Monday, February 13, 2012

Our New Reality..


Cindy's Post #3  


Our New Reality.. When Others Don’t Know What To Do or Say
As we made our way through our new reality, we continued to go to doctor’s offices, visit therapists, and find out what we could do to help our baby.  We had so much to learn in such a short period of time.  We were so grateful to the Regional Center  and DCO in Springfield, MO that taught us all about Early Intervention and what therapy to look for. They gave us a list of good books to read, and were so helpful and hopeful as they led us down our new path.  
Our friends and family were very supportive and kind as they learned to love James.  A few acquaintances had some responses to James’ diagnosis that were really made out of ignorance and just not knowing what to do with our new reality.  I will never forget the day that we were in a doctor’s office waiting for him to see our little guy... I got up to read something on the bulletin board that gave me some very wise counsel. The article talked about what to do when people don’t know how to respond to the fact that you have a special child.  Sometimes when you are out in public, people struggle to know what to do or how to talk to you.  I personally think they just have never met anyone with Down Syndrome or whatever disability they are facing.  They don’t know what we know. That our child is precious... that he is not primarily identified by his disability... he is James.
The author went on to say “Whenever you see that people don’t know what to do or say,  YOU model  it for them... that you love your child... reach down and give him a hug...or a kiss... and smile... let them know that you are ok with this.... you have grace for the situation and then smile at them.
When friends ask about your child or if they say the wrong things, just realize that they just don’t know... they have never had to deal with it.  So again, we, as parents need to model for them what to talk about.  They may keep saying “I’m so sorry, so sorry you are having to go through this...”  When this happens, accept their attempts to talk with you, however, you may need to lead the conversation.  Tell them something positive with regard to your child’s development and progress.  Providing a positive talking point helps to overcome the awkward moment and gives direction for a conversation. I remember saying “Well, this week, we have been learning all about Early Intervention and the therapists have been so kind and encouraging.  He is starting to gain a little weight, so we are very grateful.”  Not everyone has the grace or the capacity to know all the details that you are having to deal with... and that is ok.  We can show people with our spirit and actions how to deal with the news and the new reality.  If we are having a hard time with it that day, be honest with friends and say, “You know, we are having a hard time dealing with ___________, but we just love him so much.”
Ask your friends for prayer.  We don’t have to be up all the time, but we can’t expect people to know exactly what to do and say.  We need to extend grace to them... they don’t know YET what a great little baby you have...Just think, by seeing you with the special grace that you have for your child... you might have just changed their ideas about families with special needs children.

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.