A New Birthday Tradition

Today we went to Dr. Videlefsky's office and to Egleston.  It is the start of our tradition to honor Samuel's birthday by taking goodies to the people who served us and cared for our son.  It was a good trip, and Bryan and I are both really glad we did it.  Dr. Videlefsky was kind as ever and sat down with us for a few minutes, asking how we're doing, mentioning how much he was touched by Samuel's memorial service, and asking us about our efforts to have another child.  He was compassionate and gracious as always.  It was good to see him.

At Egleston we went straight to the CICU with lots of cookies for the staff and a big bowl full of prepackaged munchies for the parents of patients.  We got to see some familiar faces and give hugs.  One doctor, Shri Deshpande, came up to us and said that just recently another baby was diagnosed with coronary fistulae (something they hadn't seen in a baby before Samuel), and he was in the exact same dock as Samuel was when he was first diagnosed.  He said he thought of us. 

As soon as we walked through the CICU doors, Caleb headed straight for Samuel's old dock.  He was completely honed in on 2112, Samuel's spot.  It was clear that he remembered being there.  We introduced everyone to him by saying that they took great care of Samuel, and that seemed to really matter to Caleb.  When we left the floor, Caleb told Bryan that he felt sad and "tears dripping."  He laid his head on Bryan's shoulder and cried a little.

On the way to the hospital, Bryan and I talked about how important we felt like the trip would be for Caleb and Joel.  Since they're so young, their memories of Samuel will mostly be from what we tell them and from pictures more than from remembering the actual times they spent with their baby brother.  We really wanted today to spark some personal memories for them, to remind them that they really did get to see Samuel and be with him -- that what feels like a vague recollection really, truly did happen.  I think the trip did just that -- especially for Caleb.  We purposefully visited all the places where they spent time last year: the library, the lobby, the garden, and the gift shop.  We let them do all the things they'd done before -- pick a book to read from the library shelves, push the buttons on a huge wall screen in the lobby showing different sea creatures, play hide-and-seek outside in the garden, and check out the cars and trucks in the shop.  They had fun being there, and it was familiar to them both.

In the days leading up to today, we had talked to the boys about Egleston and going there, and Joel on more than one occasion said he was excited to go see Samuel.  Even on the car ride this morning, he said it.  When we addressed it again -- telling him once more that Samuel isn't there; he's in Heaven -- he said, "It wasn't me saying that.  It was Mace."  Mace was his Star Wars toy he brought in the car.  Whenever we asked Joel questions about Samuel and where Samuel is, he always got them right, but clearly something in his mind must not have completely clicked.  Thankfully he didn't seem at all distressed that Samuel wasn't at Egleston today.

On the ride home, we asked Caleb and Joel about our time there, and they both said they felt sad at some points.  We asked them what they remembered from last year, and they listed off numerous things they could recall.  I think it was good for them to feel more connected to their baby brother and to be sure his life was real. 

Overall, I think today was the hardest for Bryan.  He was visibly having a hard time, and on several occasions I saw him on the verge of tears.  But we both think that having a hard time was probably a good thing for him, and he is really happy we went.  We're both satisfied with our new tradition, this way of remembering Samuel and blessing others.  We count ourselves so blessed to be Samuel's parents, to have had a month with him alive, and to have grown so deeply because of how he touched our lives.  We want to share that blessing, and we are grateful for this small way to do that.

Here are some pictures of what we took (and of the mess I made baking it!):

This was around 11:00 am.  Caleb was my amazing helper.  He really did offer me some incredible assistance!

This was after the heart cookies (seemed appropriate for the cardiac wing) were finally frosted.  

All ready to go -- at 10:30 pm.

This is the basket we put together for the parents.  We wrote a letter to go with it.  In case you're interested, here's what it says:

Dear CICU parents and loved ones,

 

Last year we spent an agonizing month in the CICU here at Egleston, and we wanted to do something small for those of you who are here now.  We know the unbelievable ups and downs of having a child in the CICU, the moments of great hope and the moments of great fear.  We know how hard it is to leave your son or daughter for shift change or to grab a few bites to eat in the cafeteria.  And we know the long, gut-clenching walk down the hall back to the CICU when you wonder if you're walking into bad news and a crowd of doctors and nurses around your child.  Everyone's story is different, of course, and we are praying for you in yours.  We pray regularly for the children in the CICU and for their doctors and nurses to have wisdom, vigilance, compassion, and attentiveness. And we pray for you, the parents of those children, who are facing such uncertainty, such powerlessness, and such fear.  We pray for you to have peace as you sit by your child's side, for you to be able to sleep soundly at night when your head finally gets to touch a pillow, for your marriages and families to grow closer and stronger through this tribulation, and for you to even experience joy in these days at Egleston.  We want you to know that you and your child are being prayed for.

 

With much care,

Bryan and Kathryn

 

In loving memory of 

Samuel Erik Apinis

August 1, 2009 - August 31, 2009

 

And here is what we wrote to the CICU staff:

Dear CICU Doctors, Nurses, RT’s, and Staff,

 

Thank you for what you do everyday.  You touch families’ lives in a way no one else can as you care for their children in ways they cannot.  You have the chance every day to be a bright spot in a dark road for these families, and so many of you did just that for us last year.  Thank you!

 

We have decided to start an annual tradition celebrating Samuel’s birthday; we will come back to Egleston with goodies for the people who work so hard to give these precious children life.  So, in memory of our sweet son and in celebration of what would have been his first birthday, we want to say thank you and give you some cookies from us.

 

You don’t know how much you’ve blessed us and how we will thank God for you all of our lives.

 

Many thanks,

 

Bryan and Kathryn Apinis

Samuel Erik Apinis’s dad and mom

(August 1, 2009-August 31, 2009)

 

I Have the Best.Mom.Ever.

Today my aunt Colleen came over to drop off something from my mom.  Mom put together 11 envelopes with money in them to do something fun every day from August 1-August 11, when my mom gets here for a visit.  Each envelope has a label on it saying what we should do with it: breakfast or dinner out, Sonic treats, a new toy for the boys, lunch out, some flowers, a Starbucks drink, pancakes out, a treat for Momma, some jelly beans (save the black ones for my mom :) ), a treat for Daddy, and lunch on our way to pick my mom up from the Marta stop.  How kind and thoughtful of my mom.  I shouldn't be surprised because that's who my mom is, but I am touched and blessed.  I think it will be really helpful to have something everyday to look forward to.  I am blessed!  Thanks, Mom.  I love you.

August Approaching

As we are just a week from would have been Samuel's first birthday, I find myself thinking a lot about this time last year.  I remember how on July 20th Bryan and I went on the NICU tour at our hospital, so we could get a glimpse of what to expect in the off-hand chance the doctors had Samuel's diagnosis wrong, and he would need to begin life there.  The really funny part of that tour is that though I was 36 weeks pregnant (and measuring 43 weeks), I was pushing Bryan around in a wheelchair!  He had hurt his back and just that morning had gotten some pretty heavy meds and shots to enable him to make the tour.  I thought it was hilarious to be pushing him around on the tour, but I think he mostly felt emasculated.  I know he would much rather have been pushing me.  How I wish we had a picture of that day!  We got a lot of funny looks from new moms and dads.

On July 21st, I had one of my bi-weekly appointments, and Samuel was not cooperative.  He was not moving much, so my OB sent me to my perinatologist for another appointment.  There, Samuel was completely uncooperative.  He wouldn't move for the world, and my amniotic fluid was up even more.  The ultrasound tech later told me that she was pretty scared.  She absolutely could not elicit movement from Samuel.  So, the doctor sent me to the hospital for overnight observation.  We were prepared to meet Samuel 5 1/2 weeks early, which would have been much too early for a heart baby.  I had about 3 hours of continual contractions while there, but nothing came of it.  And Samuel was quietly moving again.  The next morning, after another ultrasound, we were released and relieved to be going home.  My OB told us that, in all likelihood, Samuel was going to make his appearance sooner rather than later. 

I don't remember much about that next week.  I know we continued to take our 2.7 mile hilly walks through the neighborhood, and I know I started praying for an August 1st birthday.  I am quirky about numbers and love odd ones.  I especially love birthdays on the first or thirty-first.  My birthday falls on a first, as does Joel's, and I thought it would be so cool if Samuel's did too.  In fact, both Caleb and Joel were born on my preferred birthdates.  (They also both came on their due-dates.)  I am often amazed that God has humored my quirkiness and given me something as silly and triffling as preferred birthdays.  He did it again with Samuel. But I will save his birthday story for later, in case I feel like writing about it.

As a family we've been talking about what to do for Samuel's birthday.  Caleb suggested making cards, having a cake, and spending Samuel's would-be birthday money on people in need.  That's exactly what Bryan and I had been thinking.   Sometime this week we will all shop together to bless others through Samuel's life.  We're also planning on going to Egleston as a family on Friday.  The boys and I will bake a lot of cookies to take to the doctors and nurses, and we're writing a letter to the CICU parents to go with a basket of prepackaged goodies for them.  We will stop and drop off some cookies for Dr. Videlefsky, too.  I am looking forward to going, but I am also nervous.  We haven't been back since December, and going in the summer will be a pretty major flashback.  I think it's a good thing for us to go -- and even wise, but part of me is certainly anxious about it. 

Tonight as I was tucking Joel into bed, he asked me, "Momma, do you think Samuel will have a jumpy house birthday party in Heaven?"  Joel's birthday party this year was at a Jump Zone with tons of inflatables, and he loved every minute of it.   I love that Joel imagines Samuel having a party as fun and wonderful as his was. 

Last week Caleb asked me, "Mommy, am I always going to miss Samuel?  For my whole life?"  I think that question sums up what I've been feeling lately.  As we near the one year markers, I don't feel a sense of relief that this first year is nearly behind us.  Instead I feel the vastness of a lifetime without Samuel still ahead.  I told Bryan I wish I could skip August altogether and go straight to September, but more than having a tough month ahead of us, we have a lifetime of missing Samuel to go.  Before Samuel's death, I never longed for Heaven, but now I do.  I long to be made whole again, and I long to be with my almost 1 year old.  I got choked up today rocking Joel in the glider after his nap -- something he hasn't let me do in a year and a half or more -- thinking that I would have spent this last year rocking Samuel in it if he had been healthy.  And then I thought about how if Samuel was alive, I would have a 5 year old, a 3 year old, and a 1 year old.  I wish I could say that sentence when introduced to someone new instead of fumbling around and wondering how to handle the situation, instead of acquaintances introducing me as "This is Kathryn.  She has two boys" and me feeling a knife in my heart.  I wish it was as wonderful as having three boys who are 5, 3, and 1.  But that's not our story.  And we have a hard month ahead of us.  In a week, we will be in August.  In a week I will be in the place I have dreaded for 11 1/2 months now.  And somehow God will see us through it.  I already know He will be faithful to carry us through August.  It's a good thing because I definitely couldn't do it on my own.

A Turbulent Week

It's been a hard week for us grief-wise.  There have been a lot of factors, but for me the biggest one came Wednesday morning when I found out that I'm not pregnant this month.  It was pretty devastating to me even though I had suspected it was the case.  That morning I had plans with a friend and her boys, so thankfully the first half of the day passed without too much ache, but once we got home, I cried for several hours straight.  I couldn't seem to stop the tears, and they just kept coming and coming.  I think I had stored up a lot of hope in the months we were told to wait on getting pregnant, and when my hopes didn't come to fruition right away, a lot of the disappointment I had held at bay came swooping down on me.  I kept thinking how very much I miss Samuel, how very much I wish he was here with us and trying to get pregnant with another baby wasn't even on our radar.

A major component of my sorrow is August's ever-growing proximity.  Even the day Samuel died, I pictured August 2010, and I imagined myself pregnant.  At the time I imagined myself very pregnant -- due in September.  As time went by, that picture had to change, but always the tangible hope and comfort of the month was the baby growing in my womb.  This week showed me that my picture will not come to pass.  I will face Samuel's birthday, two weeks from today, with an empty womb and empty arms.  I have never thought another baby would replace Samuel in any way, but it would be new hope, a tangible image of redemption.  Knowing that August won't offer that picture of the future was nothing short of devastating.

Honestly, it was a wretched day.  I cried sitting on the bed, typing on the computer, tucking my boys in for naps, cleaning the house, making dinner, eating dinner, driving to our counseling session, through our grief counseling, and everywhere in between.  It was the worst day I've had in five months.

Since then I've asked myself why I am so deeply sad about not getting pregnant this month.  I think the bottom line is that I'm truly scared God's answer isn't just, "Not this month" but, "Not ever."  I've learned that God doesn't have to answer "yes" to my pleas for good things.  He didn't save Samuel, and He doesn't owe me for that.  He doesn't have to make it up to me by blessing us with a healthy child from my womb.  If He ever does grant us another baby, it will be pure grace -- an undeserved blessing from His abundant love and care.  I can't earn a baby.  I can't endure enough heartbreak to tip the scales in my favor.  There are no promises of more children for us.  God could say no to our requests for another child, and that terrifies me.

I've been revisiting Psalm 86 this past week, and one verse keeps jumping out at me.  Verse 12 says, "O Lord Almighty, happy are those who trust in you."  I have not been happy in the past week and half as I've feared the onset of my period and then been crushed by its appearance.  And I've been asking myself, "Am I trusting God?"  I think the answer is yes, but I am not resigned to accepting His answer if it's, "No, Kathryn, I will not give you more healthy children from your womb."  I trust Him to be good and faithful and present.  I trust Him to give me what I need to face even the worst of outcomes -- even another baby who dies.  But I don't want that.  And I desperately want more children.  I am having a hard time joyfully moving forward into the unknown when what's ahead could be more heartbreak.  I will walk whatever road God gives us to travel, but I am having a horribly painful time surrendering my dream of another baby (babies!) to Him.  I know He can say no, and I don't want to hear that. 

I'm not really sure how to change things, but I know I cannot face an indefinite number of months with this intense of a rollercoaster and this deep of a pit when I don't get pregnant.  Something has to change.  Something in my heart has to be more willing to lay down my vision of our future.  Something in me has to say, "Ok, God.  WHATEVER it is that You will, I accept it."  I'm not sure how to get there, but I am confident I cannot endure more months like this one without seriously taxing my own well-being and my family's.  I covet prayers in this.

And as August approaches, I confess I find myself trembling in my boots.  Its dark cloud has already cast a shadow over me, and I'm afraid I'll be sucked into its eddies and stay submerged for the duration of the month.  I used to think that once people made it past the first year without a loved one, they could breath a sigh of relief.  I would think, "Phew!  The first year is over.  I'm glad that's behind them.  Now life can get easier."  How absurd.  Now that I am grieving, when I think about our one year anniversaries approaching, I don't feel like a significant amount of time has passed.  Samuel still just died.  It wasn't yesterday, but it was so recent.  And so what if a year is nearly behind us.  That just means I still have the rest of my life without him.  It's no different than it was 6 months ago.  Life is still devoid of Samuel.  We are still grieving.  It is still hard, so hard.

So, needless to say, it's been a tumultuous week.  And I have a feeling harder weeks are yet ahead.  Oh, Jesus, hold us close and comfort us as only You can.  How we need You!

An Angel Story

A couple of weeks ago, the boys and I went to see my friend, Candice, and her daughter, Susan.  We met in the CICU at Egleston last August.  Susan has hypoplastic left heart syndrome (HLHS) and has had numerous surgeries in her two and half years of life.  When our paths first crossed, Susan was having the final surgery (called the Fontan) in a series of three heart surgeries.  Susan's bed was next to Samuel's for several days, and I think we first spoke to Candice and Mike in the hallway outside the showers late one night.  Though we'd already been at the hospital for 3 weeks, we were newbies, and Candice and Mike were veterans.  We became friends over the week our time at Egleston overlapped.  Susan did quite well -- despite a few scares -- while Samuel was in the hospital, and a few days after we met, she moved out of the CICU and into Step-Down, where patients in less critical condition stay.  Because parents can sleep in Step-Down rooms with their child, we didn't see Mike and Candice for a few days.

The night before Samuel died, a nurse came to our CICU dock and said that Susan was back in the CICU, and her parents wanted us to know.  I immediately walked down to their dock, gave hugs, and talked for a little while.  By the next morning, Susan was back in Step-Down, and I didn't see her or her parents again until February.

When I went to Candice's house a couple of weeks ago, she showed me a book that Susan loves to read.  It's about guardian angels who surround and protect a baby throughout the day.  In the book, the angels are babies too.  After I read the story, Candice told me that she's had something to share with me since August, but she didn't want to do it over the phone.
 
Before Susan's Fontan procedure, she had worked hard to gain a lot of abilities like walking, sucking, and talking.  Her parents didn't know how long it would take to regain those after surgery.  One morning in Step-Down, Susan woke up, looked over her shoulder, and said, "Hi Baby!" -- her first words since before surgery.  Candice looked where Susan's eyes were focused and didn't see anything, but she was grateful that Susan had spoken.  A few days later, Candice learned that Samuel had died the very morning Susan woke up and said, "Hi Baby." 

When Candice told me the story, I started crying immediately.  I've only told the story once, and that was to Bryan.  I could barely get the story out, I was crying so much.  I don't know how angels work or what exactly happens upon death, but the thought of Susan seeing Samuel and greeting him with a smile is precious to me.  At the moment I can barely see the computer screen through my tears.  Far be it for me to say Susan didn't see Samuel on his way to Heaven.  And Susan's picture of Samuel, of a baby who would elicit smiles and warrant a greeting, is so far better than the picture I will always carry of Samuel at 9:30 on Monday morning, August 31.  The Samuel I held was bloated, distorted, decaying, and so clearly not the real Samuel.  My attachment to his body ceased almost the moment he died.  He was no longer my Samuel.  It was utterly clear to me that he, the soul of my son, was no longer there.  I was holding an empty shell.  I love the thought that the real Samuel, the beautiful soul of my baby, was visible to another baby in the hospital, and that he was already looking whole and restored and redeemed.

When Candice showed me Susan's guardian angel book, she pointed out the baby angel that Susan always points to and says, "Baby."  It's a little boy with light brown hair and brown eyes.  I looked at him and thought, "Samuel could look like that.  I wonder if that's what he would look like now, at 11 months old."  Even that little illustrated picture of a guardian angel baby was a gift -- a little picture of what my Samuel would maybe look like.  I am grateful for the little gifts along this journey of grief -- for the moments of hope, the glimpses of clarity, the breaths of joy, and the pictures of what might be.   And I'm glad that there is so much we don't know and can't explain, for the mysteries of God that make us pause in wonder and adoration.  I am thankful for Susan's, "Hi Baby."

Shells and Souls

After I went to the cemetary with Caleb and Joel last week, and Joel expressed so much confusion about Samuel's body being buried but his soul being in Heaven, I decided to ask Judy, our grief counselor, for some wisdom.  That was a good decision.  She  recommended we use a shelled peanut to help explain it.

So, the next night Bryan and I took Joel to eat at 5 Guys Burgers and Fries because they have bulk peanuts there.  We got one of the peanuts (after Joel has already consumed an inordinate amount of them) and gave it to Joel.  We told him to look at it and asked him if you eat the shell.  He said, "No.  It's yucky."  We explained that the peanut shell is like our bodies.  It's the outside of us, but inside is the really wonderful part, the part that really matters.  We had him break open the shell and look inside and said that the inside of the peanut, the yummy part, is like our souls.  It's the part of us that is precious.  Our soul is the part of us that loves, laughs, grieves, rejoices, and feels.  The shell, our bodies, is what dies.  But it's just the part that covers our peanut, our souls.  Our soul doesn't die.  We put the shell in Joel's hand and said, "This part of Samuel, his body, is what's buried under the dirt in the white box."  Then we put the peanut in his hand, "But this part, Samuel's soul, the really wonderful part of Samuel, is what is in Heaven with God and Jesus."  He seemed to really get it.  When we asked him questions about it, he was able to answer and seemed happy with our explanation.  A few days later I went through it with Caleb too.  He smiled through the explanation and seemed to appreciate the visual demonstration of Samuel's body and soul.

I am grateful for Judy's wisdom and counsel.  I am so thankful for support in this season of our lives.  There are so many things about grief that I don't understand, that I don't know how to approach or explain, and I am thankful for Judy's knowledge and help.  And I am thankful for our church that gives us money to go to counseling.  We are blessed indeed.  Thank you, Jesus, for the care we have as we grieve Samuel and for grieving with us and we miss our baby boy.

An Interlude of Pictures

We just got back from the beach with Bryan's family, and it's time for some happy pictures.  We had a great time with Kathy (Bryan's step-mom), Erik and Jen (Bryan's brother and our sister-in-law), their boys, Charlie and Grady, and Marta and Adam (Bryan's sister and our brother-in-law).  One morning Bryan did pancakes for the kids, so I will post those as well as some I have neglected to post recently.  We didn't have internet while we were away, and I was surprised at how shocking it was to be unconnected, but in many ways it was nice to be unplugged for awhile.

Ashoka from Star Wars: The Clone Wars

Kit Fisto

Elmo

Diego

Obi-Wan Kenobi 

I love, love, love this picture of four cousins.  I wish Samuel had been with us and in this photo too.  The boys are 5, 4, 3, and 2.  Samuel would have been 11 months old had he lived.

Me and the J-Bear

Four grandsons with their Grammie

Four buddies

At the beach

Bryan and Joel jumping waves

Sandy-hands Caleb

All of us making crazy faces, obviously.  :)

Apinis siblings (By the way, in case you don't know us personally and wonder how to pronounce our last name, it's "Ap-" as in apple, "-in-" like "in and out," and "-is" like kiss.)

The Apinis ladies.  We're out numbered.

I love this sweet picture of brother love.  Makes my heart happy.

The men with Kathy

And because I'm way behind on posting pictures, here is Caleb's Chewbacca birthday cake that Bryan decorated for his birthday party.  We had 16 little kids over for the party, and it was madness -- but oh, so fun!

Phew!  That's a lot of pictures.  Thanks for humoring me and letting me post a slew of photos.  I love to have a record of our life alongside our grief on this blog.  It helps me remember all the joyful moments in the midst of really hard and heartbreaking ones.  I'm so grateful for a week with the Apinis family, whom I love so very, very much!