Thursday, January 22, 2009

True Love

Sleep is eluding me yet again tonight.... I woke up about an hour ago in the middle of a dream. In that dream we were preparing to lose Eli. I am so glad that I woke up; I can't imagine surviving that loss again, even if it was just in a dream. You should only have to say those kind of goodbyes once; it would seem that any more than that would destroy the soul.

Today I realized how special the love between a parent and child really is. I have been honored to hold two other babies over the past few days. It was so nice to cuddle and love on them; they were both quite adorable. However, the emotions I felt while holding them were so pale in comparison to those I had when holding Eli. The contrast knocked me for a loop I guess. I always knew I loved my little man, just not the extent of that love. It is like nothing else in this world. Unless you have held your own child in your arms, you won't know what I'm talking about. That kind of love changes you. I watched myself change so much while Eli was in the hospital. Perceived threats brought out a primitive need to protect, much like that of a mama bear with her cub. I turned into a strong person, one willing to stand up and say No; not just one No, but no time and time again. It would have been a strange sight to many of those who know me; sometimes I did not know myself.

Yesterday was one of the numb days. I didn't cry much, didn't laugh much, was just here, breathing. Some days breathing is a big accomplishment, getting out of bed a chore, showering an impossibility. Each day brings a new set of challenges, new feelings to overcome and work through. A very special friend of mine spent hours upon hours putting together a video for us using our pictures and home videos. We watched it last night and it was beautiful. He managed to capture so many of the fun moments and happy times. It was bittersweet to watch it; we laughed and cried. It will be a special memory we can come back to on those tough days, on days we just need to see his smile, or on those days when we feel like his memory is starting to fade.

One thing the video brought to my attention is how the SMA was apparent even in the early beginning. Of course we had no idea at the time, but I noticed over and over how many signs he had long before we had any idea something might be wrong. Holding and watching other little ones was a shock to me too. I always knew he was way behind in development; I just never realized how far. It makes me sad even now that he was denied movement and strength; that he was never able to do all the things babies do, all because of a loss of a gene in his DNA. I can't even strike out against this killer; it is too microscopic for me to even see; yet so large that it was able to steal away part of my heart and soul, large enough that it robbed me of my son, plus any siblings he may have one day had. How can something so minute take away things so great?

I have lost much of the strength that has carried me through most of this journey. The resolve to do all the great things to keep his memory alive is a little weak right now, but still there waiting to come back out. I need time to grieve, but I can't let myself get stuck there for too long. We received more donation acknowledgements from the Ronald McDonald House yesterday. There was another one in there from someone I didn't know personally. I hope that means that Eli has touched some of you; that his memory and story compelled you to reach out and help those that helped us. Thank you for that. Thank you so much.

7 comments:

Anonymous said...

Rita and Jason,

I am thinking about you and praying for you.

Emma

Anonymous said...

That is so wonderful that you have a video memory of Eli. It is something you will definitly be able to look to in the hard times, and it will keep his happy memory alive.

SMA is a very hard killer to be mad at. It's not like in an accident where there is a face to the killer. That almost seems to make it easier when you can look at a person or a picture and think you are the reason I lost someone. When it is a gene, what do you do? It was such a sudden diagnosis too, and even though you said you could see the signs earlier looking back at the video, babies are all so different, it's impossible to tell what is going on, it's just not fair.

You said that you wish Eli could have had movement and strength, but from what I saw in his pictures, he never noticed, never missed it. As a momma bear you always want what's best for you cub, but I just want you to remember too, that Eli didn't know he was denied development. What Eli knew and cared about was love. Love from his parents, his family, his friends. He was given so much love, so much care, tenderness and true devotion from two very tired, stressed, but constantly loving parents. He had so many smiles, grins, and his eyes were always alight in his pictures. I know he had his cranky moments, lol we heard about those from you Rita! But in the end, he was happy to be here, happy to have parents as special as you and Jason, and happy to be given unconditional love.

Krista

Anonymous said...

Rita,
I met you at the resturant with Suzanne. I am Allison. Suzanne gave me a link to your blog. We lost our 2 year old in a car accident. The loss of a child seems to much for one to bear, the pain the worst I have ever felt. The pain so real it physically makes your body hurt. Just want to let you know I understand a litte of what you feel, if you want to talk I am here. I remember that the 1st month was the worst. couldn't even put thoughts together in my head. You just literally survive, although at times that is the last thing you want. I just wanted the world to stop..... I wanted the world to acknowledge his life.... I was angry that people went on... even those I didn't know. There is a book I am looking for that helped me. I hope to find it for you. Just wanted to let you know I am thinking of you and keep you in my prayers. Allison

Meg said...

Rita,

You guys are on my mind. I've been reading your words every day, and my heart aches. I can't imagine.

One thing I know is that Eli is continuing to live through you. Eli was a gift, and you are a gift, too. Truly.

Love,
Megan

Anonymous said...

Rita,

Please know that anyone who knows any little part of your story has been touched and changed forever. Every day I hold Nikola a little tighter, play with him a little more, I am a little more patient because of you and Eli. Your story is one of pure, unconditional mother's love. The most beautiful love there is. And it is so unfair what you have lost.

And by the way the no music rule applies to the blog as well. Just kidding:) It's a beautifl touch.

I love and miss you guys. Hope to see you soon.

Brandi

Anonymous said...

Rita,

Please know that anyone who knows any little part of your story has been touched and changed forever. Every day I hold Nikola a little tighter, play with him a little more, I am a little more patient because of you and Eli. Your story is one of pure, unconditional mother's love. The most beautiful love there is. And it is so unfair what you have lost.

And by the way the no music rule applies to the blog as well. Just kidding:) It's a beautifl touch.

I love and miss you guys. Hope to see you soon.

Brandi

Anonymous said...

I just wanted to let you know that I am thinking of you, your family and your precious angel today.