The Heart

Tonight I received an email from my friend, Sierra. I've seen this before, but today, on the eve of the one year anniversary of Tommy's death (8/20), it hit me right in the gut. I bawled my eyes out. Thank you, Sierra for sending it to me. It was pain and comfort all at the same time.



The
Heart



"Tomorrow morning," the
surgeon began,
"I'll open up your
heart...."


"You'll find Jesus there,"
the boy
interrupted.


the surgeon
looked up, annoyed "I'll
cut your heart
open," he continued,
to see how much damage
has been
done..."


"but when you
open up my heart, you'll
find Jesus in
there," said the boy.


The surgeon
looked to the parents, who
Sat quietly. "When
I see how much
damage has been done, I'll sew
your
heart and chest back up, and I'll
plan
what to do next."


"But you'll
find Jesus in my heart. The
Bible says He
lives there. The
hymns all say He lives
there. You'll
find Him in my
heart."

The surgeon had had enough. "I'll
tell
you what I'll find in your
heart.
I'll find damaged muscle, low
blood
supply, and weakened vessels.
And
I'll find out if I can make you
well."

"You'll find Jesus there too. He
lives
there."

The surgeon
left.

The surgeon sat in his office,
recording his notes from the
surgery,
"....damaged aorta, damaged pulmonary
vein, widespread muscle
degeneration.
No
hope for transplant, no hope for cure.
Therapy:
painkillers and bed rest.
Prognosis:
here he paused, "death within one
year."


He stopped the recorder, but
there was
more to be said. "Why?" he asked
aloud.
"Why did You do this? You've
put
him here; You've put him in this pain;
and You've cursed him to an
early death.
Why?"

The Lord answered and said, "The
boy,
my lamb, was not meant for your
flock
for long, for he is a part of My
flock, and
will forever be.
Here, in My flock, he will
feel no pain, and will be comforted as
you
cannot imagine.

His parents will
one day join him here,
and they will know
peace, and
My flock will continue to
grow.."

The surgeon's tears were hot, but
his
anger was hotter. "You created
that
boy, and You created that heart.
He'll
be dead in months. Why?"

The
Lord answered, "The boy, My lamb,
shall
return to My flock, for He has
done his duty:
I did not put My lamb
with your flock to lose
him, but to retrieve another lost lamb."
The
surgeon wept...
The
surgeon sat
beside the boy's bed; the
boy's
parents sat across from him. The boy
awoke and whispered, "Did you cut
open
my
heart?"

"Yes," said the surgeon.
"What
did you find?" asked the boy.

"I found
Jesus there," said the
surgeon.

Author
Unknown

Happy Birthday to Me!

I dreaded my birthday for a whole year. Last year was so miserable that I never wanted another birthday again. But I am loved and many, many people wanted to see me have a happy birthday. Starting at midnight!

My first birthday wish came from my mother in law, who called me at midnight to sing me happy birthday. I had just finished working a 13 hour shift and Rob was driving us home. When I got home, I logged onto Facebook and found a few birthday messages. By the time my birthday was over, I would have about 45 messages! Wow!

My sister called me and sang me happy birthday as well as my mother in law (again) and her sister later that day. My mom is just as busy as I am, so she left my birthday card at work for me. I get a kick out of the fact the card is called "Ode to a Busy Person", LOL! I get my work ethic from her. She's the ultimate "do whatever it takes" mom!

Rob and I went out for lunch. We went to a local Mexican restaurant here in town and had lunch special fajitas! Yummy and low carb! I ended my day by working a short shift at work. I told Rob I wanted birthday cake, but he thought I was joking because I have been such a stickler on this diet about low carbs. I ended up getting cupcakes on the way home and made him sing me happy birthday while I ate them.

I have to say the best part of my birthday was hearing Rob tell me happy birthday and that he loved me. I've kept a lot of things private, but last year on my birthday I didn't hear either of those things from him. I am so thankful for the changes in my marriage. I could have went the whole day without another birthday wish after hearing one from him. It really did put me on cloud nine.

Grief..and Peace

I have been asked to attend a Women's Revival Saturday morning. The topic is dealing with losing your child and grief. The lady that invited me, Lisa, lost her children 4 years ago in a fire. Yet, she reaches out to me and tells me that what I have gone through is worse. Much worse. In our talks this past week, she has asked me to speak tomorrow as well. She thinks God will speak through me, hoping to help someone there that needs to be spoken to. I have agreed.

I am conflicted by Lisa telling me that what I have gone through is worse. Losing a child is losing a child. She says because Tommy was sick and we knew he would be born sick that essentially we grieved from the moment he was born. I guess she is right. I never looked at it that way before, but it makes sense. I grieved a healthy pregnancy that I did not have. I grieved not having my perfect, healthy child. I grieved unmet milestones and delays. I just never knew that was what I was feeling.

I am really looking forward to tomorrow. My sorrow is changing. It no longer holds me down and drags the tears out of me. My sorrow is beginning to turn into positive things. If talking about surviving Tommy's death helps ONE person tomorrow, then it will all have been worth the struggle.

I never thought I would see this day. The day God let my heart start to heal and allow me to say that I am at peace. I will never stop loving my little boy, but I've moved into a place where I can love him even more, if that were ever possible. Tommy has moved into a special place in my heart and is always near. He allows me to reach out to those hurting and share his love.

The sweet little boy who lived inside of my body and was given life by my life has done the same for me. His life has given me MY life. A new purpose, a hope, and reason to live again. His memory will help me reach out to those hurting and show them what love is. Tommy was perfect love. Tomorrow, I will use that love to let the Spirit guide my words. As long as he lives in my heart, Tommy lives on forever.

Random Thoughts

Coming into August, I was nervous I would be a wreck every single day, but strangely, life has been somewhat normal. My friend Sheila came down from Indiana for a couple of days and we went to visit Tommy's grave. I guess it is becoming more routine for us, because for once, I didn't cry and the boys laughed as they picked wildflowers to scatter on his grave. Sheila did cry, but it was reality for her. She'd never been.

What else has been going on with us? The boys started school on Tuesday and both of them are loving it.

Rob's grandmother had her heart repaired about 3 weeks ago and is finally well enough to come out of sedation. What a great blessing! It was very touch and go in the beginning.

I managed to sprain my left wrist at work on Tuesday night. Bummer. It really hurts, but I am keeping it wrapped and as long as I don't move it too much the wrong way, it's fine. It hurts a lot less today than it did yesterday, so I am hoping by the end of the weekend, all will be well.

Rob and I, along with some friends started the Atkins diet on Tuesday as well. After the first two days, Rob and I weren't so sure that a high fat diet was good for our hearts, so we have modified it to our needs. Lean meats most of the time and low carb veggies. No butter, salt, fat, mayo or grease. We do indulge in bacon occasionally, but other than that, everything has been lean. I've lost 5 pounds in 3 days. I know, it's all "water weight", but who cares...I've never lost 5 pound in 3 days on any other diet. My goal is to be somewhere in the 135 to 150 range. The scales this morning said 212. I have a long way to go! I am considered to be in a pre-diabetic state, so this has double the health benefits for me by cutting out the carbs. The best part of this diet is that working in a convenience store we have a plethora of pork rinds. LOVE them and they're zero carb. Any time I get the munchies, I grab a bag. Now to find out where we keep the zero carb chocolate chip cookies.

I have a few things coming up in the next two weeks. Matthew has shots next week, I have been invited to hear a speaker on losing a child, my birthday, and finally, the BIG day. The one where I plan to hide in my room and cry all day, but maybe I will surprise myself.

Tommy was joy. Instead of feeling sad and sorry for myself that day, I should make his memory a thing of joy. Yes, there will be tears, I can't stop the tears, but I CAN stop getting prepared to be sad. Tommy's life is worth celebrating every moment. Maybe this is acceptance. Maybe it's denial. Either way, it is not pain today. It might be tomorrow, but for now, I will take feeling good and feeling myself surrounded by Tommy's love.

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.

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.

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.