Tonight's picture was taken in August of 2006. We were visiting my parents in Los Angeles.... an August tradition. That day we went to Griffith Park. Mattie absolutely LOVED the little train cars that took us around the park. I can't tell you how many times we did this with Mattie over the years. One thing I never got tired of however, was seeing his reaction each and every time we were in these train cars! Life with Mattie was never boring, he filled my life with love and adventure.
Quote of the day: You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You're on your own. And you know what you know. And you are the person who'll decide where to go. ~ Dr. Seuss
This morning, my dad's physical therapist came over for a session. It was a challenging one at that with multiple runs back and forth to the bathroom, requiring two changes of clothing. I find as my dad's Alzheimer's is progressing, keeping him regular is close to impossible. It is a fine balance of figuring out the amount of fiber and other supplements to give him daily, and just when I think I have the perfect dosage, his system changes once again. The changes can be weekly or daily. This is the typical plight of a family caregiver, which is what makes this role so stressful. As humans we like consistency and to feel in control of a situation. This is NOT possible with caregiving! The only given I know with caregiving... is things never improve. They may stabilize for a bit, until the next shoe drops. What you learn is the art of being flexible, of reading all the cues of the person you are caring for, and having patience and kindness with yourself, as you figure out next steps.
My dad works with three different physical therapists. Today's therapist is very pregnant and her baby is due any day. For those of you who are long time blog readers know how I feel about seeing pregnant women. No matter how many years go by, it is still painful to know that others are bringing a life into the world, and yet my son is dead. Mattie never got a chance to to live past the age of 7. Is it painful to see others having a family, while mine is gone? ABSOLUTELY! But I have to admit that every time I see a pregnant mom, in the back of my mind, the question I always have is..... will this baby get diagnosed with cancer too? It may sound like an outlandish fear, but remember Mattie was carried to term, he was born healthy and happy, and did not show signs of cancer until the age of 6. Anyone who thinks childhood cancer is rare is wrong! Just ask any mom whose child has been diagnosed! To us cancer moms, childhood cancer is prevalent and a national health crisis.
The challenges of motherhood are enormous! With extended families living all over the country, the natural network for childcare no longer exists in our neighborhoods and towns. When I was growing up, both my mom and dad's family lived in New York. Therefore, there was an extended family community that influenced my formative years. But most women today are not lucky enough to have this built in network and have to make difficult decisions.... do you work? Do you stay home and raise children full time, or do you do a combination of the two? Truly there are NO RIGHT or WRONG answers to parenting. It is a very personal decision that each mom must make given her own situation. For me, when I found out I was pregnant with Mattie, I was still in my doctoral program. So my immediate end goal was to complete my dissertation and graduate. On the day I defended my dissertation, I was offered a grade 13/14 job within the federal government to develop the agency's work life program. A program that didn't exist and they wanted me to build it from the ground up given that this agency was impressed with my dissertation research that focused on the stresses of employed caregivers.
Given that Mattie was a baby at that time, I turned down this amazing opportunity. Do I regret it now? Well a part of me does because if I had taken this job, I would have had a whole professional network, I would have my own money, and I would have federal benefits. I would be much more financially independent and secure. Now that said, if I had taken that job, I would also have worked around the clock getting a program up and developed and would have spent very little time with Mattie. Given that Mattie died at age 7, I can't imagine how I would have felt living with the regret of not spending all this time with him. With my experience with motherhood, I wasn't given the luxury of a lifetime of love. So intuitively I made the right decision for me and I am reminded that some things are greater than money. Such as the love, bond, and undying connection between Mattie and me.
What all of this reminds me once again is how childhood cancer has impacted my life! Even my views of pregnancy are quite different from the majority and yet my reactions though understandable to my readers (perhaps), are not socially accepted. In so many ways the emotional consequences of child loss are hard for others in my life to appreciate (even now 16 years later!) which is why in certain circumstances you will probably see me removing myself from the situation so that I don't upset those around me and that my own grief doesn't take away from the joy others may be experiencing and feeling.
No comments:
Post a Comment