Lovely Jelly Rolls

These are my baby Isla’s arms. They are my jelly rolls. I nibble at them for breakfast, lunch and dinner, and every hour on the hour for snack (except when she’s sleeping of course). They are delicious, these chubby arms, and so lovely. And lovelier still when she coos and giggles when I nibble at them, my lips chomping with delight.

I am sad because I know these jelly rolls don’t last…they start to fade away around six months…at about the time she starts crawling away. When Sophia had her jelly rolls, the only attention they got was the meticulous wiping of the folds during bath-time. But when they disappeared, I surely noticed their absence.

Lately, these jelly rolls have become a constant reminder of how lucky I am to have a healthy child…again. Chubby arms, chubby legs, chubby rosy cheeks - such wonderful signs of health could easily be taken for granted. Which I did, until some things outside of my comfort zone pried my eyes open to the sad possibilities. I have several friends who are trying to get pregnant and most of them have experienced that joy of pregnancy only to be heartbroken by a miscarriage. One friend has had several miscarriages and now that she is pregnant again – she is deathly afraid of another miscarriage. Just the mention of “baby” or the tune of a lullaby brings her to tears. And I feel for her and the others. I have been there. I know what it’s like to wish for more than anything in the world, to bargain everything else in my life just to have that one wish come true. I remember the pain of having that wish granted only to be taken away. I remember the secret sadness I felt when someone else had pregnancy news. I remember thinking what a horrible person I was for being so angry at someone else’s good fortune – but I truly felt there was no justice in the world because I knew what a good mother I could be and there were bad mothers out there having babies right and left.

Another sad possibility is to bear a child that is not so healthy. I have a friend who gave birth only 24 weeks into pregnancy, and that precious baby is fighting for her life in the NICU. I cannot imagine the heartache, worry, and agonizing stress the parents are going through right now and into the future.

For some odd reason, while my healthy child was gestating in my womb and I went on a pregnancy leave of absence…I came across a blog about a mom who lost a disabled child. And from that blog I followed links to other moms who have also lost children. As I read their stories of sorrow, their struggle to move on, and their quest to find answers to why it happened, I couldn’t wipe the tears from my eyes fast enough. The blogs were so painful and heartbreaking, yet I couldn’t stop reading. I couldn’t understand my obsession.

Life is a mystery and the forces of heaven and nature intermingle with our destiny – at least with mine just recently. I returned to work two weeks ago. And last week, just minutes before my shift ended, I received a patient assignment that put things into perspective: A little 20 year old girl with cerebral palsy, quadraplegic, absolutely helpless, nonverbal, mentally disabled, and just recovering from sepsis. At first I was afraid of taking this complex assignment because of all the tubes she came with and how fragile she would be. Upon entering her room, the first thing she did was smile at me, and of course I fell in love with her right away. At first I felt so sorry for her, this poor child trapped in such a wrecked body. I was afraid to touch her for fear of breaking a bone or inflicting pain that she couldn’t express. I went home feeling absolutely sad.

Back to work the next morning, I met the mother. Then immediately I remembered the blog stories, the thoughts and feelings of the mothers, their wishes to make others understand that having a disabled child is a gift. After just a few words, I felt a connection to the child’s mother, and as such felt more comfortable and competent at caring for her daughter. She said “if I could do it all over again, I wouldn’t change a thing” – the exact same words the blog mothers said. Having this child has given her and her other children such a special appreciation and perspective on life. I laughed and cried with her as she shared her thoughts and experiences. I left that day feeling better about the child, because of a mother who did not and will never give up on her.

I wonder if I would have acted differently toward the child and mother if I did not have the understanding that the blogs gave me. Would I have acted like the night-shift nurse and become frustrated at the mother for being critical with the care given to her child. Would I have continued to be afraid of caring for the child and limited my rounds. Who knows, but I sure am lucky to have found the blogs and coincidentally apply that knowledge to my job. Furthermore, I am acutely aware of the fragility of life and realize how lucky I am that the daily concerns for my children does not include “Is she getting enough oxygen?” or “Is her skin breaking down?” or “Will the germs on my breath kill my child?”

Cam and I are lucky for our healthy children. And we promise to never take their health for granted.