MyBopsBlog: Overwhelmed with the Diagnosis...

Monday, February 6, 2012

Overwhelmed with the Diagnosis...

Cindy's Post number 2

As I think about those early days with our James, I am so grateful for the people who helped us as we started the journey. I can remember the day that the doctor left our room after letting us know about James’ diagnosis. We were shocked and overwhelmed... not knowing what to do... what to think... how to take another breath...here was this precious baby boy...would he grow up to have a blank stare in his eyes? Would he not be able to communicate? Would he ever be able to have fun? What would our family think about him? How would people respond to him... or stay away from us... now that we had a special child. I recall Eddie and I saying “I guess we will never get to go to Disneyland with him.” I’m not sure why we thought that, but somehow, we must have thought the days of family fun were over...

We were somehow trying to absorb this news when I started thinking out loud “It must be my fault... I’m not a good mother... I yell at my children sometimes...I must have done something wrong.” I will never forget my friend Lora, who was with us at that moment taking my face in her hands and saying “Cindy, we’re not going to go there... it is not your fault.” She went on to just “be with us” that day, loving our baby, letting us process our feelings, and sometimes just being quiet. We moved from our initial feelings to concern for his failure to thrive because of his delay in his suck/swallow/breathe issues.

When we went back to the States and made it through the health crisis, a family with an 11 year son with D.S. came to visit us. I will never forget that day. As we got to know them, I listened to their story and took in everything about their son. I asked him which video he wanted to watch with our daughter, Coco. He chose one, sat and watched with her. I offered him some brownies and asked which one he wanted... the ones with m&ms or without. He confidently told me “I’ll take the m&m brownies.” In the next breath, he looked up at the light fixture and said “You got a light out.” I was quite impressed with this boy... my very first person to meet with Down Syndrome. He was pleasant, humorous, able to make choices, enjoyed watching the video, and seemed quite happy. His parents told us their story. I remember the Mom saying “If I knew what my son was going to be like now, I would never have cried...” They were so real with us with their joy and their challenges... At the end of our visit, I told Eddie “You know, this 11 year old boy reminds me of our other son who is about 6. I can live with that.” It really gave me a vision of what James could be like. We will always be grateful to the Pentecost family that helped us that day. It was our turning point. We then had an idea of what James could be like... of what we could look forward to. By the way, we did go to Disneyland with James and the rest of the family after all... he was thrilled to see Pooh and Tigger... a good time was had by all.

1 comment:

charity matic said...: Dear Eddie and Cindy,

Thank you for sharing from the heart. It is so refreshing to hear of how the Lord is bringing you through challenging blessings (blessed challenges?). I am sure you are learning from and growing with Bops/James everyday. Do let us know should you ever find yourselves in Disneyland again. We would love to see you guys!

Charity and Noel Matic in L.A.; February 7, 2012 at 11:42 PM

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First Entry

When our fifth child was born, Cindy and I embarked on a new journey that was not something we would have chosen.

We were expecting our fifth child and we knew it was a boy. When you are expecting a baby there are so many hopes and dreams for that child. We had chosen the name James for our baby. I love the name James. There is something very classic and dignified about it. There are more American presidents with this name than any other name. In the NT James wrote one of my favorite books and was the half brother of Jesus. Naming a child carries many hopes and expectations for his future. Fathers dream of their sons growing up and doing something of great significance. With these thoughts in mind, we had our name ready.

On July 1 James was born. They brought the baby out and I unwrapped him to count toes and fingers and make sure all was ok. Several hours later the anesthesia from the c-section was wearing off and Cindy asked to see our little guy. The nurse brought him in and handed him to me. I held him up for Cindy to see. She stroked his forehead and then asked, "Eddie, is he ok?". I assured her that he was fine. I had counted toes and fingers and they were all there. Then she said, "He just doesn't look like the other children." I felt this dagger go through my heart. She saw something that I had not. Even as I tried to assure her that her fears were unfounded, I knew that a mother's intuition is something that is not to be ignored. They took James back to the nursery.

Later that day we had the moment with our doctor all parents pray will never come. The door opened, our pediatrician walked in. The spirit in the room changed. The gate of her step, the tone of her voice and her demeanor alerted me that something was wrong. I asked if everything was ok. She responded that the baby was doing well, and then the pause. It was a pause that lasted forever, one that you felt in the depths of your soul. "The baby is doing well...but, there is something we need to talk about." And then the news we all pray we will never hear. "I think your baby has Down Syndrome."

Our lives changed forever that day. Having a special needs child is not a problem that gets resolved and then goes away. It is a heaviness, a burden, a challenge, a set of life time limitations, a fog of uncertainty that is never going to go away.

There is so much more to say about those first few days. That will be for another post. What we did not know, that we know now, is that with special challenges also come special joys. Within this world of imperfection and struggle are some very fun times. The truth is that God has and continues to teach me so many things through my special James.

I have learned that an infinite God does not just love the smart and perfect.
I have learned that love for a child is not more because one is smarter than the other.
I have also learned that you can be both retarded (it took me a long time to accept that word in reference to my son) and smart at the same time.
I have learned that there is a special charm that goes with special characteristics of a special kid.

I have called this "MyBopsBlog" because up until James was 11 years old, he referred to himself as "Bops". He learned to write his name in school. J-A-M-E-S, written on his paper and we would ask, what does that say? He would answer with great confidence "Bops". He would introduce himself "Hi, I Bops." Somehow, I always found it so charming. This year, "Bops" has given way to "James". Even though our little guy is growing up and can now say the name we chose for him, "Bops" will always have a special place in my heart.

He is always coming up with cute and fun statements. I hope to share some of those on this blog.

MyBopsBlog

Monday, February 6, 2012

Overwhelmed with the Diagnosis...

1 comment:

James Lyons

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