Caregiver

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 [...]

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made;your works are wonderful.”(Psalm 139:13-14) January 22 marks 41 years since the U.S. Supreme Court affirmed the legality of a woman's right to have an abortion under the 14th amendment to the U.S. Constitution. The 14th amendment, section I states, ”No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.” A new era of an interpretation of this right to abortion began in the United States with that decision. In the wake of that decision, a polarization of groups of Americans based on opinions for or against [...]

When a couple is expecting, one of the fun preparations is to come up with a name for the baby. Before the advances in ultrasound, parents had to have at least a name for a boy and a girl. Some parents decide to wait to meet their newborn face to face before deciding on a name. Whichever way itʼs decided, most people would agree that a name can have a powerful affect on a personʼs life. We gave each of our children Biblical names which help to point them towards role models who lives reflect Godʼs love. For two of them, they also were named after relatives; my eldest son and daughter share their first name with great-grandparents. Sometimes names are much more than we expected. When I named my daughter Mary Angela, we never imagined that her namesake and adopted grandma, Angela Mary would die suddenly, just one month [...]

God gets my attention best in the early morning. He created me that way. My finest hours of focus are typically between 5-10am. Typically, I wake up with a thought, a song or a scripture that the Lord uses to get my attention. Sometimes I wake up with a picture of person’s face whom I being called to pray for. The other day, I woke up with President Barack Obama’s face before me in my imagination. There was a pained look in his eyes that struck a chord in my heart. I was immediately filled with a sense of sadness and conviction that I don’t pray for him or any elected official often enough. As many readers of RiverheadLocal and followers on Facebook know, our own situation with insurance and healthcare issues made national news when my pediatrician and I were interviewed on the nationally syndicated, Sean Hannity Show [click [...]

Most of us think of peace as the absence of conflict, a period of quiet or a feeling that sweeps over us when everything is going well. When we look at peace through the lense of scripture and try to understand God’s perspective, peace is so much more. The Hebrew word for peace is “Shalom” which implies a state of being; of complete restoration and wholeness. It is understood that one can only experience this sense of wholeness when we are in relationship with God. Isaiah 26:3 says: “A nation of firm purpose you keep in peace; in peace for its trust is in you.” Shalom, rather than a fleeting feeling is a place to dwell “in peace” because when we make it our firm purpose to trust God, we will be living in a place of peace. I don’t know about you, but I don’t always feel like I [...]

Have you ever felt a tug on your heart and emotions, feeling a sense of grief creeping in that you just can’t explain? Then, when you look at a calendar, you realize that it marked a time of great loss in your life? I had that same experience while walking up 33rd Avenue in Manhattan this past week, as Johanna was in NYU hospital recovering from a recent surgery. I left the hospital to take a walk, to clear my head and feel the crisp fall air hit my face. Johanna was resting in the PICU, but not comfortably. We were all concerned about the pain in her head and watching the intricate system which monitored the pressure in her brain, hoping the new shunt would work well and give us all some reprieve. As I walked, I became aware of this grief tugging at the my consciousness. It was [...]

I distinctly remember the prayer; I prayed it often. “Lord make me holy. Make our marriage and family holy. Do whatever you have to do in our lives to make us truly holy.” The prayer was inspired by a sense of complacency. My husband and I were in full-time ministry, raising a family with Gospel values, yet something was missing. We seemed to have our fill of God; we served Him and His people, lived simply and raised our kids with a knowledge and experience of faith in the context of community. Yet the cry of my heart, indeed my deepest desire was for holiness. Scripture says that the Lord fills our deepest desires and answers the delights of our hearts. It just doesnʼt tell us how. Johanna was born one month after our 10th year wedding anniversary. She was our celebration baby. The two older kids were 9, 6 [...]