Tuesday, March 31, 2009

Tommy, being Tommy

A little memory of Tommy. He really loved that little red dog that we named his Wub. I carry it with me in my purse every day now. Just as Tommy was never without it, neither am I.

Thursday, March 26, 2009

Missing Tommy

Today was one of those days where I missed Tommy so desperately. I was at work and just couldn't stop thinking about him. Rob and I were talking last night about when we decided to add to our family, how excited we were to get pregnant with Tommy. I feel so cheated. I wanted that pregnancy. I wanted a beautiful perfect little one to add to our family. I should have a two year old following me around calling me mommy 2000 times a day, driving me crazy.

I don't ever want anyone to think that I would have ever changed Tommy or who he was. Not EVER. I would have gone through it all over again. But why when I took such good care of myself before and during the pregnancy did I have a sick baby? Why when he was born so sick and I fought so hard for him every day of his life did he die anyway? Why are there so many parents out there having kids they don't want or can't care for when my body cannot withstand another pregnancy? So many whys.

Back to the conversation with Rob. After sharing much of this with him as I have here, he tells me "It wasn't God's plan". How can I question that? My heart aches so much to have Tommy back. I hold him in my dreams, but I wake so sad. I haven't visited his grave in weeks. It hurts Rob too much. It honestly doesn't bring me much comfort either.

I have found something that does bring me some comfort. I look at this beautiful yard full of life. Birds, squirrels, cats, deer, flowers, trees. It is an explosion of spring time out there. Flowers are blooming all over the yard and the grass is green. We can see green for miles. No highways, no factories, just green. Looking around the yard a couple of days ago with Rob, I told him how peaceful and full of comfort this place gives me. It was a sunny day with a warm breeze. I shared with him that we could have never lived here if Tommy were alive. We're too far out in the country. His medical needs were too great to be this far away from a doctor. Rob agreed with me.

And then it hit me, tears and all. It was if the wind whispered the answer to me. "Mommy, I'm sorry I had to go away, but I want you to live here because I want you to see what Heaven looks like too."

Wednesday, March 25, 2009

Baby Stellan Needs our Prayers!!!

I was just introduced to this blog. This little one can use as many prayers as you can muster! My Charming Kids

Baby Stellan is experiencing an extremely fast heart rate and the doctors cannot get his little heart to calm down. Please check out his mom's blog. They will touch your heart.

Friday, March 20, 2009

Nothing new

How's this? Nothing is going on in my life. Nothing anyone reading this isn't already dealing with. Homework, dishes, work, feeding the cat. We have been trying to adjust to our new schedules and so far, things are okay. Brandon is refusing to do his homework and still having difficulties in school. I hope we can figure out the reason why he's having so much trouble.

I've come to realize just how "normal" life has become. It's strange to not be stressing out about the latest medical dilemma. I have found myself taking on other's stress. I empathize with parents of kids with medical needs. I want to reach out to every person that crosses my path with a sick child. I can't wait for college to start this fall. I want to do this every day for the rest of my life.

The kids will be home from school in about half an hour and shortly after, I am off to work. It's nice to be working again. Not financially, but because I'm doing something with myself.

Wednesday, March 18, 2009

Its FINALLY Happening!!!!

I just got this email. Please help us all in memory of Tommy. Pass this on to everyone you know.

Dear members, I am very excited to inform you that The Congenital Heart Futures Act was introduced in the Senate and House of Representatives yesterday! This bill calls for increased funding for research, a national registry, and funding for a national awareness and public education campaign. C.H.I.N., along with our partners in the National Congenital Heart Coalition, need your help to get this important piece of legislation passed! Please take a moment to find out how you can help and send an email to your representatives today.

For additional information on how you can get involved and to view the text of the bill, please see: Bill You can also view the announcement and official introduction of the bill. Please feel free to pass this email along to your friends and family to ask for their support, and to post the information on your Facebook or MySpace pages!

Thank-you for your interest and assistance,

Mona Barmashmb@tchin.org

This is amazing! We all need to contact our Representatives and ask them to support this bill! Click on the "Bill" link above and you will be able to read more how to contact your Representative. There are even templates to follow. I wish this could have been done years ago, because it's too late for Tommy. But it's not too late for others! Please help pass this along to everyone. Post it on your blogs, spread it like wildfire and PLEASE send in those emails!

Below is a picture of Tommy 2 days after his second open heart surgery. With research and funding, maybe these surgeries could be a thing of the past.

Monday, March 16, 2009

A Little Life Update

Life has been hectic for the past few weeks. I am working nights and Rob is staying home with the boys. Switching roles has been a little bit of a challenge. He's not used to their routines at night yet, so I've been calling home with reminders every night. So far, everyone is surviving. My sleep is being disrupted by the new schedule as well. I'm getting about 4 hours of sleep at a time. I'm hoping in a couple more weeks, everyone will be adjusted.

I love my job. Wish I wasn't driving 30 minutes each way, but we do what we have to do. The job market is tight, so I will take what I can. I'm just fortunate enough that I love what I do and have wonderful people to work with. I'm also running into old classmates from high school. These are people I haven't seen in 20 years. Pretty cool!

Rob has a few projects going on at home to keep him busy when he's not helping with homework or giving baths. First, he is renovating his grandparent's barn. It's still in great condition, but it's full of clutter that has been piling up for years. So far, he's gotten their tractor running again, installed new outlets and hung new lights. He's also pulled his Pontiac Firebird out into the open to begin fixing up. It will take years before it's done, but he and the boys can't wait to get their wrenches on it! I'm even going to help.

The boys are on their way to school now, so I think I will use the morning to catch up on some sleep. I work 6 days a week so I need to rest when I can!

Saturday, March 7, 2009


In my last post, I put a link to a blog about a little girl named Gracie. With work and taking care of my family, I haven't had a moment to check her blog until today. I'm so sad to say that Gracie passed away.

It seems like every time I get on the internet and get my updates from all of my "heart" moms, I'm reading about another child earning their wings. There's always another child going for surgery and needs our prayers. Another very sick from complications, or another going into rejection after a transplant.

WHY??? 3 years ago, I was blind to this world! I never heard of a heart defect and Tommy was my 4th pregnancy. Sure I'd heard of murmurs and such or a "hole" in the heart but all of my encounters proved to be minor problems and never required any intervention. But I know differently. I know there is a world out there full of sick babies that don't make it. Every time I hear about another child passing away, especially from a heart defect, I want to reach out to that family.

I wish I could tell parents how to prepare themselves for what is ahead, but I can't because everyone grieves differently. I did what was right for me in that moment when I watched Tommy die. I had my husband take pictures of him in my arms one last time. I cut a lock of his hair. I kept the clothes he was wearing at the time. I took pictures at his viewing. I tried to implant every single memory into my head.

Now Gracie's mom and dad are facing the same emotions. How to remember, keep loving, grieve, and try to move on while missing a piece of themselves. Too often the world feels it's time to move on when we're not ready. I for one, go about my day to day life, but when I fall asleep at night, I still cry. I wave when I drive past the cemetery and I blow bubbles to Heaven for him when the mood strikes me.

I want to hear him saying "mama". I want to hear the sounds of the machines. It's much too quiet at night these days. I want to see that smiling face despite what he's going through. Life was hard, hard, hard with Tommy. I can't believe how simple things are these days. I wish for the hard life again. Of trach changes and middle of the night ER trips. Of feeding trials and therapy 3 times a week. Of machines and supplies. Medications and feeding pumps. I'd do it all again because my baby would be ALIVE. No matter how hard it got, I loved him so much. I'm so sorry I ever complained about anything. At the time, I was just so tired and frustrated.

I hope I dream about him again tonight. My arms want to remember him. I want to smell his head again and hear that laugh. I want to hear "mama" and see him sign "love you" to me as he kisses my cheek and hugs me. I miss his little baby hugs. He had just learned affection a couple of months before he died. It took him a very long time to kiss my cheek. He didn't like things touching his mouth. It was a huge step for him to be able to do so.

So now I get to go back to reality. A life where I am mom to 3 boys instead of 4. A life where I do regular mom things like helping with homework, going to work, and cooking dinner. A life where I can sleep next to my husband at night. I still wake up at 4 a.m. despite my best efforts. My body still wants to check on Tommy. I always checked on him at 4 to refill his feeding pump and suction him if he needed it. Hopefully tonight I won't awaken at all, seeing that it is after 3 in the morning now.

I sometimes wonder if this will get any easier. If someday the tears won't fall so quickly. Then again, as long as they do, Tommy is alive and kicking in my heart. Just as strong willed as ever.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries