Life on Purpose

/Life on Purpose

Life on Purpose is a weekly column published Sunday’s at www.RiverheadLocal.com

Boundaries and fences: Our limitations are filled with possibilities

When we applied for a CCI service dog, for my daughter, Johanna, I was worried that they might not give us one because we had a history of being really bad dog owners. The first three dogs we owned ran away and two of them got hit by cars. The other one watched me go into labor with my fourth child and decided she had enough. She took off to find another home, probably one with no kids. The application process helped me to let go of the guilt I felt about being such a terrible dog owner. The trainer assured me that the service dog would be well-trained, and I would also be trained to handle it at home and in the public. Over these past 10 years, CCI has really helped me to understand that a well trained dog is a secure and well-behaved dog. After two years [...]

2017-01-08T20:42:48-05:00 February 2nd, 2014|Categories: Life on Purpose|0 Comments

A time for every purpose, even snowbound in N.J.

It was if I had known her for years. I was speaking on the phone with Angela, a woman that I had never met and yet we immediately clicked. We both were moms to kids with special needs. She had adopted her autistic brother when her parents passed away and she struggles herself with chronic illness. Despite the busy commitments of our lives, we both shared our passion to advocate for the rights of the disabled and their families. I called Angela after I reached out to Allyson Scerri of New Beginnings, whose local advocacy for brain injured patients and their families hits home as we eagerly watch the progress of Brendanʼs House on Sound Avenue. Allyson directed me to Angela when I offered to contact some doctors who I thought might be willing to advocate for Jahi McMath, the little girl from Oakland, Calif. who was declared brain dead [...]

2017-01-08T20:42:48-05:00 January 26th, 2014|Categories: Life on Purpose|0 Comments

‘A person is a person’

"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 [...]

2017-01-08T20:42:48-05:00 January 19th, 2014|Categories: Caregiver, Life on Purpose|0 Comments

Epiphany: A day to reflect on gifts

Merry Little Christmas! I hope you still have your Christmas tree up and some lighted garland around the house! Today is a very special day! Today is the day that we celebrate the visit of the three wise man to the stable in Bethlehem — it is the Feast of Epiphany. This feast ends the 12 days of Christmas- and what a lovely way to end. I love this day of Christmas because it is one more opportunity to focus on the amazing gift of the Incarnation, without all the chaos of Christmas! As I shared last year, Little Christmas has always been a special time for our family. Having had many hospitalizations around the holidays, this day has served as a “do-over” for Christmases spent in the PICU. For more than a few years, we have waited to exchange gifts until Little Christmas because of Johanna being critically ill. [...]

2017-01-08T20:42:48-05:00 January 6th, 2014|Categories: Life on Purpose|0 Comments

What’s in a name? So very much

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 [...]

2017-01-08T20:42:48-05:00 December 22nd, 2013|Categories: Caregiver, Life on Purpose|0 Comments

We should pray for our leaders

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 [...]

2017-01-08T20:42:48-05:00 November 24th, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Finding peace, even in Manhattan traffic

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 [...]

2017-01-08T20:42:48-05:00 November 10th, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Acknowledging ‘things unseen’

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 [...]

2017-01-08T20:42:48-05:00 November 2nd, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Holiness…happens

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 [...]

2017-01-08T20:42:48-05:00 October 23rd, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Dear God, Why?

“The whole genome SNP analysis detected an interstitial duplication of the chromosomal segment listed above.” This was the first line of a very complicated report on genetic testing for my daughter, Johanna. This was not an email I wanted to read before Iʼve had my cup of coffee. Recently, I was in a discussion with the geneticist who ordered these tests. As he rattled off terms like those in the sentence above, I bit my tongue not to say; “Itʼs all Greek to me.” This renowned doctor is Greek, so I didnʼt think the expression would impress him. At this point in the progression of Johannaʼs disease, we are seeing more debilitating effects on her brain and her whole body. When she was first diagnosed with cavernomas in her brain, there was only one article in a medical journal. Then five years and numerous brain surgeries later, there were a [...]

2017-01-08T20:42:48-05:00 September 22nd, 2013|Categories: Caregiver, Life on Purpose|0 Comments