this child is loved

The evening that Reece passed away I remember saying to Terry that someone could storm in, hold us at gunpoint, and I wouldn’t even bat an eyelash–I felt so numb to life.  That numbness has gradually lessened over time.  That intense period of being oblivious to sincere safety concerns was very short, thankfully.  I then went through several months of feeling a loss of interest to make decisions that would somehow re-engage us in life activity.  It has been a very slow process of taking on small things that start to integrate us back into normal circumstances and to begin trying to really “live” life.  We are still working on this on many fronts.  However, where I really struggled those first few months was in my willingness to take on anything further than that to which we had already committed.  We had our girls, our home, and our current life at the time.  I had no desire to even entertain the thought of doing more.  My thoughts were solely about caring for the girls, figuring out what God’s ultimate calling was for me (which I accept may solely be taking care of my kids and husband), and completing it.  I really spent most of the day with my head focused on Heaven and Reece and getting there in the minimum amount of time God would require.  I could not fathom making decisions that would tie us here any longer or doing things that would tie us to this life any further.  This may not make sense to you, but my thinking was to do the best I could with what we had chosen to take on and not entertain engaging in anything that might get us invested in life here any further.  It sounds strange, but to me, it makes perfect sense in the context of what we’ve lived through.  We’d witnessed so much–our innocence had been lost–and other than raising our girls, I wanted nothing further to keep me here.  In the back of my mind, I know that God doesn’t work like that, but that was where I was at and I know that He understood it, perfectly.

Then, late last Fall, I happened to watch an interview of Barbara Bush on the TODAY Show. (Click here to view this clip.)  Interviewed by her granddaughter, Jenna Bush Hager, the former First Lady discussed the passing of their second child–a daughter named Robin–from leukemia; she was three years old.  I had no idea that George H. W. and Barbara Bush had lost a child and as the interview continued, she discussed some intimate details regarding watching her daughter pass away.  What she described hit very close to home in our own experience of watching Reece pass away.  Most people, including myself, do not discuss such details publicly and it was helpful to hear her talk about it.  She spoke of how she and the former President still discuss their daughter and how they felt about losing her.  She mentioned that now, as they are approaching the end of their lives on earth, they discuss her even more and how excited they are to see her again.  As I listened, it occurred to me that they had several other children after Robin died.  George Bush went on to work in many high level positions, including being the President of the USA.  They raised five children (four having been born after Robin died), including one future US President.  They figured out a way to hold it together, to heal, and to be active again in life.  They took on new challenges.  They didn’t stop having children, they didn’t let it cripple their plans in his career, they didn’t crumble as a family.  Watching this interview helped me to realize that it would be okay, at some point, to take new things on in life.

A few months ago, I posted this picture on my Facebook profile page:


I stated that this is what my dream looks like–to hold Reece again.  I’ve actually already lived and felt my dream.  It has temporarily left me, but it will be realized again one day.  In reality, it will be different from this, as you will notice, not all of our kids are part of this picture.  My dream contains this scene, but it includes more people than what are pictured.  Reece is only part of it–the entire picture is having my family reunited.  In all likelihood, that could be close to 100 years from now, but I strongly believe it will happen.  I have come to accept that I will never have a family photo with all of us together on Earth.  We won’t ever feel “whole” here, as a family.  Once I accepted that reality, I was able to better understand that we still had a strong desire of the heart to raise three kids together.  We have wanted for quite some time to have the dynamic of three children in our home.  This desire did not go away with Reece’s passing.  Certainly, I thought we would raise Reece, Britta, and Scarlett together–I really wanted that.  That will never happen for us.  So, after careful consideration and definite prompting from the Lord, we opened our hearts to having another baby.  One month later, I was pregnant.

Here we are, beginning our second trimester, feeling blessed, overwhelmed, and slightly confused as to how we exactly got here.  We considered not sharing the news until later in the pregnancy, but this being my fourth baby, it is not as easy to hide my belly this time around!  In all seriousness, I want to share that this isn’t some attempt to replace Reece or distract us from the process we are going through.  This isn’t about trying to have another boy to somehow fill his absence.  He is “The Boy” in our family.  We are excited to have either gender and excited about the prospect of potentially having the family dynamic of three children in the house…even though we are having our fourth child.  We went into this pregnancy with our eyes wide open to the entire spectrum of parenting–the wonderful and obvious blessings, the heart-wrenching moments, and the gems that can only be uncovered through trials and tribulations.  In my opinion, it has been a much more difficult endeavor to entertain having another child–considering the understanding of what it is like to physically lose one–than it would have been to not have another baby at all.  Ultimately, the blessing of loving a child–no matter how short a period we were blessed to have him with us–far exceeds the emptiness that would have been felt by not having him in the first place.  This is true for all of our kids–born and unborn.  So, we went back to the desire and calling of the heart and it was, indeed, to try to have another baby.

We talked at length with Reece’s doctors, after he passed away, about whether or not having another baby would be a negligent decision.  They assured us it would not.  There are only a few cases of siblings having childhood MDS.  We know that anything can happen to any of our children, but we did not feel that Reece’s diagnosis should be a deterrent for having further children–at least from the perspective that we would be putting future children, knowingly, in harm’s way.

Here we are, pregnant again!  We are excited and cautious; overjoyed and still fresh in grief.  This is, indeed, a blessing.  We have no expectations for a boy or girl–no hopes one way or the other.  We hope for a healthy baby, but we know no matter what, this child is loved by us and three older siblings.

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