Ada - September 7, 2004
2 1/2 weeks prior to her diagnosis
Two days after the condition was diagnosed she suffered a heart attack and a stroke and was placed on life support. Three days later she underwent successful open heart surgery to repair the defect. That began the long, challenging road to recovery. It is a road we still travel and a journey well chronicled.
Ada - October 2004
Six years ago today, we brought our daughter home from the hospital. That was no simple task. We still did not know whether or not her heart would recover enough function to sustain her life, let alone allow her to live anything close to a normal life (or if you prefer, an average life). We were thrilled to have our daughter back home. She had a nasty bedsore on the back of her head that required careful treatment. We had a challenging feeding and medicine schedule that kept us busy from early in the morning to late at night, but I was fairly confident that we could handle it as I spent the previous weekend at the hospital training to do it under the supervision of the nursing staff. Ada “ate” all of her food and took all of her medicine through a feeding tube hanging out of her abdomen.
Ada - Late November 2004
Looking back, the hardest part of that first night was the fact that a few of her meds had to be mixed by a compounding pharmacist. A compounding pharmacist is a pharmacist who can mix medicine from a recipe rather than dispense premade drugs from a container. I did not understand this completely when we arrived home and I called St. Joseph’s lone compounding pharmacist to see if we could get her prescriptions filled, only to discover that they were scheduled to close ten minutes later. I had assumed the prescriptions were like any standard prescription, and could be filled 24/7. In a panic, I jumped in the car and promptly drove to the wrong pharmacy. I remember thinking, "What will I do if they close before I get the prescriptions filled? She can’t make it through the night without her medication!" When I finally arrived at the correct pharmacy I discovered that most of the meds had already been prepared because the hospital had called earlier in the day. The pharmacists were more than happy to remain open a little late and fill our order. Our co-pay looked like a car payment.
Ada remained awake until six a.m. that first night home. I wrote in an e-mail that “She is fascinated by the red bedroom walls. She seems to enjoy her old spot on our bed. She stared at and played with the toys that attach to her bouncy chair (she can see up close - real close - better than the doctors think she can). She also gave her mother a couple of big smiles. Mom and Dad think that Ada is going to thrive here at home.”
Today, it feels like another life in a distant time.
It’s kind of standard at this time of year to write something about being grateful and giving thanks for our blessings. Then we kill a large bird and eat it. Most years I by-pass this tradition and head straight to the killing and the eating and the food coma; however, this entire fall I’ve kept one eye on the calendar while asking myself, “What was I doing six years ago today?” This year each date falls on the same day of the week as they did six years ago.
Last week I sat at my kitchen table and worked with Ada on learning how to add single digits. It was a long, laborious process that she did not fully understand, but willingly worked at. Of all my children, teaching Ada is the biggest challenge, but it is a challenge that I willingly take. She’s here to teach. That’s all that matters.
I don’t know why God chose to bless our lives as He did six years ago, but I am grateful that He did. I could write a thousand words and never come close to expressing what I feel, so I only write a simple “Thank you," and publicly share what He did for us. All glory and honor belong to God.
