Don't Leave Me

How long before your memory fades from my mind? How long before you fade from the mind of others? You stay alive in my heart, but what if I start to forget you? Please don't leave me, sweet boy. Let me forever remember the smell of your head and the look of mischief in your eyes when you smiled.

Let me have memories of you laughing and playing. Never let me forget the pain we went through.

So many have gone before, and and so many more have joined you in Heaven. I hate to hear someone else has earned their wings, but it's happening over and over again. It hurts.

I miss you. I love you.

Thankful

Today was a most thankful day. I'm thankful for being able to watch the Macy's parade with my boys, even if I fell asleep after the 4th balloon. I'm thankful for two families that love me and love my boys with all of their hearts. I'm thankful I have a warm bed to sleep and a roof over my head to keep out the rain.

I'm thankful I can complain my feet hurt after working 10 hour shifts, because I HAVE a job to be thankful for. I'm thankful for my cats and that they are good mousers. That's really important when living in the sticks.

I'm thankful for friends that don't care if the house is a little messy or if I don't have anything to offer them out of the fridge. I'm thankful to have Internet access to be able to keep up with the friends I can't be with. I'm thankful for loud music that keeps me motivated to work.

I'm thankful for my kids. My beautiful, beautiful kids. I'm thankful for their fathers that gave them to me. I'm thankful for my health and the health of the ones I love.

I'm thankful for justice for those that truly deserve it. I'm thankful for peace for those that deserve it even more.

I'm thankful I am loved. Thankful I am blessed.

Life Update...And Being Thankful

Life has been life lately, I guess. We all have our own issues that we deal with. Halloween was celebrated a day late for us because of my work schedule and because the day before I attended a beautiful wedding and our entire family was just exhausted. So on Monday night, we carved pumpkins with grandma and had a few pieces of candy. I've promised them each their own bag when I go grocery shopping and can buy it on clearance.

I spend most of my days the same. I get up at 7 and put the boys on the bus and then for about an hour or two I have some quiet time with my cats. I catch up on my email, blog, maybe watch an episode of "Glee". Around 9 I head to bed and sleep until around 3. The boys get home at 4, then I'm off to work. It's about a 30 minute drive. They hang out with dad for the evening while I work, then sometime around midnight, I'm back on the road for home, getting home close to 1 in the morning. I pour the kids in bed and start a load of laundry. While it's washing, I cook dinner and watch something on Netflix while I update Facebook. Around 3, I toss the clothes in the dryer on my way to bed. Three hours later, I'm back up again to put the kids on the bus and start over. It's a ridiculous schedule, but we do what we gotta do.

The holidays are coming up. Its a weird time for me. Growing up, Thanksgiving was all about the parade, having family over, and eating for days. When I became an adult, it stayed pretty much the same until Tommy was born. The next two Thanksgivings would both be in the hospital. The first one recovering from open heart surgery and complications, the second one while he battled the flu for two weeks. The next year my life would be upside down. I was back in KY with my family, but without my baby boy. I had so much to be thankful for, and yet, so much reason not to care. I went through the motions, but it stung watching the country "be thankful" when all I wanted was to hold my baby, even if it meant in a hospital.

Last year was a little better. I missed the parade for the first time since I can't remember. I guess my priorities have changed. I shed the old me and was reborn. This has been a year of self discovery for me. I'm learning to be thankful again. Mostly, I've been learning to be myself.

A few months ago, I started wearing tee shirts with silly sayings on them when I went to work. People love to come in and see what shirt I will be wearing that day. I also have pink streaks in my hair. They're growing out, so I plan to redo them in the near future. I do these things because life is too short not to enjoy every moment. Every emotion I have now seems intensified. I laugh louder, cry bigger tears, fight harder, love stronger. The way I live my life is a tribute to my son. If he could spend his entire life celebrating the JOY, then so can I.

If I am thankful for anything, I am thankful for his life. Thankful I was (and will always be) his mom. Thankful for the joy, the love, the tears and the strength he brought to my life in his short time with me on this Earth. Thankful he taught me to be who I am and to live life with no regrets, just lessons learned. To know that tears are cleansing, and that he's always with me. Thankful for the perfect love a little boy named Tommy taught me and the rest of the world.

Looking Back

I have two medium sized plastic totes in my shed. They're full of Tommy's things. Mostly toys. Today I decided on a whim to go out there and open them.

As I dug through the toys, wondering who would enjoy them, I felt myself get very possessive. I didn't want anyone touching my baby's things. Those were his memories all over those toys. His drool and trach secretion stains. The only thing I thought I might be able to part with were his blankets. I'm thinking of taking them out and donating them. I'm not sure when yet.

I found the shirt I was wearing when I last held him alive. And gone. I wore it for 3 days after that, not wanting to change out of the clothes that last touched him. I have never washed it. I smooshed it back down into the bottom of the tote.

I found nursing notes, paperwork, and books. I took those out to read. I have his hospital records for the first month of his life, up until the day before his first heart surgery. We got them for his SSI appointment when we first applied and they gave us a copy. I learned some new things. I have read them before as a new heart mom, but now that I'm a little more seasoned, things made more sense. I have the reports from his birth and his very first echo. Very cool to read. Never could remember how long he was. 42 cm. That's just 16 1/2 inches.

I learned that his APGAR was a 9 and 9, but only because he wasn't pink. I learned he was born with SATS of only 68%, but within 30 minutes, he was up to 80%. I learned what the doctors found on their first echo, including the fact he had a PFO. I never knew that. I guess in the grand scheme of things, another hole in his heart wasn't that big of an issue when he only had technically one ventricle anyway.

I also found a lot missing. Most of the paperwork only shows his heart diagnosis and his cricopharyngeal dysfunction diagnosis. No notes about the time he stopped breathing in the NNICU while I watched a crowd swarm in to save him. Nothing about his frequent desats when we tried car seat tests. No nursing notes from the Special Care nursery about his day to day life. I wish I had those.

The only thing I found ironic was in the notes from his birth, it says he had a vigorous cry. I will never forget that sound. I would never hear him cry like that again. Sure he would whimper and laugh with his PMV, but never again would he cry and cry big lusty, lung filling cries. Mostly because he didn't need to. He wasn't unhappy. I guess people would say I am lucky to have brought home a baby that automatically slept through the night and never cried or fussed. But at what cost? He was fed by a pump, breathed with a trach, and monitored 24/7. He was never a typical baby. For that I will always mourn.

I don't know what I will do with his things in the shed. Call me selfish, but I don't think anyone else in the world is deserving enough to touch my son's toys. Maybe someday I will have grand kids and will think differently, but for now, they're safe and sound.

A box of memories that are mine and mine alone.

Growing up the oldest of 6 kids I never had much that was mine alone. I don't think I like it very much.

Beautiful, Beautiful Dream

Today is Tommy's birthday. He would have been 4 years old. I can't believe it. I have a 4 year old. Last night, I had a wonderful dream. I haven't had a dream about him in several months and I have missed him.

In the dream, I was in a school/hospital. (It was a dream...I kept going back and forth) Somehow, I ended up seeing an old teacher of mine and she was telling me that she had gotten pictures of Tommy that someone at the hospital had taken and given to her. Would I like them? I was overwhelmed! Pictures of Tommy that I'd never seen! It gave me the idea to head to the hospital and see what I could find.

I ended up sitting in a room with opaque windows so I couldn't see the patients, but I knew the room was a very small ICU with babies recovering from heart surgery. I didn't know any of the nurses that were coming and going, but I finally got up my nerve to tell them that my sweet boy had been their patient. They remembered his name and gave me more pictures that they had.

After I left, I went to sit in chair in a waiting area to gather my thoughts. I looked  beside me and Tommy was reaching up for me. I scooped up my little guy and got the sweetest hugs ever. I woke up remembering carrying him.

Big Ernie

My second daddy died today. We called him Big Ernie. I met him when I was in Jr. High. He was my best friend's dad. I think I was at their house more than my own at times. I grew up with his sarcasm, his tough outer exterior and softy interior. He cussed in front of me and watched tv shows like "Silk Stalkings". Complete opposite of my own dad.

He's had a bad heart since I met him. He lost a ton of weight in the first year he was a part of my life. "Mama" made sure he ate right. I don't know how many times he salivated over our food as she served him his portion and he said "that's IT?". He would shrug his shoulders and dig in. He worked hard for his family and retired a few years ago from Civil Service.

He was hard on us when we screwed up. He had THE LOOK. Many have imitated, but no one NO ONE will ever do it the way he did. All he had to do was look over the rim of his glasses and hold up his finger. He never had to say a word. We froze in fear as kids (and as adults a few times too) and so did all of our kids when they went to visit Papa.

We called him "Old Man" as a joke. He was far from old, and always young at heart. He wore his hair long and gray. Longer than mine. He appreciated a good joke, the dirtier the better and told them often. As an older teen, he was my go-to guy for a good joke. He read Playboy. He loved a beautiful firearm and was an NRA instructor.

He was fair. Family arguments were met with him throwing up his hands in the air and the call of "I'm going to bed", and when we stayed up to late, he came down the hall and told us it was time to "pack it in".

I miss him. So many memories of a man that has been a part of my life constantly for the past 25 years.

Rest in peace, Ernie. I love you and you'll always be in my heart.

I Saw An Angel Today

Today, I was walking around a second hand store, browsing while waiting for Brandon to finish a class with 4H. I heard a song and wanted to walk away, but the person I was with asked me to follow them. This was the song playing.  It's one of two songs that will bring tears to my eyes and bring Tommy to my thoughts. As I stood there, holding back my tears, I looked up and saw right in front of me a picture of Nemo on a child's place mat. It couldn't be! As the song ended, we continued walking around. My friend noticed a KISS 45. It was "I Was Made For Loving You" and written on the cover was my name. Weird. As we rounded the corner, I was thinking of how to tell my friend about all of these coincidences when a statue caught my eye. It was a fairy. Anyone that knows me knows I LOVE fairies. I picked it up to get a closer look. It had one of those brass nameplates on the front.


It said "Heaven Sent".


That was too much! I could feel the love around me. I've not been having the best of days lately. I needed to "hear" from my sweet boy. Saturday is his birthday. He would have been 4. I've tried not to dwell on him and his memory so much for the past couple of weeks. Remembering him on his Angelversary was just a month ago. I guess there's good and bad that the dates are so close together, but once I've gotten past them and my mind settles down from dealing with the pain, I start gearing myself up for CHD Awareness. I don't know how much I can do this coming year.

I've really pulled away from keeping up with CHD families. Or should I say, following updates. It's all so much. The pain, the doctors appointments, the surgeries, the recovery. Death. The memories never go away. I don't want to say that I'm ignoring Tommy's memory, but I'm trying to dwell less on him in my mind. The love is always there, the fond memories are there. I just can't keep watching him die over and over in my head, and every time I read a new update, I want to cry.

Don't get me wrong, I love CHD and special needs families and I try to say a little prayer for them when I learn that they need it. I just don't think I have it in me right now to be as vocal and active as I have been in the CHD community. I need to recharge my batteries. I think today was Tommy's way of letting me know he's always with me and that it's okay to feel like I need a break.

I'm not abandoning my blog. It just might be a little while before I update. Be patient. I'm still here!