I envy every parent of a special needs child who recognizes their gift when they open it.
I had always done what was expected of me. Well behaved child, straight and narrow teenager, typical college student, job, apartment, meet a man, got married, had a child. 4 years passed when we knew we had to do what was expected, and give our son a sibling. Nature had other plans, however, and I miscarried. I couldn’t get pregnant after that, and resorted to in vitro. 1st shot and it took! Several trips to the ER for bleeding, at home bed rest and in hospital bed rest followed. At 36 weeks, via C-section, I gave birth to fraternal twin boys – Liam and Nathaniel. We had been told throughout my pregnancy that Liam (Baby A), looked “off” in ultrasounds, but nothing could be determined until he was born.
Whisked to the NICU, Liam seemed a million miles away. I subconsciously gave myself permission to bond with my healthy baby, who was only a few steps away, and let the experts tend to Liam. He looked so frail, so strange, and I gave in to my terror and avoided him.
Taking Liam home one week later, with no known diagnosis, other than he showed markers for a “syndrome”, only made me more distant. Carting him from specialist to specialist, having him poked and prodded, only added to my feelings of fear and resentment. Finally, after 4 excruciating months, he was subjected to an MRI, and a diagnosis was made – Miller Dieker Syndrome – a form of lissencephaly. Insert overnight medical degree. Seizures, g-tube, suction, pulse ox, PT, OT, at home nursing, meds administration, insurance coverage, medical equipment.
Again, doing what was expected, the appointments began. Neurology, cardiology, gastroenterology, ENT, pediatrician. I never stopped to think was it ok to ask – “is this really necessary”? There was nothing any specialist could do to change the course of Liam’s illness. It seemed as though their only job was to prolong the inevitable.
Over and over again, expectation overshadowed any notion of quality or comfort. Liam was miserable and so was I. When we weren’t visiting a doctor, or having a therapist of nurse visit us, he was in the hospital with a severe respiratory infection. Around and around we went. For 16 months.
I wish someone had grabbed me by the shoulders and shaken me, telling me not to follow the textbook routine of a care plan, but to really take a long hard look at what, and who, that care should look like and be for. On the surface, I looked like such an over competent mother, rattling off every dosage of meds, how much and at what rate to give through the G-tube before he aspirated, recognizing when a seizure required Diastat or a cough sounded like a trip to the ER was needed. But in my expertise of Liam’s medical care, I never stopped to see that he was a baby, who needed a mother’s care. I robbed myself and my family of the chance to best just that…a family. It wasn’t until Liam left us that I recognized the gift that had been bestowed upon us. It wasn’t until I no longer needed to drag him to an appointment or stay up to wait for the nurse to arrive that I began to see what had been in my arms all along. Not a burden, but a blessing. I was too wrapped up in what I thought I should have been doing to take the time to do what I could have been doing – being a mother to my son.
Almost 10 years have passed, and I look at the world very differently now. Through Liam’s Room (www.liamsroom.org) and my enlightenment on the necessity of including pediatric palliative care for any child with a potentially life limiting illness, my mission is now to insure that any mom, dad, brother or sister be given the opportunity to recognize their own gift, in there here and now.