I'm not sure why, but I keep wanting to apologize...for long posts and no poetry. It's coming, soon. Not now because an amazing thing happened to me on the way to
After calling everyone to tell them about the diabetes consultation with my doctor I turned up the radio. I heard Brian Naylor guest host of Talk of the Nation begin to introduce a few people who would discuss and take phone calls for 'Channeling Dragons To Parent Terminally Ill Kids'. My ears went up like a German Shepard (go listen after you read my post). Oh how I wanted to call in, but I was on Route 1, and if you live in Jersey, driving in the madness of afternoon traffic is not safe, even with your headset on.
There is so much I want to say about this. I often want to talk more about being a mom to a child with a chronic or terminally ill disease. But to many it's too painful. Not me. There is a need to speak up about what I went through. It helps the healing process. I lost clients over this illness and her eventual death. Yes, many of my friends and clients dropped off the face of the earth after six months to a year. It's too close to home for them. So they avoid it.
How did my adventure begin with Anelisa in the first place? I like Emily Rapp on NPR found myself pregnant and making life plans. Being pregnant is a wonder in itself. You anticipate the future with much more emotion. I had the pregnancy and labor books memorized. I knew when I efaced, was nesting, although labor pains were like having cramps, a little too easy at the most, I had it all down. Her father and I blew off a pot luck dinner at church the night before and darted off to the emergency room. I was going to have a baby!
Thirty hours later, I was told the baby was in fetal distress, so a C-section was in order. Okay, knock that one off of my list- no natural birth, this time around. I unfortunately they put me to sleep, but awoke to the announcement of a girl. Not the boy the doctor told me. She was barely six pounds. We named her Anelisa Diane Dillion. I could deal with a girl. She was a clock work
My chosen pediatrician came on the second day and said the nurses heard a murmur. A what? A blast from the past. See I was born with a murmur. Actually a VSD, Ventricular Septical Defect, or a hole in the heart. They called us 'Blue Babies' back in the sixties. The minute you begin to breath on your own the heart begins to show stress and lack of oxygen. I was three months premature, and was in the hospital for three months. Growing up I heard how sickly I was, and my lungs were never really strong. Asthma and all that. I out grew mine, except for an irregular heart beat, but they watch me carefully.
The pediatrician told me they had to whisk her away to another hospital, Children's Medical Center Dallas, so they could do a catheter. You cannot really see inside the heart without this they told me. It tells them more details about the problem. Medicine had come a long way from my mother's agonies.
During this experience I remember feeling...but I was a new and confused mother. What had I done to deserve this. My whole dream of being a mom was kind of shattered. You feel so helpless at times. When they are suffering you want so badly to change places with them.
Fortunately I had a couple friend who were both in medicine. Matter of fact the wife worked with the heart surgeon, Dr. Nikado (since retired) who went on to do Ane's first and five altogether Blalock Shunt surgeries. They help explain things all along the way. See Anelisa had five defects, but she was too small to fix anything. Actually when she was one year old, they told me she could never be fixed. The bigger you grow and the problems aren't fixed, the body begins to deteriorate. I could see in the couples eyes they knew her fate.
Down the road her case was looked at by the father of heart surgery and a panel of the best in Chicago. They could do nothing, not even a transplant, because it would mean a heart-lung, and they are barely doing it on monkey's. I've learned more about medicine than I ever cared to know. I still can spout out that stuff to medical professions if it comes up. And it did a few years ago. Two pediatric cardiologists sitting next to hubby and I at a wine and food pairing said they still hadn't perfected surgeries to help children like my Ane (Ah-knee). Sigh.
We had no idea how long she would live. I walked out of that doctor's office in shock that first year. Hadn't medicine come far enough they could fix her? No they hadn't, but there was still hope. Hope. A pretty name for a girl don't you think, but not powerful enough to heal my baby. I fell to my knees that day in my own agony. My mother spiraled down into her mental illness abyss when she heard the news. Friends, they offered up "I will pray for you guys", "Surely they will find a cure", and as Emily says on the radio "I can't imagine the pain you are going through". Or can they?
It's something we all never want to feel. When I got pregnant, which was soon, after Anelisa, I was so scared. because I lost three pregnancies before my first live birth, what if I lose this one, or it might be sick too. Could I handle another? Life begun to suck, that is until I brought her home. Seeing her in that ICU unit day after day, hooked up to leads, wires, and tubes was awful. It sucked big time. My first photo to show friends and clients was me holding her hooked up like Frankenstein. What could people say? Do not be afraid. I swallowed the tears and gave her the best life she deserved. She was a princess to everyone who had the chance to meet her.
When the fog lifted it had been four years since she left us eleven years ago. I often think if I had not kept so much of my feelings pent up trying to be strong, I might have survived the grief period better. See I never went to support groups. I kept my composure when I spoke about her, my chin up. You have no choice since you can't spend your time crying in the open. On the outside she looked eighty percent normal so it did not come up with strangers. Blue lips, nails and pale skin. Oh and extremities that were long and lanky, like we were starving her, but she ate, She ate well. So most people, even friends and family thought she would survive.
Listening to Emily Rapp on NPR brought a thought to mind. I should encourage others like us to attend support groups. To find others like us, and not hold back the tears. We have every right to cry. I will never see my only daughter attend her first dance, graduate from school, or wear a wedding gown. Not hear about her first kiss, although we often giggled about boys. She could not understand how I like a boy with dark hair and she like blondes. I used to I told her, but you cannot predict who you fall in love with.
Her last trek outside was to hunt down the cute boys in our new neighborhood, but she was only gone for five minutes. I encouraged her to take her motor scooter so she wouldn't be so tired, but she cried and said she felt ugly, and wanted to know why she couldn't be like everyone else. You can't predict your fate in life I told her. Hers was a purpose beyond my motherly concepts. She lay against me and I soaked in every moment like that until she was gone.
I am glad NPR chose to host that radio program. You can go and listen to Emily Rapp on NPR. Educate yourself and imagine what it is like to be a mother of a terminally ill child. You are missing out on the most wonderful experience we have been given. Death wonderful? No, but it's an eye opener. My son Aaron has made up for many things I will never have with Anelisa, but he is a boy. They have other issues to hurdle. He hugs me and tells me he loves me, so I am glad I had another child so soon after her. One day when he becomes a father, we will be on the same wave length. His pain of loss is a whole other post, and maybe he will share here one day.
My client Puneeta and I still are close since her daughter Anjuli passed three years ago. I am still waiting for her to have another baby for me to help with (smile). She is afraid. We talked about the NPR show, and she is so fresh into the grieving period that she does not want to go listen to others talk about the pain and loss. She will one day. She will help another like I helped her. We also will be on the same wavelength. Till then I hope there will be another chance to meet or help another mom, and I can share in the love these children bring into our lives.
Emily Rapp has her own blog for which she said has saved her (I feel the same way Emily!) Little Seal, Ronan's Blog. It is a great insight into what others have to say. The comments are often as good or better than the posts. One of her friends Jennifer mentions watching him so Emily can do some things, and how she is watching 'a sweet dying baby'. Truth is can be such an eye opener.