Life on Purpose

The other day I was sitting on the porch with a cup of coffee and I heard dog tags jingling on the pathway that leads from the driveway up to my front door. When I stood up, I saw Taffy, my daughter’s service dog, jogging up the walk with a big smile on her face (really, she smiles.) “Where did you come from and how did you get out of the house?” She pranced up to the porch and nuzzled her big head into my hands as if to say, “It’s okay, Mom. I was just out for a morning walk.” Taffy is almost 12 years old and she has been Johanna’s service dog for almost 10 years. She has been by Johanna’s side through many ups and downs, in the hospitals, on planes, on stage. They have been in the NY Times and on national news. Taffy was trained [...]

“Christ is risen! He is risen indeed!” This is the greeting of the Greek Orthodox Church during the Easter season. Like the 12 days of Christmas, we celebrate the Easter season for 50 days. It’s just that important. Christ died for us and rose again on Easter. How could we get it all in three days? When my kids were little, they took the liturgical celebrations of the Easter season quite literally. They milked it for all it was worth. So there was a perpetual Easter egg hunt in the bag yard that began in the wet spring and continued into the warmth of summer. We got our money’s worth of those plastic eggs. But of course we had to keep supplying them with candy to fill the eggs. Now, we don’t even have an egg hunt for the kids. It’s just for the dogs. We fill up those plastic [...]

This is the first year in a very long time that I didn’t spend Good Friday walking the Stations of the Cross at the Shrine of Our Lady of the Island. After being at NYU for appointments all day Wednesday and Thursday, I was exhausted and so was Johanna. Then on Friday, we were waiting for the home care nurse to come and draw Johanna’s blood. It was a very important blood draw which will help us decide if she needs to continue on this IV therapy. Still, I wanted to pass the time in a prayerful way that included my daughter. So, I curled up on the couch with Johanna and we watched “The Passion of The Christ.” I resisted the temptation to make popcorn. Before we turned the movie on, my husband reminded me that it was R-rated. I told Johanna that the movie was very graphic and [...]

This week I met my match. I dealt with a medical issue that put me into a temporary state of shock- at least I hope it was temporary. While Johanna was in the shower, one of the scabs on her head opened and washed away as the water hit her head. Immediately I noticed that the opening revealed a part of her skull. I was stunned. As I helped Johanna out of the shower, I carefully explained to her what happened. Johanna is used to the ups and downs of wounds healing. Surgical staples glistened like a tiara on her head many times over the past 17 years. Because of the number of brain surgeries, the skin on her head is thin and heals slowly. This past year was a tremendous challenge with close to 10 surgeries since March 2013. Despite this, I was concerned that seeing her own skull [...]

This weekend, I am in Chicago with Johanna and my older daughter, Anna. We are visiting the CCM3 Clinic for a special type of MRI and an evaluation with gives us some outside opinions for Johanna’s case, as well as advancing the research for a cure. I was a little nervous making the trip so soon after Jo’s last surgery. But even if we planned the appointment later, there was always the possibility that we couldn’t make it. I really wanted to be in Chicago now, to meet a special friend of mine also visiting from California and to spend time with family. It’s all a part of my strategies for maintaining hope in the midst of these trials — for breathing when I feel like I am drowning. Believe - Restore - Exercise - Advocate - Take Time - Heal - Engage This weekend and this column is about [...]

I am grateful that God spoke to me in a nightmare and so it became a dream that would guide me on this journey of intense trials and immeasurable blessing. I never dreaded the dreams that began shortly after Johannaʼs birth, because somehow I knew that there was a lesson to be learned. Each night they occurred, I woke feeling like I couldnʼt breathe. While water scenes changed, the premise was always the same. I was in the middle of the ocean trying to keep my and Johannaʼs head above water so that we wouldnʼt drown. It was up to me to keep us alive- at least thatʼs what I thought- till God spoke to me in the dream and told me to let go in that ocean of mercy and He would teach me how to breathe underwater. Over the past few weeks I have shared with you these [...]