The Gift

Ke'von is a gift.



He is a little boy at Shelby's daycare who is developmentally disabled. He is also the great-nephew of Shelby's teacher. Shelby's teachers and I have become close and shared our lives over the past year. While they are not her parents, they do a tremendous amount in helping us to raise her to be a good person. They are what I like to refer to as "partners" in parenting. And their partnership is not just with us but with all the parents and children they encounter.



As we have gone through the last year, we have shared with Ms. Nancy and Ms. Diane the trials of Jeff's job with autistic children, of our joy at finding out we would have a son, and many other things. But it was in sharing our decision to decline prenatal genetic testing, that we have found the most common ground.



When I became pregnant with Shelby I simply took testing to be part of the procedure. Until Jeff said no. His reason, "Honestly what difference does it make. This is still our baby. We still love him or her no matter what." And he was right. Of course that meant, in our litigious society, that we both had to sign numerous releases that we understood fully that we had declined testing for chromosomal disorders like CF and also Downs Syndrome.

But we were open to the gift of life God was giving to us. The life that He wanted us to take part in. When Babytalk magazine included in this month's issue a cover model with Downs Syndrome and an article about the joy of raising a child with this condition, I was amazed and thankful. So often, I have had to explain to people that if I was given a son or daughter with DS or MR or any other "disorder" I would have the same prayer I have with my "normal" daughter, that I be the best mother for him or her as possible. As Jeff recently told someone, "this is my son, knowing he has something "different" about him will never change that." In fact, we often share with others who question our decision that we would feel blessed that God trusted us enough to give us the gift of the joy of raising a child who is abled differently from other children.

That is not to say it will be easier or the same to raise a child with a disability in our world.

And that is where Ke'von comes in.

Ms. Nancy recently shared that her niece encounters many difficulties in raising one child with a disability while having two others without one. She mentions not being able to do something as mundane as take him to a movie. Unfortunately he is unable to sit and watch one. So, when she takes her other children as a treat, family members help out with Ke'von.

Ke'von, while often in his own world, is a relatively happy and friendly boy. While I know he cannot answer me, I always speak to him. I am not sure if he understands what I am saying or even who I am, but I do it anyway. Had testing been available for his condition before his birth, who knows if his mother would have accepted it or not? And who is to say she would have had the courage to accept this gift from God. But she has taken on the challenge whole-heartedly.

Recently, Shelby began to watch the Baby Einstein sign language videos. But before they were in our house, as she was eating one day, she signed "eat" to me. My exposure to sign language is limited, but it was a sign I recognized. We have never signed to her previously, so I sat in awe.

A few days later, I mentioned it at daycare. Ms. Nancy mentioned that Ke'von signed to eat often. Shelby had learned the sign from observing him. This little boy who has no concrete communication skills with most of the world had taught my daughter a way to communicate with me before her oral language skills could be fully developed. She can now sign "Mommy" and "Daddy" as well. She is on track developmentally as far as language is concerned. But the gift Ke'von gave our family when he allowed our little girl to "talk" to us, I can never completely comprehend.

Yes, God placed Ke'von in all of our lives as a gift. And that gift keeps on giving.

It's not Heat, It's Holiness.

The air conditioner repairman could not come out to make an assessment for four days and it would be a full week before our central air would be functioning again.
We are in the middle of a heatwave and a drought. We don't have screens in our windows.
The inside temperature hovered around 85-90 degrees F.
I opened the doors for an hour or so during the coolest part of the night and it dropped the inside temperature about 3-4 degrees.
I had a choice to make about how I was going to cope.
Many years ago my pastor, made a simple statement- perhaps it was a quote:

"If you desire holiness, you must seek holiness."

I do desire holiness.
I decided to embrace the circumstances with joy.
I chose to revel instead of suffer.
God has blessed us abundantly.
I sought the Lord and he answered me.
We were at work during the day.
We found an old window unit that kept the bedroom bearable.
We were able to sleep.
We had all we needed
with our Heavenly Father keeping watch.

Hot Hot Hot

When Mike and I returned home from our "date" at "BODIES" the house felt warm. In fact,not only did it feel warm, it was flat out HOT. Our new air conditioner in our new house died. At 11 o,clock at night we just wanted sleep. But as with all things, God gives us a new perspective. Mercifully the humidity was not high and we have a ceiling fan in the bedroom. We don't have babies, so it was fine. We were better off than many folks. I slept on chair cushions under the stars- those same stars that Jesus gazed upon so many years ago. I slept well. I slept very well.

"BODIES"

From the first advertisement I knew that I wanted to see BODIES -The Exhibition. Mike, my husband, was not as enthused. I'm a nurse and he's squeamish. I was going- with or without him. In the end he decided to give it a try.

The exhibition was extraordinary. No matter how much anatomy and physiology I study and learn, I remain in total awe of the miracle of life. Under preservation, the specimens were not gory at all. Mike carefully read each and every caption. A shiver went through my body at the sight of a display of the cranial and spinal nerves intact and isolated.

I gave reverence to each specimen out of respect for the soul that they once housed. I pondered who they might have been. They were people. They got up in the morning, did their thing, and went to sleep at night- unless they worked the night shift. They were people like me with everyday lives. Some of them smoked, their lungs were black.

These people donated their remains to science that others might learn.

At the end of the exhibition Mike turned to me an said, "It's really amazing, so much has to go right. It's a miracle that we..... live.."

Indeed it is. With God all things are possible, especially life.

God Bless those souls who chose to display their earthen vessels in the wake of death as an illustration to the living of the miracle of life.

From a Father to a Father

This week, my brother-in-law is staying with my father-in-law and step-mother-in-law (that's a lot of inlaws!) in an attempt by the family to help him get his life back on track. I will, out of respect for him and my husband's family's privacy, not divulge details.

However, my husband and his father spoke the other night about possible plans of action to assist my brother-in-law. My husband and his father share a very unique closeness built of some tough life experiences but also, I believe, in part because of something as simple as their birthdays being just 3 days apart.

So other night, when we sent my father-in-law a link to some information for Jeff's brother, it was only natural for his father to reply back not only with thanks, but with a heartfelt belated birthday wish and an apology because he forgot to mention the birthday when they spoke the other evening.

This is how it read:

I thought about it in the middle of the night last night but thought better of calling you to apologize. I know we were thinking about you on the 1st and very much hope the next year is filled with rewards which you so richly deserve. HAPPY BIRTHDAY, SON. LOVE YOU.

Even more special is that I can see how proud my father-in-law is of his son as a father. And that is a true gift this birthday!

Prepare for Landing

The first and sometimes the only thing that I read in the news paper each day is the comic strips.

Of late, the first comic strip that I read each day is Funky Winkerbean, by Tom Batuik. Lisa Moore, one of the main characters is losing her earthly life to a recurrence of breast cancer. Lisa is quite a dynamic spirit. As an unwed teen she gave up an infant for adoption. She is an attorney, a wife, a mother and a friend. Her inital approach to this bout was to battle with chemotherapy. Lisa’s done this before, she knows what is in store. She closes her law practice temporarily and she contemplates her living will. She consents to a request by the son that she had given birth to that her identity as his birth mother be revealed. When it is discovered that the cancer has spread and is untreatable Lisa decides to stop the chemotherapy. “ I want to live the time I have left, not just be alive.” She states. The priorities begin to emerge: family and friends. Day by day, panel by panel She begins her dissent. “ I want to take walks with Les and play with Summer.” “ I want to see the leaves change just one more time.” She says goodbye to friends and meets her son. Her loose ends are being tied up. She emails her friends soliciting prayers of “all denominations”. She is approaching death as a new phase of life and she has chosen to revel in each breath.

Mr. Batuik has been criticized for this storyline. Personally, I think he’s a classic writer. Didn’t we all learn in school the relationship between comedy and tragedy?

I have most recently felt the loss of two women friends to cancer. Each friend was diagnosed approximately one year prior to her final day. In both cases, the circumstances under which we had become friends had changed, and neither was any longer a part of my day to day life. My communication was through occasional visits and emails. The progress of their illnesses and final days were a series of emails, weblogs and telephone trees. Not much different from a daily comic strip. I had to wait to find out what was next, I had to put it in God’s hands, and I marked time with prayer. Lots and lots of prayer.

Terri died first. Her character in life was noteworthy. She loved the Lord. She was a wife, mother and advocate for children. I will never forget the sight of her walking up the sidewalk to my house for my son’s graduation party. She knew several children who were graduating that year and she was quite ill at the time. I never expected her to make it. She had attended the graduation ceremony in the afternoon . At 8:45 in the evening she was forcefully willing one foot in front of the other in approach to my front door. She was determined to “make the rounds” and fulfill all ritual and obligation. I laughed out loud through my tears at the joyful sight of her. Thank God I got to know her.

Mary Ellen was different, but no less a character. She passed away on thanksgiving day. She loved the Lord. She had been a school teacher and mother to an adopted little girl from China. She touched many lives in many ways. I recall encountering a student of hers who implied that there wouldn’t be much for her to do in Heaven because she was better with the children who would most likely be somewhere else. I believe that to be a compliment. Praise God for the laughter she brought me.

In the more distant past. October of 1999 to be specific, my 83 year old grandmother, Lee , died of lung cancer . In her final days, despite her dementia, she insisted on being groomed and dressed so that she would be ready for the angels. Praise God for allowing me to be her legacy.

I Love them all even in death. They live in my heart and for knowing them I am a better person.

There is someone like Lisa Moore in each of our lives. Her story portrays a reverence for and dignity of life unto the end. Like Lisa, each of my loved ones was blest with the knowledge that their days on Earth were rapidly coming to an end. They were given the grace of a “prepare for landing” announcement.

May we each be blessed with the grace to live the rest of our days prepared for landing.

Peace and all good.

In the presence of the angels O Lord, may we praise your name. Ps 138

Waiting

We have been given a date for our son to arrive. September 21, 2007. And a time 9:30 am.

So now we are waiting.

And preparing.

And getting nervous.

And praying.

God makes us wait for any number of things. 40 weeks to have a baby. 365 days for Christmas. 16 years to get a driver's license. But it's those imprecise waits that really get to us.

How long before I meet my spouse? When will a new job open up that is right for me?

I remember reading a Joy Note from Sister Patricia once that stated her frustration that God created a desire to do so many things, but she could not accomplish them all at once. It was then that she reflected on how we want to operate on "our"time while God operates on His own time.

The date and time we were given is the longest we will have to wait to meet our son. If God's time is sooner than that, we accept that. And honestly what choice to do we have? Still there is a calm in knowing it is all under control, although out of our control.

This past week as we saw the tragedy unfold in Minnesota, we were reminded that we know not the day or hour when our Lord will come. Only that we must be ready. And that is what we are all waiting for.