Fumbling Towards the Future

Fumbling Towards the Future

One of the comments that Aimee and I get most often is how strong we must be to be living and laughing despite the slow death of our beloved oldest child, Stella.  People ask us how we do it.  The easy answer is that we have no choice, but the longer answer is that having Stella and Sam to look after forces us to start each day.  If we didn't have them, we would have no reason to get out of bed, no reason to eat breakfast, no reason to force ourselves to act funny and crazy just to get them to smile, no reason to put one foot in front of the other day after day, week after week, month after month.  I often think that having Sam has been such a miracle because, after Stella dies, if not for him, I'm not sure that I would ever bother getting up out of bed or leaving the house again, as I'm certain the pain is going to be absolutely unbearable.  Sam reminds me that even though things feel bleak right now, Aimee and I do have a future together, and a family full of joy that we have lovingly crafted and worked so hard for.  I don't want to imagine my life without Stella.  It makes my chest hurt, it makes my stomach sick, it makes my jaw clench.  But I don't have the luxury of tricking myself into thinking Stella will be here forever.  Each day that goes by is another day closer to when she will be gone forever.  It's a maddening way to live---trying to appreciate the present, and still make plans for the future.  

When Stella first got diagnosed, time seemed to stop.  I remember the calendar for July 2011 which had once been full of play dates, school assignments, and dates, was suddenly wiped blank.  Aimee and I were afraid to plan anything in advance.  How could we when we didn't know what was going to happen to our daughter, and when it was going to happen and how.  We stopped work immediately, both dropped out of our respective school programs, cancelled every single thing we had planned for three months.  But once the shock had started to wear off a bit, once the weather turned a bit colder and the seasons changed, we realized that other people's lives had started to go on and ours had to as well.  Our son was due at the end of October, and we needed to plan for him…to buy clothes, set up the nursery, assume that he and Stella would get to meet.  It was difficult to do at first, but marked our re-entry into the community we so loved and needed.  Slowly, intentionally, we started to put things on our calendar once again.

One of the hardest things for me to do was go out in public with Sam.  At first it was so hard to be out with Sam and not Stella, that I literally ran from areas where I thought I might know someone.  I cried the first dozen times I walked by the park Stella and I used to go to after daycare.  I bawled the first three times I took Sam to the library Stella used to run around in.  I wanted to kick the tire of every car I passed on my way to the first moms group I attended without Stella.  And when I joined Rainbow Songs a few weeks ago, which I also did with Stella when she was 6 months old, I had to escape to the bathroom for an impromptu cry when everyone sang, "You Are My Sunshine" the very first week (seriously---think of the lyrics, what a sad and horrible song).  But the unexpected bonus of forcing myself to do these things has been small moments of normalcy that creep into an extremely abnormal reality.  There is an inside and outside world, and Aimee and I have been trying to teach ourselves how to live honestly and fully in both of them.  But it's not always easy.  

Even now, whenever I go out I wonder if people are judging me.  I wonder if the people who know about Stella, watch me drinking a Starbucks pushing Sam in the stroller and chatting on the phone and think I've forgotten about Stella.  Or, if I have Stella with me, I wonder if people are staring at her and trying to guess what is "wrong".  Most often, when strangers see me lifting her onto the slide like a rag doll they make a comment about how tired she must be.  And in every conversation with a stranger regarding Stella, there's a split second when I have to decide whether to just smile and not continue talking, or tell them what's really going on and then brace myself for the myriad of reactions from shock and pity to discomfort and silence. But I am keenly aware that no matter what someone's reaction and feelings are, they get to go back to their "normal" life and Stella and I become just a fleeting thought for them, whereas Aimee and I live and breathe it every moment of every day. So I try not to care too much what other people think.

Parenting Stella through her cancer over the last 10 months has had many unexpected lessons.  One of them is that Aimee and I have needed to stretch to the limit our understanding of what parenting is, what it entails, what it's overall goal is.  And we've needed to redefine ourselves, our lives, our expectations, plans and vision of the future.  Even though our lives are nothing that we ever could have even come close to imagining, we've realized that parenting is not something that leaves you, even if your style has to change and even if the journey is not as you imagined it would be.  Like it or not, Aimee and I are parents 100% of the time.  We still want Stella to eat healthily and so take the time to blend up broccoli for her, along with the ice cream.  We still want Sam to learn how to put himself to sleep and nap in his crib, so have conversations about sleep training.  We still try to remind Stella about "please" and "thank-you", even though she can't say them anymore.  And most of all, even though our dreams have been irreparably fractured, we still want to have the family we once dreamed of.

From the time Aimee and I talked about having children, we always said we wanted two.  Two felt manageable, two felt familiar (Aimee had one sister and I only had one sister until I was 16 and my brother was born), two felt perfect.  We always assumed we'd have two boys.  I'm not sure why, but that's what we always talked about.  While I was pregnant with Stella, we decided our sons names would be Evan and Finn or Evan and Owen.  We didn't find out the sex of our baby, so when Stella was born--- a perfect package of red-headed, screaming, fury--- and most definitely girl, we were a bit shocked.  But we adjusted and were absolutely tickled with our red-headed imp.  Then, when Aimee got pregnant just under two years later, we thought our dreams and our family were complete.  

But, as you know, the universe had other plans for us and our family of four.

Even if not everyone vocalizes it, I know people want to know if Aimee and I plan on having another child.  There is an overall feeling that having another baby will somehow help us heal from losing Stella, that it will "replace" her in some way.  But the truth is, we could have 15 children, children who look just like Stella and act just like her, and they still wouldn't be Stella.  You can't replace a child that you lost and you can't cancel out the agonizing grief of the death of one child with the birth of another.  No one is more aware of this than us.  

Yet, Aimee and I couldn't let go of the vision we had of our child having a sibling.  It took a lot of tears, and time, but we've finally accepted that Sam and Stella are not going to get to grow up together, they are not going to be the two children that we raise to adulthood and take to soccer practice together, and teach how to swim at a cottage and ground when they cut each other's hair into a mohawk.  That dream will never happen, no matter how much we wish it.  If we wanted two children, we would have to do something active to get that dream, because we were not going to get to keep Stella.

So, one month after Sam was born, Aimee and I decided to try to do an intrauterine insemination one time with the same donor sperm as we used for Stella and Sam.  It was a crazy time in our lives.  Stella was declining rapidly in the fall, Aimee was completely incapacitated due to her pelvic injury, we were living off of donation money, had volunteers sleeping on a mattress in our living room to help with Sam, and were eating off of the generosity of friends almost every night.  We felt like we needed something happy to distract us from the chaos and stress of our everyday lives.  We weren't in a place where we could seriously think about having another child, we just needed something to look forward to, something positive to focus on.  We decided to leave it up to the universe.  If we were meant to have another child--- this child--- it would be, and if not, not.  

We inseminated on Remembrance Day.  I went by myself because Aimee was still too injured, was in and out of the clinic within an hour, and headed home on the subway as casually as if I'd just taken a book out of the library.  

Two weeks later, we got the news we were pregnant.  Ironically, we got the news the same day we finalized the $12,000 payment for Stella's funeral and burial plot.  What a strange day that was.

Aimee and I were excited…and terrified.  We already knew firsthand how little control we have over life when it comes right down to it.  We knew that this pregnancy would be emotionally complicated, and that more than likely I would be carrying this child when our first-born died.  It was a different feeling, a different type of pregnancy.  We were sometimes afraid to be too happy, there was trepidation and fear about being judged as completely insane, even by our closest friends and family.  But what kept us from drowning in all these complicated emotions was the knowledge that we have so much incredible love, and have gained so much knowledge as parents, and we want to share it.  We want our future.

So… we are proud and pleased to let everyone know that we are due with our third child this August.  

We do not expect Sam or this baby to temper the horrific pain and sadness of losing Stella in such a painful and unfair way.  But we do expect any children we have to benefit from the lavish amounts of love we have to give, and to bring light on the days when all we see is darkness.

Over the last few months Aimee and I have slowly begun revealing our news to friends and family.  We are aware that some people might think it is a mistake.  Everyone is entitled to their own opinion, but we are confident that we made the right decision for us, and are excited to bring another child into our incredible family and community of friends.  Stella is very happy about the new baby and likes to kiss my belly and put her hand on it while she falls asleep.  We love that she is so thrilled at the prospect of another baby in the family, and hope feverently that maybe…just maybe…she might be able to meet this one as well.  But no matter what, she loves him already.  Oh yeah--- it's another boy!  

This is a time of great emotional upheaval, but also of healing and hope for the future.  We may not know exactly what our future will look like, but we are certain that it will be full of light, love and laughter…because those are the parts of Stella we will carry with us always and forever.  

"For life and death are one, even as the river and the sea are one" - Khalil Gibran

Stella is delighted with her new sibling to be!

Saying "hello" to the baby we have been referring to as "Flick".  Short for flicker of hope...and flick for how active he is!:

 Stella waking up from a nap...check out that hair!!!