Father's Day

The facts in my world on this day: Mitch was and is such a good father to Miles. And Miles died four days before Mitch's first Father's Day. Mitch will never have Miles with him on Father's Day.

I can easily say that I never want for Mitch to be in pain. But I know that's not to be for him. I know that joy and pain coexist for him just as they do for me. On most days, I know we are feeling the pain together and together we let it be--sometimes talking, sometimes listening, sometimes silent, sometimes crying. But on this day--on Father's Day--I so wish I could take the sorrow away from him. I so wish that Miles could be here with Mitch for Father's Day and every day. Oh, it hurts. Yet just as he said to me on Mother's Day, "I didn't get you a present because I can't get you the one thing you really want." And so the best I can do is to be with him, remembering...

Oh, how Miles loved his daddy. There were so many days in the hospital when, with me, Miles would sleep all day and then as soon as he heard Mitch's voice in the afternoon his eyes would pop open. And whenever he heard the rattle of the "orange guy" toy--the ridiculous orange creature that we could never figure out if it was a squirrel or a dog or who knows what really--Miles would look for it...looking more for his daddy than the toy.

And then there's this video that my sister took of Mitch playing with Miles...

Our days in the PICU were torture yet glorious (two terms that should just never go together, I admit). Those are days that we would never trade since they were our only days with Miles. They were happy times because there was Miles; we did whatever was needed because there was Miles, putting so much love in our hearts. Still, the days were so heartbreaking and draining for each of us in different ways. Mitch was balancing being a doctor, knowing the medical world, carrying the weight of understanding and explaining everything to me, while all the while being Miles' daddy. Taking off the white coat (sometimes literally), tuning out his medical world, and just loving his son--it was and is one of the most touching, lasting images I have of Mitch. Miles was his boy and was so, so loved.

This day snuck up on us today. We were so focused on June 16, the anniversary of Miles' death. We are past the one year mark of Miles' life. And here we are on yet another day of longing--longing that the end of Miles' story could have been different, that our story could include him right here with us on this day.

Soon our second child will be here...a whole new world with a baby girl.  I'm so looking forward to seeing her with Mitch. Soon, I hope to have many memories of him with our baby girl. Still--there's this one thing that is in my head and in my heart---when I see Mitch as a father, it's as Miles' daddy first and there's joy in that for me.

Dear Miles

I wrote a letter to Miles last year and read it at his memorial service in New Hampshire. I wrote to him again this year with a heavy heart on the one year anniversary of his death...

June 16, 2011

Dear Miles,

My sweet baby boy, not a day has gone by that I haven't thought of you and held you close in my heart. The memory of your sweet face and powerful spirit make me smile. It is hard to think that it has been a year since we last held you in our arms, but I can see it and feel it so well in my heart. And that is the thing that brings me peace--to think of holding you and to think of the treasured time that we had with you that I am so grateful for.

The world is different since you left, Miles. You made my world better. In the moments when I smile and laugh and love, I think that is when I honor your memory the most.
Yet the world is a sadder place without you. Part of me left with you, and I'm glad about that. I like to think that the part of me that left is with you. You deserve that, I know. In the moments when I cry--when I see with such clarity that you, my sweet son, are gone and all of the heartbreak that brings--I think that is when I honor your memory well, too.

Miles, you have a little sister on the way. It breaks my heart that she won't get to meet you and grow up together with you. But she will know you, sweet boy. We will tell her all about you. Soon--we hope and pray--we will be doing all of the things with her that we hoped to do with you. She will remind me of you and, as I try to be a good mommy to her, I will think of being your mommy, too.

I am so sorry that you are not here, Miles. But I think of you as being with me every day and every moment...it's not in the way that I had hoped and dreamed of, but you are with me. It's hard for me to imagine where you are, but I hope and pray that it is joyful, without pain, and with so much love. I hope that you are free and happy where you are, and I hope that you can feel the special squeeze, kiss, rock, and head rub that I send you every day but especially today.

I love you, Miles.
Mommy

Dear Miles (my letter from one year ago)

I wrote this letter to Miles one year ago when we lost him, and I read it at his memorial service at our family cemetery in New Hampshire. Now on the one year anniversary of his death, I'm writing a letter to him again--which is yet again a very emotional endeavor that is taking a few days. So first I'm sharing this letter to Miles, remembering how desperately I wanted him to know he was loved and how desperately I wanted him to be remembered for his charming, fighting spirit not for his death.

June 16, 2010

Dear Miles,

My sweet baby Miles, you are a treasure to us.  You showed us every day that you had such spirit and personality.  You were a sweet angel yet a mighty fighter.  You got an unfair share of troubles but also an unfair share of good looks.

I am heartbroken.  But, Miles, it is not all sadness.  Believe me that 140 days in the PICU were filled with many worries and fears.  Regardless, you filled my heart up with happiness and these are the memories that I will have always.

-Remember when you were born and your nana, daddy, me, and you made it to the hospital in the nick of time.

-Remember when your family members visited you and rubbed your head, held your hand, read to you, and sang to you to make you happy and to show you much we loved you.

-Remember when we stopped noticing the tubes and lines, and held you and rocked you.

-Remember the night you started breathing on your own, you cried and cried and nothing made you stop...until I held you and sang the Itsy Bitsy spider nonstop.  

-Remember the next day you smiled so big for your daddy and me because we were all together.

-Remember when that doctor made me cry, you gave him a dirty look.  Miles, even though you didn't know what you were doing, that was the right thing to do.

-Remember right after your second heart surgery when you were supposed to be out of it, you wiggled your hand when you heard your daddy's voice as he told you how proud he was of you.

-Remember how each of your nurses thought that she was your favorite, which was such a smart thing for you to do.  It's just that your sweet angel face, feisty personality, and slight hint of a mullet were perfectly irresistible.

-Remember how I told you that you were a celebrity.  So many people -- higher than you can count -- have prayed for you and rooted for you.  Some of those people got to meet you and see your precious little face.  Some of those people are here now.  And still others are all over and they all continue to love you.  They will help your mommy and daddy by remembering you and celebrating you always.

Miles, I cry today because I miss you and I wish you could be with us always.  I cry because we knew you so well and can imagine what it would be like to help you grow up.  I cry because I wanted a long, full life for you.  I cry because I want to hold you.  And I cry because you never got to go home with us.

But I smile because your are home in heaven now.  I smile because you will always be a treasure to us in our hearts.  I smile because you've taught us so much about life.  I smile because you're the only person who ever thought I was a good singer.  I smile because I will always remember exactly how it felt to hold you.  I smile because of something I told your daddy; I said to him, "You can't be sad for more than a second when I die because you'll know that I've gone to heaven to hold that baby."  And I smile, Miles, because you were perfect and ours and very, very loved.

XOXO, booty shake, head rub, and snuggle,

Mommy

Parenting, Inc.

Oh, how I love the public library. Let me count the ways. It's nice and cold. It feels like shopping, which makes it free retail therapy.  And reading is pretty much the perfect activity (besides standing in the refrigerator section of the grocery store) for these last few hot, hot, hot weeks of pregnancy.

I just finished reading Parenting, Inc. by Pamela Paul. I picked it out because I wanted to read a parenting-themed book yet somehow the typical get-ready-for-being-a-parent book doesn't exactly hit the target for me. There aren't tons of books out there for parents expecting their second child (especially ones who lost their first child), I've realized, mostly because parents expecting their second child don't normally have time to read, I'm guessing. Anyway, I had already tackled multiple books about raising a bilingual child (for some reason, I feel like I should give this a try), speech development, and my favorite NurtureShock. Anyway, Parenting, Inc. promised to be an entertaining one, and I loved reading it.  In a nutshell, it was all about how we as a society have come to a place where we spend way too much money on our children and we have become big suckers for overscheduling our babies and doing whatever thing/class (baby sign language, baby classes, so on) promises to make our child smarter, faster, more advanced. It was a good reminder of what's important (and what's not!), I thought.

After flipping the last page and closing the cover, I proceeded to tell Mitch how I was so glad that I read it because it just reinforced some of the ways we want to parent.

And then there was a pause in the conversation. We both looked around the living room and, as always is the case, our eyes landed on our beloved photos of our sweet boy. Our Miles who should be here filling our days. Our Miles who captured our hearts and will forever hold his special place in our lives. Our Miles who we watched every moment of four and a half months...just in awe of every little thing about him and just seeing him on the verge of growing up, making it, being with us always. Our Miles who isn't here in the way we dreamed for him to be.

We were silent, letting each other be alone with our thoughts of him.

And then I felt ridiculous for thinking that the book had taught me anything important about being a parent. Miles had already done it. With Miles, we were in parent boot camp. Sure we weren't doing the typical night-time diaper changing, feeding, and burping or many of the typical parent things. We were purely focused on Miles--the happiness of seeing him every day, the significance of every little step forward, the fact that nothing is a sure thing and nothing is to be taken for granted. In his four and a half months, he showed us everything we needed to know. And they were the big lessons. Truly be in the moment. Learn whatever (medical terms galore, baby massage) and do whatever (fly on a medical plane to Michigan, live in The Ronald McDonald House, wait for hours--barely breathing--during surgeries) is needed.  Celebrate life and life's little moments. Do whatever is comforting to my sweet baby even if that means singing in front of nurses, sleeping in a chair for weeks, rocking his booty side-to-side for hours at a time. Insignificant stuff is really silly and insignificant. Let people help. When you can, open your life to others to share the highs and lows with you. Keep praying and hoping yet know that not everything is in my control though I desperately want it to be. Love is stronger than death. Being a mommy is the most magical thing to be...there's just so much really...

"Our sweet boy taught us everything we really need to know about being a parent," was all I could say.

One year and beyond

I don't want for June 16 to come. I don't want the devastation and heartbreak (though those things are here regardless of the day) of that day to be relived. The sadness of Miles' death and the permanence of him not being here each and every day will always be here regardless of the date on a calendar. But, I realized today, I don't want to be past the one year mark. Most of all, I don't want for it to be more than a year since Miles was here. I think that boils down to me not wanting him to be moving further into the past while we move further into the future. And then it makes me nauseous that we'll be parents who have been grieving for more than a year--the world will want for us to be in a better place after a year, I know. That is frankly ridiculous. Yes, we work to come to a place of "peace" in our lives and to love, love, love our boy, carrying him with us as we live forward. But it doesn't get easier or better with a year. 


Do I want to be frozen in time? Well, no. I'm ready for the days to come. And I know that my days will be full of joy and pain. I'm eager. Yet...

Most of all, I guess, I still want to scream that our sweet Miles is gone and it is so unfair to him not to get to have a full life. I want to scream that we have so many joys in our life and we are heartbroken. Still. And I know it will take a lifetime of grief; I will miss Miles every day of my life. The joy that I have is that, in my heart, it feels like he was just here. When I close my eyes, I can see his face so clearly and feel him in my arms. His spirit will be part of me every day--and, in that way, I know that it won't matter that we're passing the one year mark.  

Let it be

The invitation in the mail arrived a few weeks ago. We were invited to a Service of Remembrance at the hospital. It would be a service especially for parents who had lost babies and children as a time to remember their loved ones. Bittersweet. I didn't want to go yet I wanted to go. There is something so comforting really about being in a place where people don't know you, yet you have this unspoken understanding with them, and--most of all--the only truly identifying thing about us is that we're Miles' mommy and daddy. No explaining is needed--we're Miles' mommy and daddy.

Yesterday was the day.
Mitch and I made the walk to the hospital together, noting of course that this was a walk that we had done together many times to go to Miles in the hospital.
As soon as we walked in the hospital chapel, I felt the calm and quiet...and I was overwhelmed with not wanting to be there. Not as in we should have RSVPed "no" to this event. As in, I wish our lives had taken the different path that seemed so close--the one where Miles was here and we had him every day with us and had no need to go to a service of remembrance.

"Oh, Miles," my heart whispered and the tears started as we waited for the service to start. Mitch held my hand and there we were. The two of us, still side-by-side, remembering Miles. "We don't need a service to remember Miles, that's for sure," we had already told each other. Yet it was good to be in the hospital--the place where Miles lived--and to be there just for him.  To do this thing for him that, well, was really for us.

The service was special; everything was designed just for us. Surprisingly the part that struck me most was when two women sang "Let It Be" by the Beetles, and I cried through the song. I am not embarrassed about crying (that changed once we lost Miles), but it did strike me as wild (yet somehow appropriate) that I was a hot mess during a Beetles song where at times the two women were accidentally singing different verses of the song, there was the constant hum of the Spanish interpreter, and there were children quietly talking to each other in the back of the room. Yet it was beautiful.

With our grief, the chaplain said, there is often nothing to do...we just have to let it be. Our memories, our joys, our pain, our grief are just there, at times washing over us even stronger than expected, and there it is...just let it be. And that, to me, is so true. With losing Miles, there's no fixing it like with other things in life, there's no putting a positive spin on it, there's no "getting over it" or moving on.  I just have to let it be.

So it was good (as good as it could be, I still feel the need to say), in an emotionally draining kind of way. Each family received a paper leaf. An artist had designed a tree with bare branches and all of the families had an opportunity to write messages to their children on the leaves. The leaves were added to the tree, all of our messages filling the tree. Mitch and I wrote our message--the one thing that I pray he knew and knows still--on the leaf: We love you, Miles.

June

And now I know. Yes. June will be painful.

Last year, we medically transported Miles from Chapel Hill, North Carolina to Ann Arbor, Michigan at the end of May after almost 4 months in the UNC PICU. We went to Ann Arbor in the hopes that one of the top pediatric cardiothoracic surgeons in the country would be able to help our Miles. Miles' complete heart repair operation happened on June 1, 2010.

So there it is. June. June 1. That's the day that they came to the waiting room after Miles had been in surgery for hours; that's the day they told us, "It's rocky down there." And we sat and waited, crying, waiting, envisioning Miles fighting his fight. That's the day that the heart repair ended up going "well," they said...but that's the day that Miles wasn't able to come off the bypass machine.  That's the day that Miles had to be supported by ECMO--the baby heart bypass machine that took Miles' blood and oxygenated it, doing the work of the heart, before giving his blood back to him.
That's the night that Mitch and I went in at 2 am to see Miles after surgery. There he was, our sweet Miles, tough and beautiful amid all the chaos. Despite all of the pain medications, that's the night that Miles wiggled his little hand and raised his arm a little bit when he heard his daddy say, "Good job, little man. I'm proud of you."

We still had hope. He just needed time to recover from surgery and then he would get off ECMO, we hoped. For days, Miles continued fighting, kept working on his purple paci, tolerated yet another heart surgery, peeked his eyes open at us. Looking back, of course, this was the time that everything fell apart.  All the way to June 16.

And so June is painful. Miles went through so much, so much, so much to not get to be here now. It will never be right.