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)