Some days are just harder than others

Who am I kidding? They’re all hard in one way or another. Today is particularly hard for some reason. As I drove home tonight the sun was setting through the clouds, you know the kind where the sun’s rays shine out from behind the cloud and illuminate the sky so beautifully. It has always reminded me of God…his glory shining through. Now? It reminds me of Declan. It always make me smile because I feel like he’s smiling at me. I always smile back and say hi.

Today I was treated to a few beautiful views and my thoughts were awash in Declan. Smiling back and forth, we were…enjoying a little quiet time together. Our little stolen moments.

The clouds then overtook the sun and my little visit was over. I’ve come to enjoy and look forward to these moments, they make me feel like we’re connecting in a special way. Our little “sun chats”. I got sad today after it was over and, frankly, a little mad. I’m talking to clouds and rays of sunshine instead of my sweet boy. So unfair.

So I’m having a little pity party for myself and Declan tonight. Feeling so very cheated…feeling so intensely the loss of this amazing little life. So much left undone, so much left unknown. What would his voice have sounded like? When would he have walked? What would have been his favor color? Would he and Cole have developed their own special “twin” lanugage? Too many unanswered questions, a life not lived. A life taken far too soon.

The sunsets I enjoy with Declan are not at all dissimilar to his little life…both shining and beautiful works of God. Pure in their intense beauty and never long enough to absorb all of its beauty, all it could be. But long enough to know you’ve witness something special, something you wish you could hold onto forever…like the tiny little hand of my sweet Declan.

3.09.10

I’ve been thinking of Declan all day today, as I do every other day. Today my mind keeps bringing me back to this image of Declan.

So small, so completely unaware of what was happening…where his life’s path was leading him, leading our family. I was introduced to a hero that day, my son. Over the days, weeks and months to follow we would come to see what a true hero is, how brave even the littlest human can be.

For today though I’m remembering my sweet baby, looking so small in that big bed. One of the indelible moments in my life.

A mother would do anything to save her children

I was watching the news this morning and saw an interview with the woman who was caught in a tornado last week. What is remarkable is she used her body to shield her 2 young children (6 & 8, I believe) as the tornado passed over her house. As her home was swept up into a pile of sticks around her, she held fast to her children. In the end, her children were saved by her shielding them. Her children were unharmed. Not a scratch…she lost a part of one leg and a foot.

During her interview she remarked about how instinct took over and said something along the lines of a mother would do anything to save her child. (For all you Dad’s out there, I know this is not a trait unique to women…gotta give props where props are due!) As I absorbed her statement, I was struck with an image that I have been wrangling with all day. We felt the same instinctual protective air rise around us when we learned about Declan’s cancer. This is where my image comes in. You have this intense need/want/desire/will (you get what I mean) to protect but as you go running towards your child to wrap them up in your protective arms; you run smack into a glass wall just inches from your child. You can’t reach them to help. You are helpless stranded on the sideline wanting to desperately to make it right but knowing you cannot.

It wasn’t just Declan either. It was Will, Brady and Cole. How to protect them from having to know this horror at such a tender age? How to give them hope so fear does not envelope them when they visit their brother, so they can be boys…brothers, together again if only for a few hours until it’s time to go.

It was a daily struggle to make decisions against your will to protect because in attempting to protect and save a life, the decisions were made against our instinct to protect. Please know I don’t mean we regret ANY decisions we made, we do not. What I mean is the world you are tossed into keeps you at arm’s length from the nature of instinctual protection…in order to protect, you have to harm or agree to treatment that has an incredible ability to hurt while it heals. The glass wall…SMACK!

There are so many levels of pain felt by a family dealing with childhood cancer. I was reminded today of what it’s like to have your instinctual ability to protect your children from harm pulled away from you by the biting and intensely strong winds of a the childhood cancer tornado. Each new bit of horrifying news, the treatments, the unexpected side effects, the crying you can’t fix…a piece of splintered wood, tearing at you as you attempt to protect your child from the unimaginable horror surrounding him. Hoping he will come out unscathed…knowing you will never quite be the same again, whether he does…or God forbid, doesn’t.

A long time overdue

This past week I did two things I have been promising I would do for a long time. Donate platelets and give back to the NICU.

I have donated blood but never regularly, and never platelets. I didn’t understand how vitally important both are to health and welfare of those in cancer treatment or simply to those in need of the life giving and saving properties. I mean who here can go a few minutes without some good old fashioned blood pumping through their veins? Exactly. Until you’re faced with the reality of what that can mean to yourself or in our case our sweet Declan, you probably don’t give it much thought.

Prior to Declan getting sick, I really didn’t realize how important the blood supply is to people with diseases. By that I mean, I thought of blood being used more for accident victims…yes, I’m a sad product of lots of tv…to replace blood lost due injury or e gads! malicious wounding!

In the hospital I realized just how much more it is used to help support those with life threatening diseases. For cancer patients, the very treatments used to help cure are extremely harsh on the body. Blood and platelets transfusions help replace what is killed off during treatment and strengthen those receiving its life giving gift. It was truly amazing to watch color return to Declan’s kissable lips and his energy return almost instantly after receiving his transfusions. I told myself I would give back. I would make it a point to pay forward what someone had done for my son. I did so this past week. Geez, Sherri…why so long to get there? It hasn’t been for lack of want but life always seemed to get in the way. Ironically, the very reason to donate is the reason it took so long. Simply put, life.

I wondered how I would handle myself, knowing what it meant to me and my memories of Declan. I was sure I would dissolve into a hole of missing Declan…wanting to desperately to be giving for him, not in memory of him. I was feeling a little of that emotion start to take its hold on me when I was waved into pre-screening room by this woman with a brilliant smile that lit up the room, Susie. My new dear friend, Susie. We started the interview and she commented on my necklace with Declan’s picture I wear…and then she said, ‘Is that Declan? I prayed for him and your family…I still do.’

I have to say this has happened a few times to both Stan and I; it is singularly the most humbling and heartwarming statement. I care about your son and your family…I remember. It is where again the words ‘Thank you’ fails to truly convey the depth of gratitude.

It wasn’t just that, I would have liked her anyway. She was warm and friendly. The fact that I felt Declan’s hand in helping his Mommy through was a plus. :) (Susie, I think your sweet boy was looking out for you by bringing us together. You see, Susie and I share another bond, she has also lost an infant son. Different circumstances but it doesn’t matter.) She made the experience wonderful and something I am know will become part of my life.

Second to blood donation was giving back to the NICU and the folks who supported Declan and Cole in the first weeks of their life. In the life of a NICUer, our boys were very fortunate. Their stays were not extremely complicated…it didn’t feel that way at the time but in learning more about other’s experiences, we were very blessed.

The NICU is an amazing and scary place all in the same breath. There are these amazing little humans so tiny…fighting. They are supported by the loving nursing staff, they are truly amazing in how they work with the babies and then gently work with the frazzled and nervous parents…scared and unsure of what to do and how to manage the situation they find themselves in. No one is really prepared for that world; and the nurses…not unlike the nurses on the Hemoc/Oncology floor…are angels on earth.

I still have the two tiny little Ty beanie bears, the blankets and name tags for Declan and Cole, lovingly given to them by the NICU. This weekend I took part in a volunteer event to make blankets and name tags to go above the isolettes in the NICU. Again I was a little nervous when I got the hospital…different hospital, different memories so I wasn’t sure what to expect. Again, I was met with smiling faces and a warm inviting atmosphere. There was a lot going on so it allowed me the opportunity to get right with my emotions and remember how the things we were making brought me such joy. You mean this lovely blanket is for us to take home with us? As I worked on the isolette name cards, I remembered those days and the wonder we felt over our boys. 33 weeks but fighting strong. Oh my, how awe filled and prideful we were of each accomplishment. It was a wonderful remembrance.

I met another Mother who lost one of her twin sons. We shared an amazing conversation remembering our boys and just talking to someone who “gets” it, especially the twin thing. I shared with her my desire to want learn to sew so I could also pay forward the blanket we last held Declan in; the one I now sleep with every night…it just somehow makes me feel closer to him. I kept thinking while I was there about how great I felt helping and how amazingly comforted I felt on the receiving end.

In the end, I worked up the courage to bring some blankets home with me to finish. (Stop laughing…those who truly know me are heartily laughing at the thought of that I’m sure!) My Mom, God Bless her…it only took 45 years for her to get me behind a sewing machine…helped me and I am proud to report I completed my first blanket tonight. It will be the first of many I know.

I hope you never get a blanket I make or the blood and platelets I give but I will continue to do these things to honor Declan and to pay forward the small acts of kindness which mean so much to us now.