Caregiver

/Caregiver

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

Courage: the will to go on

As we weaved through the line, images of 9/11 dotted the walkway in signs and pamphlets, evoking those stored in the recesses of my brain. It was our first visit to the 9/11 Memorial at the site of the former World Trade Center complex in lower Manhattan. Knowing we were scheduled for doctor appointments on Sept. 10, I downloaded passes to the memorial and planned our visit for that day. It was a good way to honor the memory of those who lost their lives on the fateful day, while reflecting on the value of human life. As we walked around the reflection pools with the names of the lost etched in the tapered edges, I was struck with an overwhelming sense of courage. Every name represented a courageous person who faced a terrifying end. Whether they were rescuers forging ahead into the burning Twin Towers or passengers aboard Flight [...]

2017-01-08T20:42:48-05:00 September 15th, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Faith, hope and the miracle of a sunrise

I love a room with a view, especially if it is a hospital room. While NYU Medical Center may not pass as a five-star hotel, some of the views certainly rival high rise hotels in Manhattan. When Johanna is admitted to the hospital, I pray not only for her healing and welfare, but also for a bed by the window. It’s the little things in life that make it all worth it. The sun was rising over Kip’s Bay when I woke Johanna. She was admitted to the hospital the day before, scheduled for another surgery to correct a blockage in her shunt. I got her out of the hospital bed to look at the sunrise, before the transport people arrived to take her to surgery. “Look, Jo, it’s gonna be a great day!”, I said trying to convince myself even more than her. Johanna looked at the beautiful sun [...]

2017-01-08T20:42:48-05:00 September 1st, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Caregivers need care, too

I spent most of the yesterday in the emergency room with my daughter for symptoms of pressure in her brain. It wasnʼt where I wanted to be on one of the last days of summer, but it was exactly where God wanted me and I was glad for that. When these types of events interrupt my intended flow, I try to let go and let God do something different. Of course, my first concern is for my daughter, making sure that she is safe and comfortable and advocating for her needs within the healthcare system. From experience and from developing the art of reflection, I have learned to be observant and see if there may be new lessons to learn from these experiences. When I wheeled Johanna into the emergency room, it was empty. Relieved, I signed in at the desk. As soon we sat down, the empty waiting room [...]

2017-01-08T20:42:48-05:00 August 25th, 2013|Categories: Caregiver, Life on Purpose|0 Comments

The power of dreams

There was ocean all around me as far as my eyes could see. No land in sight, only a vast dark sea, with me in the middle of it treading water. While I was in the middle of these waters, I was also watching as an observer, a frequent experience of one in the midst of a nightmare. I could feel my heart pounding and my limbs tiring, and most of all, I could feel the weight of my newborn baby heavy in my arms. If only I could keep our heads above water, then maybe we would survive. I woke from this now-familiar nightmare drenched by a combination of sweat and milk leaking from my swollen breasts. My hands reached out to my newborn baby girl stirring beside me in bed. Instinctively, I pulled her close and settled her at the breast; relief flooded the two of us as [...]

2017-01-08T20:42:48-05:00 August 18th, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Setting life’s priorities

This summer we are busy planning for a wedding in our backyard. One of my God-daughters was looking for a simple farm venue to marry the love of her life. When I looked at places they were considering, I invited them to cater the event in our backyard. The bride and groom graciously accepted. My God-daughter and her mom have been here a few times already to help us plant some colorful annuals for a striking display at the end of August. I don’t know many brides would be content with a tent, an old barn and a backyard that you had to weed and plant yourself before you walked down a grassy aisle in your wedding dress. But she seems quite delighted. I received an invitation to the wedding just the other day. It was decorated with a mason jar and fireflies. The bride is quite happy with a [...]

2017-01-08T20:42:48-05:00 July 28th, 2013|Categories: Caregiver, Life on Purpose|0 Comments

‘What is hidden in darkness shall be revealed’

Each one of us has secrets. Some of those secrets are wonderful dreams that we hold in our hearts, which we share only with those we know who will respect those dreams and encourage towards the future. My eldest daughter has a dream which she recently shared on social media, so I know it’s okay to share it here. Since Anna was a very young child, maybe as young as 6 years old, she has dreamed of going into space and seeing the moon. While my son and my middle daughter were busy building legos and and fortresses in the back yard, Anna was putting dolls in space and reading books on the sky and the planets, eager to plot her course. I’m sure she would say that her greatest Christmas gift was the cheap little Fisher Price rocket that came with astronauts and a few little space things. She [...]

2017-01-08T20:42:48-05:00 July 14th, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Finding rest for the weary

This year, I will officially be a mother for half as long as I have been alive. That is a pretty significant detail to me. It also explains why I am so tired. I wonder what I did before I became a mom. Oh wait, I remember. I planned out my day and did what I had planned. I ate independently without having to consider what other people had to eat. When I cleaned the house, it stayed clean (for the most part). And I am certain I went to the bathroom by myself, without someone knocking on the door asking me how to locate an item they lost. I remember the first night we brought my son home from the hospital. He was a little sniffly and every time he sneezed, I would wake up and check up on him. Each night, I moved the bassinet closer to my [...]

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

Lessons in mothering, taught by my children

Most things that I learned about mothering, I learned from my children. I remember the day I discovered I was pregnant with my first born son. I was so amazed at the fact that for the next nine months, I was never going to be alone! Being a people person, I thought that was just great! Little did I know that 25 years and four kids later, I would crave some time alone! Raising four kids and especially homeschooling for the better part of 20 years, I quickly learned that I actually like being alone. I like the cohesive thoughts that have a beginning and an end, with no outside interruptions. I have also learned many other lessons from my kids that have helped me to mature as a wife, mother and simply as a woman of faith. When I found out that I was pregnant, with each of my [...]

2017-01-08T20:42:48-05:00 May 11th, 2013|Categories: Caregiver, Life on Purpose|0 Comments

Nothing can separate you from God’s love

I led the music and worship for a retreat last weekend. The speaker was a psychotherapist whom I have had the pleasure of serving with on other retreats. This doctor is a woman of profound strength and conviction who is passionate about sharing the Lord’s love and being used by God to heal others. In her practice as a psychotherapist and her work as a preacher and teacher, the love of God shines through. Having traveled all over the world to preach and teach, she had many stories of miracles to tell. Stories of people getting out of wheelchairs and people who were blind who now could see were just some of the miracles she has witnessed. She shared stories of miraculous financial provisions and deep interior healings of the heart; forgiveness and love abounding. But the story that touched me the most was the work she was doing with [...]

2017-01-08T20:42:48-05:00 May 5th, 2013|Categories: Caregiver, Life on Purpose|0 Comments