Friday, September 25, 2009

What Would Have Been

My little guy would have been 3 today. Would he be walking yet? Talking? How big would he have been? Tommy is Forever One. He died 35 days before his second birthday. Last year, I was completely alone. It rained. I cried. I blew bubbles. I sang "Happy Birthday" between sobs to the ceiling as I lay in bed that night. It was such a sorrow filled day.

Tommy's birthday should be about life and joy, because that is what Tommy was. He was a flirt, he was a Ham. He was JOY. I don't know another word that described him so completely. Tommy had one birthday party in his life and it was amazing! He smashed chocolate cake and smeared his face with it. I cleaned him up in the bathroom at the park where we had the party. I didn't really plan that very well. I thought I would just be wiping his hands with a wet wipe. I did not expect to have to bathe him in cold water in a public restroom and dry him with scratchy paper towels while he protested the cold and turned a nice mottled shade of blue. I will never forget the scowl on his face. He was happy once he was dressed and back enjoying the sunshine, but for 5 minutes in that restroom, I was the enemy!

I want to share a very touching experience I had today. For the past couple of weeks, I have immersed myself in plans for my 20th high school reunion happening this weekend. It took my mind off of Tommy's birthday and missing him so much. But tonight my emotions got the best of me while I was at work and before I knew it, I was drying my wet eyes. As I am composing myself, a regular customer comes into the store. He buys scratch off lottery tickets and loses. He then asks my opinion on buying another, which he does. As he his scratching, I reach out to touch the jar sitting on the counter. Tommy's picture graces the front. My boss gave me permission to collect change to help with expenses. As I gaze down on Tommy's face, I realize someone has scribbled on the plastic with an ink pen across Tommy's face. Very annoyed, I speak out loud about who would do such a thing to MY baby! I reached for the glass cleaner and was able to clean it off.

The customer is shocked to learn the child is mine. My baby in Heaven. He quietly asks what happened and I give him the 4 second version. Softly, he begins to tell me of his own losses. His first child born 3 1/2 months premature passed away at 11 months old from SIDS. A second child miscarried, and a third also born premature doesn't live throughout the day. The oldest child, a girl, was born on September 26. One day after Tommy's birthday. I couldn't believe he had suffered so much loss. I don't think he's even 30 yet. He and his wife have been blessed with 2 healthy children now after all of their loss.

Shortly after he left, I had another customer ask me about Tommy. He shared that he lost a little girl when she was 3 months old. She had been a happy baby and never cried, not even when she was hungry. He and his wife went on to have 6 more children, the youngest a girl who turned out to look nearly identical to the daughter they had lost. He said sometimes it's hard to look at her because of the memories.

My tears were no more. I felt like God had placed these people in my path and let them share their stories with me for a reason. It softened the blow of missing Tommy. It let me know I was not alone. I spent the rest of my night at work in Joyful thought of Tommy. I am not saying I won't cry over him again. I will probably lose many tears tomorrow, but they won't be from misery. Sadness yes, but not misery. My misery has moved on. I am upbeat most days. The tears are farther and farther apart. Instead I have found that love did not stop developing when Tommy died. I love him more now than when he was alive. Not to say I did not adore my son when he was alive, but that love is ever changing and ever growing. I didn't know that was possible, but it is. My love for my son continues to grow.

Three years ago, my tiny son came into the world. Under the circumstances, we did not know if he would live through the birth. We thought he would be weak and frail. Boy, were we WRONG! Tommy entered the world with a lusty, loud cry! He APGAR'd at 9 and 9. Tiny lungs filled with air and his heart beat in a way that sustained his body. Our son was a miracle from the moment he was conceived. For 23 months, we got to enjoy his smile, his wit, his sense of humor and his unending love.

Happy Birthday, my sweet boy. I will hold you in my heart until I can hold you in my arms again.

Wednesday, September 9, 2009

Another Heart Child

We have been trying to get Brandon on behavioral medications and part of that process is to have an EKG to rule out heart defects before starting him on a stimulant. In June, he had the EKG. It came back "borderline", so we repeated the test. It too came back the same way. We were instructed to take him to our family doctor, which we did.

His pediatrician will no longer be his pediatrician. Our family history of heart defects has turned out to run pretty deep in our families. On Rob's side, his grandmother and first cousin both have heart defects (mitral valve prolapse), on my side, my grandmother had an Atrial Septal Defect, and my niece and nephew have heart defects (mild pulmonary stenosis and Wolff-Parkinson-White Syndrome respectively). And then there was Tommy's complex heart defects. So having all of this information on our family history and knowing we had just lost a child to CHD, this "doctor" looks me in the face and tells me Brandon is fine because he can't hear anything through his stethoscope and that stimulants don't kill kids with heart defects. He had prescribed Brandon stimulants in the past before we knew he should have an EKG. This doctor apparently isn't from that school of thinking and I am so glad we began to treat Brandon elsewhere for his behavioral issues.

I was livid and stood my ground. It took me 20 minutes of persuasion with this man to get a referral to a pediatric cardiologist! I told him I had lost one son to heart defects and I wasn't losing another. He hemmed and hawed and finally begrudgingly gave me the referral.

Yesterday, we saw the PC. Brandon had another EKG in the office, as well as an echocardiogram and physical exam. As soon as the PC heard that Brandon's first cousin had WPW, he said to me "Thanks, I really needed to know about that!" and began to rule it out for Brandon. After 3 matching EKGs, Brandon's official heart diagnosis is Short PR Intervals. Here's a link that explains it better than I can. His PC was able to rule out WPW because he doesn't have the Delta waves associated with WPW, however, he is at a small risk to develop SVT (supraventrical Tachycardia) and we are to bring him back immediately if he ever has chest pains or heart palpitations.

Brandon's PC feels he is okay to be on stimulants or other psychotropic medications. This is a HUGE relief for us! However, because of the risk of SVT, I will be keeping a very close eye on Brandon and making sure he is seen by a trusted physician regularly. One that trusts my mommy-gut.

For the record, a stethoscope CANNOT detect all heart defects. Brandon's and my nephew's were detected by EKG. If all heart defects were detected by stethoscope then no baby would ever be sent home with the family not knowing their child was dying. But it happens all the time because its not a reliable method! If I had not already been a heart mom, I may have never fought to see a pediatric cardiologist. Things could have been very different and turned out to be much, much worse!

Bottom line, trust you gut. Babies need to have a pulse oxymeter test done before they leave the hospital and they need blood pressures checked in all four limbs. If you're pregnant, ask for a Level 2 ultrasound and be sure the technician is skilled in recognizing congenital heart defects. Tommy's heart defect was found by accident. If I had not had other issues during the pregnancy, I would not have had multiple ultrasounds. We had already had our "it's a boy" 20 week ultrasound and his heart defect was NOT detected at that time. If it weren't for the other issues and the tech in the doctor's office stumbling across it we never would have been sent for our Level 2. Tommy's heart defect would not have been detected and he would have not been born at MUSC but at a smaller hospital in the area not equipped for heart babies. More than likely, he would have died.

My complex heart baby may be in Heaven now, but because of him, his big brother was detected with a minor heart defect as well. Had I not been AWARE of heart defects and the many possible ways they hide...Oh that doctor is still burning me up!

Echocardiograms and EKGs are wonderful diagnostic tools, and a pulse oxymeter is a fantastic tool if only more doctors would realize it. For perspective, during pregnancy, a mother is tested for Down Syndrome. The occurrence for Down Syndrome is about 1 in 1000 births. Everyone has heard of Down Syndrome and probably knows someone born with it. There's posters in the OB's office about it and the doctors persuade the mothers to be tested for it during the pregnancy. Blood is drawn and sent to a lab, sometimes an amniocentesis is done. Scary stuff for a new mom! Now, understand that Congenital Heart Defects occur in 1 in 85 births! It's usually detected by a level 2 ultrasound. No blood draws, just a little gel on the belly and an hour of your time. A child with Down Syndrome will have challenges, but a child born with a heart defect could die within hours of birth. Or how about sent home "healthy" only to die days or even years later because their heart defect wasn't detected. Betcha that child "passed" the stethoscope test.

Friday, September 4, 2009

Living in the Present

For the past year, I've been able to recall memories of what I was doing the previous year. A couple of days ago, I realized it was all a blur. From September to November, my life was nothing but one dark nightmare. Tommy had just been buried and my marriage was unraveling. I was (rightly so) a complete mess. Trying to hold on to the one thing I thought at the time I had left, I was falling into a deep depression trying to save my marriage.

I remember nightmares that I had as I slept alone in our quiet house with nothing there but memories and time. I watched tv, I packed, I washed a lot of clothes. Sometimes I washed things over and over just to be doing something. Rob had moved out and I was at the darkest time of my life.

I am NOT sharing this because I want pity or for anyone to hate or blame Rob. We all grieve differently. This is about perspective. I don't remember things on a daily basis. Really it's just a big blur of bits and pieces. It was two long months of losing my sanity. Literally.

It took me a very long time to climb out of that darkness. I had thought for so long that I could not get out of it by myself and could not go on with my life without Rob, but in the end, I had to be the one to pull myself out of the despair. There's nothing harder than finding out nobody can save you but yourself. No matter who you reach to, the hands are just out of reach.

Rob and I did find each other again and our marriage is better than it has ever been. In the light of day, we realized that our grief had overcome us in two very different ways. Mine just happened to internalize itself while he ran from his grief. While I was reaching out to cling to the one link I had left to Tommy, he wanted to get as far away from me as possible because I was the one reminder of Tommy in his eyes. Grief is a strange thing.

Looking back a year ago hurts me very much. For the first time in my journey of losing my son, I am now living in the present. Looking at each day ahead of me instead of looking back with longing and saddness.

My days are no longer filled with sadness and nightmares. I sleep soundly and even have wonderful pleasant dreams. Sometimes they are even of Tommy. I no longer feel the quietness of a house full of memories surrounding me. Instead, I am surrounded with peacefulness. A year ago, I never knew quiet could be so loud. I found there is a difference between quietness and peacefulness.

I have an annoying cat that meows constantly. I have my handsome husband playing a video game three feet from me and I can hear the soft sounds of the radio in the boy's room. I won't have a nightmare tonight and tomorrow I will probably have a headache from the sounds of the boys crashing through the front door after school. And a year from now, I won't remember any of it unless I happen to look back at this blog. It's good to finally be living in the present. I will cherish my memories of Tommy and our lives with him, but I no longer have a tapping on my shoulder making me remember what I was doing with him every single day of his life the year before.

I still catch myself staring at his picture and wiping away a stray tear. I will never forget him. But I no longer have to need to cling to my past. It took me a whole year to figure out that Tommy is in my future too, that I would not forget him and I don't have to make myself relive each day of his life. His life and my life are forever intertwined. As long as I live my life and cherish his memory, he lives.

Diagram of Tommy's Heart Defects

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