Sunday, June 28, 2015

Why Eight is Especially Great

The birthday cowgirl!
Today we threw a Cowgirl Birthday Party to celebrate Julia's 8th birthday!  Yee-haw!

I feel like we've been going non-stop for about three days getting ready for this party - not to mention the four weeks of Pinterest pinning and planning I've been obsessing over. All the work paid off I believe because it was a fabulous day spent with friends and family celebrating our amazing Julia!!

Every birthday is worth celebrating in my book - every birthday is a gift we rejoice over and an opportunity to reflect on how thankful we are to have Julia here. But there is a very specific reason I wanted to celebrate big time for number eight. Beyond marking another year with our precious Jules, beyond celebrating all she has achieved and accomplished and overcome, eight has a special meaning in our story. Eight is significant.

The significance of Julia turning eight is traced back to a moment when Julia was just 9 weeks old and we met with a genetics counselor at Children's Hospital to discuss the findings of her chromosome testing. 

"She has a chromosomal abnormality," the counselor explained to us, "An unbalanced translocation of chromosomes 5 and 6. There are no other documented cases like hers, so Julia will just have to show us what this means for her.  But we have found one case with some similarities, a little girl in Wyoming who developed epilepsy as an infant and leukemia at age 7." 

So, there you go. Two lines in a medical text book - epilepsy and leukemia.  That was the extent of the prognosis they could give us for our precious 9 week old baby girl. That was all the detail available to equip us as we faced the rest of our lives. 

I left that appointment and tried to tell myself Julia was not the little girl in the book, that their differences were as significant as their similarities and the information in this medical text book did not sentence Julia to follow her same path. I tried to tell myself this, but then Julia developed epilepsy as an infant and it became a little harder to believe that "Leukemia at seven" would not be our story as well.

We've done our best in the past eight years to live life fully - growing and developing and at many times blossoming right along side our girl. Learning from her about how to take life one moment at a time and to love each moment for what it is, not what it could or should have been. We've let go of expectations and focused on celebrating the lives we've been given. Julia has taught us this. Julia lives without fear. And I think we have done a pretty good job at this living and loving thing - and we've worked very hard not to let fear cloud our joy. 

But if I am totally honest, "Leukemia at seven" never left my memory. It lingered in the back of my mind, poking my peace and fanning unwanted fears, especially as seven grew near. I would google leukemia symptoms anytime Julia seemed a little off. I'd read up on all the warning signs, especially the rare ones. I'd ask doctors to run tests - just to make sure I didn't miss it's arrival.  One doctor asked me "Why the concern about Leukemia?"  I looked at her as if the answer was so obvious, "Because it was in the book!" As if she knew which book I was talking about. You, know, THE book. The book that told me this could happen to Julia - it's in that book - so can you just do that blood test please?

And now, here we are, and eight has arrived! And it feels significant, like we've made it to something big or past something big. And even though I know that nothing has actually changed over night, that Julia hasn't magically become safer than she was when she was seven, it still feels big. Nothing changed for Julia, but something changed for me - my narrative has shifted, some burdens have lifted -  and that makes this one day pretty darn powerful. That makes this one day worth a big celebration!

Yay for eight! 

Eight is great!



Friday, June 26, 2015

Guest Post: Macey's 3rd Day

June is always a contemplative month for me. Julia's birthday and the due dates of our other two girls, Joy and Pearl, all fall within June, and I always find myself reflecting on the significance of small moments and single days that fundamentally shift the course of our lives.

Days that make us and break us and make us again.

I imagine that at the end of our lives if we are given the time to reflect, our reflections will consist of a handful of days which built the framework for the rest of our lives to exist within.

It was during this time of reflection that I was reminded me of a beautiful essay my dear friend Arlene wrote several years ago about her daughter Macey and one of these significant days. I asked Arlene if I could share her essay here and she graciously said yes.

I'm so honored to share my dear friend's writing. I met Arlene Thomas 10 years ago in grad school, where we were both studying to become marriage and family therapists. She is one of my dearest friends and someone I have looked to often over the years as a model of how to live beautifully with pain.

This is for all of you who can appreciate the restorative power of one single day. Thank you Arlene, you are one of my heroes and I love you!


            On the third day of my daughter Macey’s life, I was reborn.  For many new mothers, the third day of their baby’s life might pass in a blur.  Those first days blend into one another under the fog of sleeplessness and awe.  For me, Macey’s third day stands out as one which fostered a renewed sense of hope.  It was a day I was scared to dream about yet anxiously awaited.  With so many days full of enormous emotional meaning, it is difficult to pinpoint the most important day of my life.  But in many ways, the third day of Macey’s life was a day of rebirth for me. 

Macey was not our first child.   Her big brother, Micah, was born two years prior.  When my husband, Ben, and I got married we had a master plan for our lives.  We knew we wanted kids, two to be exact.  We both wanted to complete graduate school and be married for five years before starting a family.  After we checked these milestones off our list of things to do, we expected to get pregnant in a timely manner and live happily ever after. 

Right on target, I finished graduate school, and we celebrated our fifth anniversary while I was pregnant with Micah.  We imagined the countless ways he would be integrated into our family.  I thought about what outfits he would wear when I took him on his first outings. I envisioned taking him to his first baseball game.  I dreamed about family gatherings where we could show off our beautiful little man.  After a smooth pregnancy and birth, we welcomed a healthy little boy into our family.  We were elated with our son and were so excited about carrying out our new roles as parents. 

Tragically all the hopes we had for our future with Micah were shattered in an instant.  Micah passed away unexpectedly in his sleep the morning he turned three days old.  We later found that he had died as a result of Sudden Infant Death Syndrome, a mysterious phenomenon that remains a medical mystery.    

As the initial shock wore off, the pain I felt in losing Micah seemed to touch every aspect of my life.  Eventually, all the clothes we had bought, washed, and sorted for him had to be packed up along with his completely furnished and decorated room.  Unused supplies were either returned or stored. 

During this time, I also slowly began to recognize the innumerable ways in which Micah’s life had impacted mine.  In this, I began to see how much Micah had taught me about unconditional love.  Although he was no longer physically with us, our love for him only continued to grow, showing me how powerful love can be.  Having given my love to Micah so freely, my heart was broken beyond description.  After his death, I was unsure if I would emotionally ever be able have another child or to love another as much as I loved him.  However, the time Ben and I were able to share with Micah made me realize how terrifying it can be to love so deeply and yet how much we wanted the chance to have another baby and be parents in the “normal” sense of the word. 

Six months after losing Micah, we started “trying” again.  With this decision, we knew there was the possibility of experiencing great joy and a renewed sense of hope, but there was also the chance for tremendous hurt.  A few months later, we were cautiously elated to learn we were pregnant again.  Although at first I was afraid of connecting with this new baby, I also felt like Micah’s little sister or brother deserved that same unconditional love we gave him.  I also wanted to appreciate every second I had with our new baby, realizing each moment was a gift.

Nearing the end of the first trimester, we went in for a regularly scheduled doctor’s appointment.  After weighing in, having my blood pressure taken, and getting measurements of my uterus, everything looked great.  However, minutes later our doctor was unable to find a heartbeat.  At that moment, it felt like our hearts stopped beating as well.  We had lost another baby.  Through testing, we were able to find out that we had a little girl, who we decided to name Morgan.  My mending heart was once again crushed. 

            Despite all the grief we endured, our desire to have a baby continued to grow.

           Three months after losing Morgan, I was pregnant again, this time with Macey.  From the beginning, I was both wrought with fear and overjoyed with every moment we had with her.  Every time I threw up, every bout of heartburn, every pound I gained reminded me this was exactly where I wanted to be. Every heartbeat I heard and every kick I felt was life affirming. 

          During Macey’s pregnancy, I literally took life one day at a time.   I never knew how to answer those who asked how I was going to decorate the nursery, what method of childbirth I was planning, or where I had registered for gifts.  Those aspects of pregnancy and parenting seemed so inconsequential in light of the truth I knew: I wasn’t promised a future with this baby.  What I did have was the present and that is what I focused on.  

As days turned into weeks and weeks turned into months, I was forced to start planning for my baby’s future.  I had to pre-register with the hospital for my delivery.  I had to research insurance plans.  I had to choose her future pediatrician.  With every plan I made, I feared having to go back to undo each of them if we lost her. 

One week before I delivered, we hadn’t even bought any supplies or clothes for our little girl.  We finally decided to buy only the absolute essentials.  It amazed me how buying a five pack of onesies felt like a new level of commitment to believing in Macey’s future.

The day I gave birth I had such mixed emotions.  Between missing Micah, wondering what it would have been like to have Morgan, and anxiously anticipating the birth of Macey, I couldn’t help but wonder if my faith in hope could be renewed.  When at last I saw and held Macey for the first time, I was in awe.  She was here.  She was healthy.  She was beautiful.  There was relief in finally being able to see her, along with continued fears that at any moment something could go wrong.  There was a nagging realization that we would never truly feel like we were out of the woods. 

Knowing that many of our friends and family never got the chance to see Micah, there was a sense of urgency in our desire to have those closest to us meet Macey.  I started to memorize all of her features and yearned to get to know her as much as possible.  Every hour seemed like a lifetime of opportunity to spend with her.  My husband’s family had come into town for the birth and planned on staying through the following week.  The only way Ben and I were going to get any reprieve from our fear was through knowing that someone would be holding and watching Macey around the clock. 

Somehow we made it through Macey’s first two days of life.  But there was also a sense of foreboding as her third day came near.  At the time, it was too scary to acknowledge our fears out loud, but we all felt the day’s brooding approach.  Knowing that I desperately needed to get some sleep, Ben’s parents offered to stay up with Macey during the night shift that would lead into the ominous third day.  That night, as I tried to force myself to sleep, I kept my mind occupied with anything other than the fear that loomed just below the surface.  Somewhere in between distracting myself with thoughts of paint colors for our bathroom and what I wanted to eat the next day, I was able to fall asleep.  Amazingly, I slept soundly until Ben’s mom woke me up for Macey’s next feeding.  I looked at the clock and it was 4 am.  It was the next day.  It was Macey’s third day.  She made it through the night!  We made it! 

That morning, as I joyously fed Macey, I thought of Micah and the heartbreak which began on what should have been his third day.  I thought of the lessons on life, love, and gratitude that were instilled in us through his short life.  I looked down at my beautiful little girl, Micah’s little sister, and recognized seeds of restoration.  Restoration in acknowledging my own capability to be a parent.  Restoration in my hopes for the future.  Restoration in my ability to acknowledge my fear and pain while at the same time allowing those experiences to guide me to recognize the gift of life.   

My dear friend, I love you so!