Thoughts on Julia... thoughts on pain.

On May 18th, Julia would have celebrated her 6 month birthday.  Mattie and I were flying to Seattle that day to spend a week with my parents.  Having a trip to pack and plan for as well as a plane to catch definitely helped distract me from any melancholy feelings on Julia's birthday.  We just got back today.  Mattie and I had a great time up there with my family.  I was hoping to do a bunch of blogging up there.  But the combination of my parents' horrible internet connection and my many late night conversations with my mom (which I wouldn't trade for anything) meant no blogging for me last week.  So here I am at home tonight and getting a moment to "catch up" a bit after a dreadful time getting Mattie to bed.  It was seriously horrible.  So bad that Bob is in bed and I'm out here in the living room decompressing from the whole thing (and it's only 9:30pm).  Mattie can really struggle with transitions like coming back from a trip or being somewhere new.  (I think she's probably pretty typical of a lot of 4 year olds... but not all 4 year olds are half as stubborn and vocal and dramatic as she is.  She can take things to a whole new level.  But I digress...) 

How am I doing 3+ months after Julia died?  In some ways okay, but other ways "worse."  I am more sad now than I was right after she died.  It's a lot of different things that contribute to that.  There are a LOT of babies being born right now in my circle of friends and that is just a constant reminder of the baby I don't have.   Life is back to "normal" with just Mattie.  Life with just Mattie is mostly what we've known.  And there is something about that "normal-ness" that just reveals even more to me that life was not supposed to be "back to normal."  My life was supposed to be different: a life with 2 children, a life with a child with Down syndrome.  Believe me when I say that I was scared of what my atypical life was going to look like with a child with Down syndrome.  But that's what I was gearing up for.  And in some ways, Julia's death brings a bit of relief from that fear.  (Though I am all too aware that life is indeed uncertain and just because Mattie doesn't have Down syndrome and our family is all "healthy" today, doesn't mean that we are exempt from more pain and hardship in the future!)  But the bottom line is that I miss HER!  My life without her is *not* normal. I miss holding her and stroking her soft read hair and gazing into her eyes.  I miss watching Mattie love her with a softness and tenderness that I don't get to see in Mattie very often.  I miss watching Bob love her and care for her and interact with her.  I loved what Julia brought out in each of us.  She was good for our family in many unexpected ways.  And now she is gone.  At our couples' Bible study the other night, I was venting and emoting during our sharing time reflecting on the past 4 years.  After 4 years: 1 year of "trying" the old fashioned way, 3 months on Clomid, 3 months on Clomid with IUIs (artificial insemination), 3 rounds of injectible fertility medication with IUIs, 2 pregnancies, 1 miscarriage at 18 weeks with no explanation of death, 1 birth, and 1 death I feel like I haven't progressed at all... I am exactly back where I started... with ONE child.  I only feel like I've been through the war. THAT is frustrating.  It's not just that I lost a child... but I can't just go "make" another if we wanted one.  Not that I could replace Julia.  I can't help but feel so jealous of women who just "plan" to get pregnant and do.  Unless you have experienced the pain of infertility, you have no idea the toll it takes and you, your husband, your marriage, your life.   And after what we went through with Julia, I'm not sure Bob and I have the guts to try again.  I'm not sure even if we had the guts, if we even should.  But we're not going to think about that for another 9 months or so.  I do know that I am forever changed from all that... some for the worse, probably, but I would say character-wise, more for better, I guess.  A guy in our couple's Bible study commented that we indeed have progressed- maybe not in making a baby, but in our character and relationship with God.  And he's right about that, I suppose.  I believe that God doesn't waste pain.  In a sick sort of way, pain is too precious to waste.  Pain in our lives is to be used by God.   Pain is kind of like a deep cut.  We have 2 options. We can try to mend the cut ourselves or ignore it and the cut will either become horribly infected and we end up in more pain than we started or the cut develops a tough outer scar that is a daily reminder of that wound.  Or we can bring our deep wound to a physician who will clean out the deep cut (this will be very painful at the time but only for a short time) and who will stitch the cut together so that it heals properly.  We will always remember the cut was there, but only a great physician can help it heal properly.  God is our Great Physician.  Only He can heal us in a way that is most healthy.  However, it is up to us to bring our pain and our deep wounds to Him.  We have to be willing for Him to work on our pain in His way and that might mean experiencing more pain on the road to healing.  Too many times, people try to ignore their wounds or stuff them away.  However, over time a large scar can form on their heart and harden it.  I also feel that in the process of really healing our deep wounds, that God must from time to time reopen them and have us deal with them again.  Or He has us reopen our wounds so that we can reach out and help someone else who is experience similar pain.  All in all, if we ultimately give God our pain, our wounds, and our hearts, He will use that for our ultimate good and for the good of others.  He will bring glory to Himself through it.  Isn't that exactly what He did on the cross with Jesus?

Mommy, where did you put Julia's bones?

Mattie, out of nowhere mind you, asked me this afternoon, "Mommy, where did you put Julia's bones?"  I was certainly taken off guard by this question!  I responded, "Are you asking because people sometimes bury people when they die and you want to know what happened to Julia's bones?"  She said, "Yes."  I was not feeling quite ready to answer this question and I certainly didn't really want to answer without talking to Bob about it.  So I told her that I wanted to talk more about it but I'd like to wait and talk about it all together when Daddy got home.  She seemed okay with that.  So after dinner, Mattie was occupied with the iPad and so I summoned Bob to the back bedroom to tell him what Mattie asked today.  He was equally taken off guard.  We decided we would wait until Mattie brought it up again since it was close to bedtime for Mattie.  We're still not totally certain how to answer her question... we cremated Julia and we're not sure how to explain cremation to Mattie.  But we're thinking about it and have talked through an acceptable answer for now.  Any advice is welcomed!  I'll keep you posted as to how we answered it when we finally do.

"The Busiest Day in Heaven"

This is a poem my friend Christina sent me yesterday for mother's day.

“The Busiest Day In Heaven”

It’s the busiest day in Heaven
I’m planning a big surprise
To let you know I love you
And that no one ever dies

Even though your down below
And I am up above
I’m sending you my wishes
And all my angel love

It’s really quite exciting
To plan this big event
For lots of gifts will come your way
And all are Heaven sent

First I’ll take a bubble bath-
My splashes might cause some rain
But knowing all the fun I’m having
Will help to ease your pain

Next I’ll get some pictures
In my halo and gown
So when you get to Heaven
You can show me all around

I have color crayons in Heaven
And I will draw some stars so bright
And place them in the sky today
For you to see tonight

Then Jesus will have story time
And I will sit upon his lap
He’ll tell me all about you
Just before I nap

I’ll awake full of energy
And play a game or two
Before I finish sending
All my love to you

After snack I’ll write a song
For all the birds to sing
And know I’ve made you happy
With all the joy it brings

At night time I’ll be tired
But I’ll still hold you tight
My arms will wrap around you
And keep you through the night

And when you finally slumber
I will kneel and pray
Asking God to bless you
On this special Mothers Day

Love,
Your Little angel

Eggs

We were all sitting around eating eggs for breakfast this morning (Mattie had green scrambled eggs) and Mattie says:

"Mommy, I like eating eggs, you like eating eggs.  Daddy! You like eating eggs.  And I think Julia is eating eggs in Heaven.  I think she likes eggs.  We are all eating eggs."

Bob says, "That's right Mattie, I bet Julia does like eating eggs in Heaven."

Three months since she went to Heaven...

4:45PM.  February 8, 2012.  Julia took her last breath.  I remember it so vividly.  Three months.  It seems like yesterday and it seems like an eternity.  There has been a lot to process.  My perspective on life will forever be changed.  In fact, since her death I have been so much more sensitive to shows on TV.  There was a Law and Order show that showed someone in a body bag that had been dead a day or so... it made me cry.  Then there was a House episode just recently where this little boy stopped breathing and the mom was totally panicking... it also made me cry.  I know first hand what both of those things look like.  I saw my daughter take her last breath and I saw what she looked like after being dead 5 hours and her body starting to stiffen (sorry for the gory details... I hope I am not making anyone feel too uncomfortable.  However, that was my reality.)  Since her death, I would not say that life has "moved on" as much as I would say that life has "carried on."  I have the day to day tasks to do and a little 4 year old to love and parent that has more energy than the Energizer bunny.  I have more than my share of "distraction," that's for sure.  Right after Julia died, I felt a bit of relief.  It's so hard to watch your baby (or anyone) struggle to live.  And then we were thrown into planning the memorial.  It was good to have such a big project to help fill the immediate void.  It was also healing.  After that, Bob and I set our focus on each other and on our family of 3 as we worked on picking up the pieces of our lives.  We tried to fill our lives with some fun (it had been a while) and we started to look to the future and started to dream again, to plan again, to have hope again.  It felt good to do that.  Last week, however, I dipped into a valley.  What a strange journey grief is.  I found myself feeling rather depressed and really sad about Julia.  It was a hard week.  I missed her.  It was like all the dust had settled and the empty space the belonged to Julia was more apparent.  I felt her absence.  I saw other babies and it reminded me of the baby I didn't have.  They baby I was supposed to have.  The baby I no longer got to hold, her skin that I no longer got to kiss, the soft hair that I no longer got to touch or rub against my cheek.  Bob was also gone on a business trip last week.  So I found myself with time alone to think and reflect.  I think the space was good.  I still have the last thing that Julia wore on my dresser.  I pick it up from time to time to smell it and to hold it.  It doesn't really smell like her anymore, but I like to think it does.  One night last week I even slept with it like some kind of security blanket.  The process of grief.  I'm 3 months in.  It's a process that will last my lifetime and take many twists and turns, so I've heard.  I'll keep you posted on mine.

In the meantime, please don't forget Julia.  Please keep praying for our family.  And please never hesitate to check in with me and ask me about her.  I haven't forgotten about her.  I think of her every day and it means a lot to know you are thinking of her, too.

She's lived in Heaven as many days as she did on Earth

Today marks the day that Julia has lived as many days in Heaven as she did on Earth... 82 days.  I know she is happy.  I am sad and missing her.  I think that as more time has gone, the hole she left has only gotten bigger, not smaller.  Many other women are having babies and life is moving on... but life for me has not.  It is just a reminder of the life I once had and do not have anymore.  I don't understand and I probably never will.  However, I do know that I loved my little Julia and I will love her forever. 

His Life Was Marked by Love, a Father’s Eulogy for his Son

(Thank you, Kim, for forwarding this to me.) 

His Life Was Marked by Love, a Father’s Eulogy for his Son
(This little boy was born with trisomy 18)


I stand before you today as a father who grieves the loss of my son – my Samuel. I’m able to stand and to speak because you’ve have been with us, sharing in our suffering. We are humbled, overwhelmed, and grateful for your love. I cannot offer sufficient thanks to you for the thousands of prayers offered on our behalf, the time spent crying with us and for us, the boundless supply of food and other practical resources you’ve provided, the gifts of love you’ve made in memory of Sam, and, most importantly, your presence with us. For all of these we are more than thankful.

Today, I want to say just a few words as a way of honoring Samuel and as an offering to God of our continued trust in His loving-kindness and faithfulness.

For months, I have tried to imagine this day – the inevitable day that we would be remembering our son. Having been diagnosed with a condition many call “incompatible with life,” I wasn’t sure what I could say, or what I would get to say, about Sam’s life.

In early November, when we did not know whether we would get to see him or to hold him alive, I wrote the following:

“How does one remember a life which ends before it begins? How can one offer a good word about a life whose every moment was coded for death? Is it all a waste? And when I consider Samuel – his life – is it a waste for him? As I think through these questions, I reflect on Sam’s experience. Our precious, vulnerable son is experiencing the fierce and undying love of a mother who cares for, nurtures, carries, and cries over him. He is hearing Micah’s joyful sounds of laughter as he refers to his brother affectionately as “Bonkey-Pants.” And Samuel is hearing me say “I love you” as I try to find a way to protect him. Would Samuel have been better off having not experienced his mom’s love? Is his brother’s love and laughter wasted? Are my words insignificant to his little life?”

Now, standing on this side of Sam’s four hour and fifty-eight minute life – and having held my son for almost that entire time – I think I’m in a better position to answer these questions.

For the short time Sam was alive and in our arms, he breathed, he studied our faces, he listened to our voices, and he responded with soft and sweet sounds. He was determined. He was courageous. He was beautiful.

In the midst of everything, I was surprised by the peacefulness and normalcy of the entire experience. I sat, cradling him in my arms, and talked with Fr. Rusty; we were two friends together sharing the grace and gift of this new life.

When Fr. Rusty stepped out for a moment, I took the opportunity to tell Sam about his amazing mom and brother. I told him about how his mother carried him selflessly without a thought to anything she would expect to receive from her love. I told him about how Micah helped us to give him his name and how much he loved being the big brother. I told him that I loved him and that I was blessed to be his dad. He heard me sing softly – a song I sang to Micah just moments after Micah had been born.

During these hours, Sam got to see Alisha’s face and hear her sweet voice as she held him in her arms. He was blessed and baptized by Fr. Rusty. Hope Mardre, his godmother, held him and spoke sweet words about our precious and beautiful boy. He got to meet our friends Lindsey and Braxton and Golson who welcomed him lovingly. Some of his extended family were able to hear his sweet voice on the phone. He was cared for by nurses and doctors who held him tenderly and who cried with us as he took his final breath. And there were many like Jeanne Dean, who had come to stay with Micah when we left for the hospital, awake and praying us through those sacred hours. Our little corner of that neonatal intensive care unit was a holy space; our time was peaceful, calm, significant, beautiful, perfect.

In short, our son, our sweet Samuel, experienced the embrace of a whole community who welcomed him lovingly into a broken and vulnerable world. Samuel’s life, however short, was a life born in love, surrounded in love, and completed in love. His life was marked by something greater than his defects, his disabilities, his injuries; his life was marked by love.

Not one moment of Sam’s life was a moment devoid of love. He was loved. He was loved fiercely. He was loved well.

Sam’s life was not a life that ended before it began. His life ended as it began: in the love of family and friends and in the love of a God who is faithful and abounding in mercy.

And Sam’s life was not a wasted life. He was a gift, a precious and beautiful gift, given to us to care for as best we could. The months that Alisha carried him and the hours we held him were some of the most profound and most significant of our lives.

Loving Samuel was our calling and I’m so glad that we got to be his parents. I’m so thankful we got to love him.