Opening Confessions

I’ve started and deleted this first blog entry a number of times. After each deletion I stand up, walk into the kitchen, open the snack drawer, and break off a piece of chocolate. It’s not even good chocolate; not the bittersweet dark chocolate I crave, but a generic waxy chocolate bar that should have been tossed months ago. I keep it for emergencies, like this one—the initial post of my ClubMom blog.

I sit here at the computer with glee in one pocket and fear in the other. Excited to have a public forum for my words. Terrified to have a public forum for my words. How do I begin? What if I have nothing to say? What if I can’t write down my feelings and thoughts? What if no one cares about our story? What if ….

 What if my son never walks?

You see, this blog is about my son, Elias; but since I am the one writing, it is also about me, his mama. It is about my hope and fear for this uncertain life of ours. It is about living far from family and friends in the Great White North with a child who may, or may not, have life long disabilities. It is about the miracle of my son’s survival and progress. It is about the loss of the healthy child I expected

This is not the story I wanted to write; but now that it is mine, now that I’m two years into it, I can’t imagine an alternative plot.

If you haven’t already been following our story, let me catch you up with the shortened version. My son Elias arrived four months early by emergency c-section with an Apgar score of 0. No heart beat. No breath. He weighed one pound twelve ounces and underwent heart and brain surgery before he weighed two pounds.

 

What our first family photo doesn’t show is the worry lines around our eyes as we lay our hands on our tiny son. It doesn’t show how much we ached to hold him.  Or our desire to somehow go back in time, to fly around the earth until we reversed its rotation, so we could save our son from relying on machines, doctors, and nurses to keep him alive.

Fast forward twenty seven months and here I am sitting at the computer hoping for a few more moments alone to finish this initial post before Elias crawls backwards out of his room and says, “Mama, up…up… MAMA UP.” Those lines around my eyes have deepened but so has my love for my son; so much so that I wouldn’t trade him in for a healthy child—unless of course that healthy child was him.

But to Elias every doctor’s office is just a playground with tables to climb under and chairs to pull up on, just another place to explore. We live in a land of bitter sweet extremes, from long winter nights to endless summer days. There are days when I stand shivering in the shadows of the mountains with no energy to climb. And there are days when the view from the peak is too beautiful too describe. But I promise to try.

 “Mama, up…up… MAMA UP.”

Comments

[cat fitzgerald]

Yay! I am soo glad that you are up and running! With pics! xxx cat

[Janeen]

What a lovely first post! Welcome to Club Mom blogging.

[Susan]

So glad you can write about Elias. He is an inspiration to us all.

[Krystal Kompkoff]

I can't wait to share this with my friends! This is great :)

[tracey]

Wow and waaaaaah. What an incredible woman you are and what an amazing son you have.
I can't wait to keep reading.

[amy]

I am so glad to have found you. My kiddo also came four months early and it is so nice to read about a family similar to ours. Thanks for sharing your story.

[EleanorS]

I understand how you feel I have had so many of those days, I have had 3 premature babies, James was born @ 23 weeks, Maddie, 25 weeks and Jeremy, 25 weeks. I DO understand. I lost James after 9 days, Maddie for all intent and purposes she's healthy, she does have ADHD and vision problems, we don't know the long term effects of the medication to close her PDA she was given alot more than the required amount because of her size and her severe respitory issues they did't want to her to undergo heart surgery. And then there's Jeremy my absolute biggest challenge, he has severe vision problems, cerberal palsy, autism, breathing issues and a feeding tube. Please know that you are not alone even when you feel like you are, if you ever need to vent or chat please e-mail me. I feel like I have had medical training some days because of all of this, do you feel the same some days?

[sweets5260]

He is truly a miracle, and just reading your post brings tears to my eyes. (Happy ones!)

[f aaerden]

Lovely boy and Great blog - you're doing great, littlt buddy!

[Patricia C.]

I adopted my twin granddaughters. They were born at 28 weeks. Patricia weighed 2lbs. 11 1/2 oz. Elizabeth weighed 2lbs. 11 oz. They were very small. We could not touch them or stimulate them in any way without hurting them. Both girls were placed on feeding tubes, breathing tubes, apnea monitors. They received several transfusions. They were both treated with medicine for PDA. Elizabeth's closed but Patricia's didn't. The both had a right ventrical bleed, #2. It was a miracle that they survived. Patricia had surgery for pyloric stebosis and also had a procedure to close her pda. The girls have given me great challenges over the years. They hit their milestones later then most. Their behaviors were (and are) extreme. By the tine they were three, we knew they were going to need special services. At age 3, they started play thrapy. At age 6, they were diagnosed witg ADHD and ODD. They had to play around with the medicines many times to try and get them right. At age 9, they were diagnosed with bipolar disorder. Patricia has been hospitalized once in the children's psyche unit. Elizabeth has bee hospitalized about 6 times in the child psyche unit. Most times they have been in great need of medicine management. They are both extremely bright girls but are in special clasases because they cannot function in big groups. They are now 12 and going into the eighth grade. They are a challenge and a blessing. I love them and could not ever see life without them. If you would like to here some of the specifics of their growing up, pleas e-mail me. Know that you are not alone. Knowing that I am not alone is great for me. Good luck,

[Jo Schaffer]

Tears in my eyes already. My son is 2 and a half now and has begun to stumble around without his walker...so much we still don't know- but as heart wrenching as it is- that is also how beautiful the experience has been. I feel you.

[Malissa]

I waas recommended this web site by my cousin. I'm not sure whether this post is written by him as nobody else know such detailed about my trouble. You are wonderful! Thanks!

[carpet cleaning machines]

Hey! I know this is kinda off topic however , I'd figured I'd ask. Would you be interested in exchanging linkks or maybe guedt writing a blog post or vice-versa? My site goes over a lot of the same topics as yours and I believe we could greatly benefit from each other. If you're interested feel free to send me an e-mail. I look forward to hearing from you! Excellent blog by the way!