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.