study.  I’m doing Beth Moore’s Deuteronomy study on the Law of Love.  During her lecture she said something and I know it was meant for me to hear that morning.  She said (and I’m paraphrasing a bit) that the key to being a successful mother… “is not a list of 45 things, it’s one thing: love the Lord your God with all your heart, soul, and strength.” (Deuteronomy 6:5)  I love that redirect I received.  I don’t need to be a perfect mom, but in order to succeed, I need to love God, because that is the foundation for everything else.  Perhaps some moms can do it without God; try as I might, I know that I fall short.  It was soothing to hear and felt as though it was permission to begin to let go of the oppressive lie that I somehow could have done so much better.  I know I did my best.  And like I used to tell Reece, “Your best is good enough, Bud.”

I could go on, but the last thing I’m going to mention is about the blog.  So often I stumble upon blogs that cover fun topics like cooking or photography and think about how enjoyable it must be to write about such topics.  I suppose I could find something else to write about; something that I’m less passionate about, but that feels good to everyone when they read it.  Truthfully, that isn’t my calling.  I’m not sure that blogging, in general, is my calling.  When I was updating people on Reece, there were some posts in the middle where I revealed my personal feelings.  I didn’t think twice about it, because there was too much going on for me to care what others thought–I was numb to the judgment of others.  As the year has gone on and I’ve written this blog that contains my feelings and mental processing, I have felt vulnerable at times to share things.  After all, I could choose to never write another post.  No one demands that I write anything down.  Nevertheless, I have felt that even though my posts are sporadic, there is purpose for me in writing them.  If nothing else, there is purpose in keeping myself open and fresh with being honest about our life circumstances, my faith and how they both play out in my life.  I really can’t function in life without the component of faith.  Perhaps the reason I’ve needed to keep writing is to keep me ready to move on to another writing project or perhaps I’ll feel it needs to just come to an end if I wake up one day and it feels right.  I think if I could go back to a year from now, I’d tell myself to not feel apologetic over the blog–that it’s about a heavy topic.  It’s my own self consciousness creeping in–perhaps a sign of leveling off from crisis-mode.  After all, this is neither a ministry for me, nor a hobby.  It’s my life.

I’ve been privy to various people’s life circumstances this year.  Some people I know and others I do not.  People have sought me out for various reasons, usually related to health crises, as they know I can on some level relate.  The only thing I can think to share to anyone, regardless of circumstance is this–the Lord is near.  It sounds so tame when you think about it.  But upon further contemplation, it is one of the most tangibly powerful facts I have come to appreciate this year.  It is referenced all over the Bible and recently has been something I have meditated on in the following verses:

“‘Be strong, all you people of the land,’ declares the Lord, ‘and work.  For I am with you,’ declares the Lord Almighty.  ‘This is what I covenanted with you when you came out of Egypt.  And my Spirit remains among you.  Do not fear.'”  (Haggai 2:4b-5)

happy sixth birthday, reecie!

Today is Reece’s sixth birthday!  One might think that this must be a sad day for us, but really I don’t feel that way about the day in general.  Certainly, we miss him (and have pangs of sadness) and it isn’t easy to not have him here.  It is strange to know that the weekend would have been entirely different had he been here.  But this is a great day in our lives!  I want us to think of it that way and I want our other children to remember it that way; it is Reece’s birthday and I want to look forward to the day versus dreading it.  There is no way to anticipate how one will feel on a day like today, but I can tell you that if nothing else, I feel blessed.  I’m blessed to know Reece, to be his mom, to continue to learn life lessons from his time here, to know in a deeply settled way that he is fully healed and more alive than ever, and to have the assurance that I will see him again.  Some March 24 in the future, I will celebrate with him again, in person.  Until then, we will do our best on this day to honor his life that he lived here and also to celebrate the life that he lives in Heaven. 

Here are some fun pics to celebrate Reece:

Speaking of honoring Reece, we have some clarity on how we feel we should do so.  I read two great articles this week.  I highly recommend you read them–if for nothing else than to understand the background to my post today.  One article was posted on the Children’s Cancer Research Fund page and can be found here.  Written by the mom of a childhood cancer survivor, the article briefly touches on the thought that while her child is disease-free right now, she will never consider him cured.   This is something that Terry and I have discussed at length since Reece passed away.  It took me a long time to understand and accept that Reece probably never would have been “cured” from his disease.  MDS is an insidious, pre-cancerous disease with a high relapse rate.  As time progressed during his transplant, we came to realize that the doctors had a heightened concern for relapse due to his MDS diagnosis, thus begging the need for the study Reece participated in that looks at the relapse rate of high-risk pediatric cancer between one-cord and two-cord stem cell transplants.  We both discovered after Reece passed away that neither of us truly believed he would live a long life, well into adulthood.  After all, one is considered a “long-term survivor” after five years post-transplant.  That puts Reece just shy of 10 years old–10 still seems like a shortened life to me.  I remember the first meeting we had at Children’s Hospital when the hematologist first told us he suspected MDS was his diagnosis.  My immediate responses were something like, “Can we treat it?” and “Can he go on to live a full and healthy life?”  The answers were, “Only with BMT can it be treated,” and a very hesitant “yes” to living a long life.  I now understand the hesitancy.  I was so naive to what we were about to walk into–the doctor’s approach to our questions was appropriate.  He was hesitant because of the risks associated with transplant, including the many possible complications, he was hesitant because of the long-term effects to the quality of the life he may end up leading, and he was hesitant because transplants don’t always work–the disease can come back or the new blood may not function at all.  It is no easy task to switch your blood with some else’s.  Aside from the transplant, consider that all of these routine things that we fight every day–colds, influenza, chicken pox, etc–never really leave your system.  These invaders don’t go away, rather our bodies learn how to deal with them and keep them at bay.  I’m convinced it is the same with cancers.  After all, we all have defective cells in our body–regular cells that go awry.  It is a matter of them getting out of control when they become a problem and are considered cancer.  Reece’s bone marrow was, at one point, totally normal.  But eventually, the cells with monosomy 7 took over–thus the MDS diagnosis.  My point is, we all face life-threatening diseases every day.  We don’t think of them that way, because of our handy-dandy immune systems (that are actually pretty badass when you consider what they do).  But–at some point–we will physically be overpowered by something.  In reading this article, it was refreshing to hear another parent–a parent whose child is disease-free for now–discuss this openly.  She also discusses the complications that have come along with survivorship and references a second article that is longer and more robust in details.  To read the second article, click here.

This second article really hit home on many topics for me.  It summarized a lot of the concerns that we had to grapple with throughout our journey with Reece’s illness.  These concerns include childhood cancer survivors having a significant increase in likelihood for other cancers later in life, becoming your child’s advocate in such an intense and confusing subject matter, long-term side effects (like infertility and problems with cognitive functioning), and the reality that childhood cancers lack much research in many of these areas.  She also refreshingly discusses the obvious topic that no one wants to bring up–that even with cancers that have high rates of survival, there are still children who will not survive.  An 80% survival rate sounds encouraging (for lack of a better term) until you find yourself or your child in the other 20%.  And, when it is your own child, 20%–even 5%–sounds like a big number. 

One of the biggest takeaways that this article highlights is that childhood cancer is not the same as adult cancer, just occurring in younger people.  If you think about it, years of abuse to our bodies and years of abnormalities in bodies lend itself to higher rates of cancer in adults.  What about children–even babies in utero–who deal with this?  It’s not the same disease as when it is found in adults and often it behaves differently.  AND–it is a quality of life issue for a child; these types of treatments will greatly impact their entire lives.  It is an enormously heavy reality to think of when it is your own child and you are considering how to treat them and give them the best possible outcome for a healthy life.

Like most people, before we went through Reece’s ordeal, I assumed that there was a lot of research out there on childhood cancer.  The reality is, there is not as much as you’d think.  If you consider how rare childhood cancer is–some more than others–you realize that conducting studies is quite difficult from a funding perspective and from a participant pool perspective.  The study Reece was in was a five-year study and there was a very small pool of kids from across the nation participating.  Many of the decisions we made about Reece’s transplant were based on adult research, which isn’t necessarily the most accurate information when you consider the many differences between adults and children.  Reece had so many complications–things happened that likely could be prevented or greatly minimized with further research.  Finding ways to administer chemo/radiation differently, preventing GVHD, understanding what types of transplant work the best–these are just a few areas that would have helped Reece out tremendously–and that is only specific to him.  There are so many types of cancer that have such little research dedicated to them. 

I’ve struggled with knowing where we should direct our efforts in supporting research or finding something to do in Reece’s honor considering the complex nature of Reece’s situation.  Recently, however, Terry and I have discussed that it makes sense to do a monetary donation to some organization in Reece’s honor, every year on his birthday.  We still have his memorial money in a savings account and we would like to give it away every year on his birthday–in honor of him.  Perhaps we will even do fundraising to support our efforts in giving in future years.  But for now, we are going to use money that was donated in his memory.  This year, we feel it is appropriate to give to Children’s Cancer Research Fund.  Reece’s doctors work closely with this organization to help gain funding and support for further research.  We feel that this research will help future children who will be facing the same challenges that Reece faced.  We support an organization that strives to understand more about pediatric cancer, including pediatric MDS, to hopefully minimize the amount of issues that Reece faced throughout transplant, minimize the long-term complications of transplant survivors and cancer survivors, and strive to eliminate the need for children to go through the BMT process.  Giving to this organization, this year, seems like the right thing to do to honor Reece.

While I know he isn’t reading this blog, it feels entirely wrong to end this post without saying:

Happy 6th Birthday, Reecie!!!  I love you, I miss you, and I eagerly await celebrating with you again!

“The LORD your God is with you, he is mighty to save.  He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.”  Zephaniah 3:17