what DO you say? (part one)...

Last Monday I recounted a situation that left me...well...dumbfounded, really mad and if I am being honest with myself, hurt. I threw a post together and pressed publish. Little did I know what I had stumbled into. I received emails, facebook and blog comments as well as a few phone calls. When all was discussed and hashed through one question remained.

What DO you say?

I thought about this all week. I had some fabulous conversations with friends of mine who have special needs children. I talked to my friends with large families and those who had been diagnosed with chronic or life threatening illnesses. Their answers to this question were fascinating so I thought I would share what I learned here.

My friend Kathy V. who blogs over at Faith on the High Wire, has a fifteen year old son Eddie who has significant special needs. I asked her to contribute to these posts so you had more than just one voice on these things.

First up we talked about how we were told our children would not be typical kids. For both of us (and many others) the very beginnings of our journey's with these children were impacted greatly by the medical community.

1. Going back to the day of diagnosis, what was said to you? What did you wish was said?

Kathy V. - "Eddie's diagnosis was not accomplished on a single day. So many mis-statements were made during Eddie's diagnosis process, so many harmful and inaccurate words were tossed at us. I think what was disconcerting about the whole matter was not so much the words that were said as the lack of compassion with which they were hurled at us. "He'll never sit up, or walk, or feed himself..."etc.

The kicker of all comments, as bad the couple I have offered sound was this one: "You are obsessing over your child, he is going to be what he is going to be." Now, on the surface that may sound reasonable -- unkind, but reasonable. However, the practitioner in question was responding to me in front of a group of medical students in an exam room where I was sent from the ER to have my child's condition assessed by this specialist. (Note, I had to leave an emergency room with a sick child to assent the mountain of professional specialist) During the exam, these ugly words were said to me -- later my child was found to be toxic on medication prescribed by this same practitioner -- he could easily have died if I had not gotten up the courage to get out of the care of that particular specialist right after that display of utter lack of professionalism and compassion -- not to mention, lousy medicine.

I don't have a problem with the truth, but I wish that what was said to us had been offered with a level of hope. Only two medical professionals in the whole diagnosis process were hopeful. The rest of the team was doom and gloom. My Eddie is moderately mentally retarded, walks, feeds himself and goes to school, camp, Challenger Baseball, swimming, etc. He is nothing like the initial predictions.

So what do I wish they had said, "Here is the data we have about Eddie's diagnosis, it doesn't sound good. However, NO ONE KNOWS what the future holds. Do what you can to enhance the abilities that you see, and don't give up. He has A LOT of potential."

Lyle and I had to have the courage to believe that on our own, without the support of the professionals most of the time. It would have been easier if they had been more positive, less discouraging and more able to see and respond to the resilience and hope that Lyle and I possess as gift from God.

Mary L. - Courtney started having seizures at five weeks of age for no known reason. After months of tests and specialists, hospital visit after hospital visit, we were at Johns Hopkins for a round of testing in their Pediatric Research Unit. They did everything to this kid that was medically available at the time to try and figure out what was wrong.

On our final day there, the team came in to give me their perspective of the week. The Pediatric Neurologist, Dr. Freeman began a very long and lengthy dissertation of all of Courtney’s ailments, from seizures with no known cause, cortical blindness to severe developmental delays. “Mrs. Lenaburg,” she said, “Your daughter will probably not live to her third birthday. She won’t be able to walk or talk. She will be wheelchair bound and will be severely mentally and physically retarded. She will be completely dependent on you for the rest of her life.” I sat stunned in silence, before nodding my head and weakly saying, “Ok.”

The social worker was next. “Mrs. Lenaburg, 80% of all marriages with severely disabled children end in divorce within the first five years. We suggest you and your husband go into counseling immediately to help prevent this.” She said softly while holding my hand. “Also, we understand you have another child, your son Jonathan, he’s four now?” She asked quizzically. “We recommend family therapy as well to help with the guilt and anger he may feel.” I remember being completely baffled because she tilted her head and gave me the briefest of smiles and squeezed my hand before yielding to the next troubadour of good news.I had to mentally shake myself to pay attention to the floor nurse.

The floor nurse then went over Courtney’s daily care plan with me including special charts for diet and medications to help curtail the seizures. I sat stunned realizing that not only would our daughter die, Jonathan might end up in jail because of his anger at being ignored by his parents and Jerry and I would be divorced in the next few years. Overwhelmed doesn't even begin to describe what I was feeling that day. We signed this discharge papers and went home to watch our daughter die or so we thought.

Not one person offered up HOPE! Not ONE.

"We THINK these things might happen. Be PREPARED for theses things to happen. SURROUND yourself with the best therapists and teachers. Make the MOST out of what she does have." That is what I wish someone had said. That fight was up to God, Jerry and I. It has been seventeen years and she continues to fight for every breath.

Now you have a better understanding of how Courtney's journey started. This is what we were met with. This is what we had to overcome with every medical professional, therapist, teacher and family member. It has not been easy however with HOPE and the LOVE of Our Creator, all things are possible.

How about you my dear readers? How have you handled difficult moments where everyone was telling you all was lost?

HOPE heals all things!

Blessings and Grace,