Thursday, July 30, 2009

Tommy lives on!

Last year, I was contacted by Passey-Muir about using Tommy's videos on their website. I am pleased to announce that the website has been updated and our sweet Tommy's memory has been honored on their website.

I always said Tommy was famous. He's going to live on through the website and continue to help other families. I am touched and honored that Passey Muir chose Tommy to represent them.

Click Here to see Tommy in action.

Tuesday, July 21, 2009

Who Have I Become?

I am still struggling with who I have become. Or should I say, I am no longer who I used to be. I was Tommy's mom. Mom to a superhero with big blue eyes and a personality bigger than whatever room he was in. I was caregiver, medical supervisor, and advocate for my son. My life was Tommy. Every moment consumed me and I lived for each of those moments. He was my calling in life. He was what I was sent to this Earth to do. I was good at what I did.

Together we fought for each milestone. Things most parents take for granted. Tommy was 7 months old before he fell asleep in my arms for the first time. I have shared most of his ups and downs about his physical disabilities, but there was so much more that Tommy had to fight for. Tommy had Sensory Integration Disorder. In other words, all touch was bad touch for him because he had only known a hospital bed and pokes and prods for the first 79 days of his life. He self comforted and did not bond with his mother's touch. My touch.

After his first heart surgery, I couldn't hold him for several weeks. Those were critical newborn weeks. When I finally did hold him, he arched his back and hyperventilated. I was told he was adjusting to his trach, he had gas, blah, blah, blah. I knew better. My baby didn't want to be held. ENT looked at him, respiratory looked at him, cardiology looked at him, all scratching their heads. I took him to his pediatrician and told them my son had SID. Mild concern. I picked Tommy up and put him in the doctor's arms. He turned blue and arched his back. I had orders for Occupational Therapy in my hand that day.

We worked with an OT and PT (physical therapist) once a week each starting at 4 months old. We learned tricks to help Tommy's body learn that touch was good. Joint compressions were done as well as brushing his entire body with a surgical nail brush. Long, straight even strokes. Every day, I tried to hold him but it became very clear that he was not tolerating it. I bought an infant carrier and carried him, but with all of his wires and hardware poking out it was hard accomplish much. Plus, he wasn't too crazy about it.

Finally, at 5 months old we were rewarded with his first magical smile. I happened to have him propped up on the couch taking pictures when it happened and I caught it on camera. Around the same time, we were able to introduce color and sound into his life. Up until that point, everything was overstimulating. His hospital room had been a quiet, sterile place. Not a lively, colorful place with noise and bright shiny things. It was very much a one day at a time thing. Every day I was on the floor with him trying to get eye contact. Trying to hold him for a few more seconds, trying to let him learn that my voice was soothing and my touch was comfort.

It was a very, very happy day when he let me hold him that Sunday morning when he was 7 months old. I rocked him to sleep for the very first time. Magical. Tommy had SID issues all the way up until his death. He had to be dressed in a onesie every day up until about 3 months before he died. If not, he squirmed and stressed out from the bed touching his skin. He didn't like certain textures and only had 3 tub baths in his life. All ended up in failure. The fact he would even touch water with his hands was monumental. Sponged bathed his entire life. We had only just moved to tub bathing when he was hospitalized the last time.

Tommy's OT worked hard to get him to learn new touch. She brought rice and beans to the house to stick his hands in. She bribed him with toys he liked shoved into them. Even then, he would only stick one little hand in and jerk back. The other hand, firmly planted on the back of his neck. If Tommy rubbed the back of his neck, he was unsure of the situation..proceed with caution. If the backs of his hands went to his eyes, that was the end of the day. Tommy's sign for STOP everything, I am overstimulated, go away now! We pushed him a little bit further every week, but he always ran the show.

Tommy's care wasn't just feeding pumps, medications, monitoring his color, and suctioning his trach. Sure there was all of that, along with diapers, baths, nap times, doctors appointments, surgery, procedures, and schedules. It was getting on the floor every single day to stretch his joints, touch his skin, help him roll over, sit up, open his mouth, stretch, reach, touch, feel.... We didn't go outside because he didn't like the wind on his skin and FORGET the grass! That was to be our next goal.

I miss him so much right now. My 24/7 routine of his care has been replaced with a job outside the home. The older boys have gone from homeschooling to regular school. They've gone to day camp all summer long. I sleep a lot now. I think that is the biggest change. I went from 3 hours of sleep to a full 8 or 9 hours. After 3 years of not sleeping, I guess I have a lot of catching up to do. I miss the UPS man and the DME bringing our supplies. I miss having 5 doctors on speed dial. I miss knowing the security guards at the hospital knew me. I miss lugging a 70 pound stroller and 3 oxygen tanks. I miss compounding medications and washing syringes.

Most of all, I miss being his mom. Being Tommy's Mommy WAS my life. It was who I was. It defined my purpose in life. I feel so empty and unmotivated these days. Sure, I am happy. I have a job I like, my kids are doing well, my marriage is healthy and alive. But I'm not defined as Tommy's Mommy anymore. I don't know who I am. I don't stand out anymore. I'm just a mom that carries the burden of loss on my heart every single day. Quietly. On the inside where nobody can see.

As much as I wanted Tommy to be well and not need all of the medical care that he did, I would take it all back. No matter what we had to endure. Anything. ANYTHING is better than his death. The hard work was worth every reward. I feel like I have been dropped from a cliff. Like I studied for 3 years to pass an exam only to be given a test on a different subject and failing. I get the feeling of "why did I work so hard only to have it all taken away?". It's like having to relearn life all over again. Except there is no sensory technique for a broken heart and grief. I can't wear special clothes and learn to feel better. I can't massage my joints and learn to feel again. There's nobody to carry me around and cuddle me when I want to cry.

I just have to take it one day at a time. Learning to live my life as mom to an angel. Mom to an eternally beautiful child. I will always be Tommy's Mommy. I just don't have anything to show for it except my memories and my tears.

Tuesday, July 14, 2009

The Darkness

Today marks one year of the end of the happiest days of my life. In 48 hours, my kids will be snatched from my home, Tommy will be hospitalized and will never see home again. I have a lot of anger and pain that I need to let out, but don't have the strength to let it come to the surface. I am hoping to begin dealing with the countdown to the one year anniversary of Tommy's death.

The days are slipping past me unnoticed. We have found a new beginning as a family, but there will forever be something missing. I don't know what subjects will pour from my heart over the next few weeks, but know, they ARE from my heart.

Today, right now, at this very moment life if good. Rob is napping, the boys are playing a computer game together and enjoying each other's company. I have my feet up for a little while because I will be standing for the rest of the evening. I am tired today, because it is my Friday. I am fortunate enough that most of days I do not want to remember happen to fall on my days off. Like tomorrow. I will spend a moment remembering those last hugs and snuggles as I put Tommy to bed for the last time in his very own bed. Had I known, I would have never washed his sheets. I wish I could smell his little head one more time. Hear his laugh. Feel his little hugs around my neck.

Saturday, July 4, 2009

July 4th

This day is so emotional for me. Last year, I made a point of making a special memory with Tommy. He had come so far! The previous year, he was laying in a hospital bed recovering from open heart surgery. I was recovering from the fact we had been making funeral arrangements because we were not sure his body could tolerate the surgery and we could lose him. I watched the fireworks from his hospital room window and had my own special Independance Day. My son had lived through his surgery!

Last year was the first time Tommy would see fireworks. I was so excited! I could barely contain myself and could not wait until the sun went down. As soon as I hear them going off, I got Tommy into his stroller with all of his gear (suction machine, oxygen, emergency supplies) and he, Brandon and I went for a walk in search of a good spot to watch.

Brandon was thrilled and still talks about it all the time. Tommy was a bit underwhelmed. I was disappointed that he didn't ooh and aah (or in his case, wiggle his little body in excitement, clap and point). But, we were outside, enjoying the muggy July weather and watching fireworks. Not stuck in a hospital. It was the most amazing feeling! I don't think I will ever be able to watch fireworks again without crying.

I leave you with a photo, taken July 6, 2008. My sweet little guy finally had the upper body strength to balance on his horsey. Nine days later, he would be hospitalized and never come home again.


Diagram of Tommy's Heart Defects

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