My second child was born at 29 weeks. Robin was very tiny (2 pounds, 6-1/2 ounces) and almost transparent. Her tiny body had not had time to accumulate any fat. Our greatest fear (among many) was for her lungs: I was given two injections of Betamethazone to try to promote development of those precious lungs. All we could do was pray…
Somehow we made it through all those weeks in the Neonatal ICU; all those battles with infection and with a tummy-tube to feed one so small and delicate. I remember, when I was finally permitted to hold my baby girl, syringing five cc’s every minute into her. Anything to give my baby LIFE. Holding her like the most fragile piece of china you can imagine. I never wanted to let go…
Born without suck or swallow reflexes, we went through a trial-and-error time of finding a nipple through which Robin would obtain life sustaining nourishment. Different color nipples required varying degrees of suck in order for her to obtain formula. Blue ones, red ones, yellow ones.
Fast forward…we actually make it home and Robin begins to grow and be seemingly just like any other little girl. Her rather small stature and lighter weight were continuously attributed (at least by our pediatrician) to “history of preemie”.
Now Mommy and Daddy (sadly) are divorcing and Robin and older sister Pam are with Mommy (me) one week and Daddy the other week. On Daddy’s turn, a trip to Cook’s Forest results in an accident on an ATV. Robin is observed to stand up, turn blue and fall to the ground. She is Life-Flighted to Children’s Hospital in Pittsburgh. We are frantic and are told to “pray that it’s not PPH”. Seven hours later, we are herded into a conference room. I notice boxes of tissues being tossed across the table. Then we all hear the words that will change our lives irrevocably and forever: “It’s what we told you to pray about. Robin has Primary Pulmonary Hypertension. Take four football stadiums and fill them to capacity. Now take four random kids of that vast group – Robin is ONE of those four kids.” I don’t remember much; my heart died…
As time progressed, and our wait for a double-lung transplant continued, we were determined to give Robin as much quality of life as possible. To that end, when we went out (which was a LOT) we took with us a plastic fishing tackle box filled with all of her various medicines. Tiny brown glass bottles of an antibiotic specifically designed to prevent/cure oral thrush; antibiotics, anti-fungal medication and drugs designed to aid Robin’s digestion. Another constant companion was her “water” pill (Lasix) – within thirty minutes of ingesting that one, she would need to urinate. Some stores allowed us ready access to their restrooms, while some staff I am certain will always remember the Irish mother who would not be denied! Lots of bottles and plastic syringes (sans needles) to draw up the dose and squeeze into Robin’s ever-patient (no matter how horrid the taste) mouth. Robin was the essence of a “trouper”; she NEVER complained.
We also had one other constant companion: Robin’s oxygen container and cannula. This was a heavy item, carried by Mom or Big Sister. Obviously, supplemental oxygen was vital to one with ruined lungs. More than once, over almost six years, Robin or Big Sister would notice someone staring at us as we performed the essential procedures with meds and cannula. The shushed words. The NOT shushed words. The finger pointing. The STARES.
But Robin and Pam had an interesting attitude toward this unsolicited attention; they wanted to EXPLAIN what was going on and let both the children and the adults UNDERSTAND that there was nothing to fear. Come on over and SEE and TOUCH the equipment and MEET us!
We were able to meet more Mommies and Daddies, Grandmas and Grandpas, Aunts and Uncles and, of course, tons of other CHILDREN this way. How did it end once their curiosity had been appropriately and SAFELY satiated? With HUGS and ACCEPTANCE!
Looking back…with God’s help…how could it have gone any other way?
Robin went to Heaven in November of 2001. At her funeral mass, she was pronounced a Saint and a Martyr to her pain by the Holy Spirit.
I am honored to have been part of God’s awesome plan.