Tuesday, October 14, 2008

31 for 21: Contagious!?!

Thanks to my friend RK for sharing this!  (Click on her name to visit her blog and see her cute little Braska!)  It was too good not to pass on - and every bit of it so very true! 


Newsflash: DS is contagious!! Keep reading!!

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, picc lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Wendy Holden




Prayer request for our sweet Daniel

Hi friends,

Would you join me in praying for our sweet 4yo boy. We had what I thought was going to be a routine visit to the eye doctor today. The appts with Rebecca and Joshua went smoothly. Joshua's vision has improved with the continous patching he has been doing!  The appt with Daniel took longer.

We talked and I had shared some of what had been going on with Daniel regarding sensory issues.  I wasn't sure if she knew what to make of that - but then again lots of people don't.  She even commented that my last two children were giving me a run for my money. 

As the appt continued, she just kept looking and looking into his eyes. I thought it was just because he was wiggly (he was) and maybe not cooperating as best he could. I didn't realize that she was looking for something specific and having a hard time finding it.

When she finished the exam she told me that she could not find the outline (may not be remembering the words exactly right) of his optic nerve in one eye because it was swollen. She said it had been difficult at times in the past, but that she had always found it. Well, this time she couldn't. As I sat listening to her, I really had no idea what she was talking about or what this could mean.

Her next words though sent a chill through my body. She wants Daniel to have an MRI to see if there is a mass or ??? causing him to have a swollen optical nerve. As her words sank in, I could feel tears coming to my eyes.

We talked about details - when would it be done and where (Duke). What the process entails (40 min scan of his brain inside one of those tubes) and would he be sedated (yes!). As I worked on details, it was easy to let go of the idea that something might be wrong in my little boy's brain. She tried to assure me that she didn't think that there was anything, but that we needed to do this to rule it out.

I didn't ask a lot of questions about what this could mean. A "mass"? I don't know. I wasn't sure I wanted to go there. At times, the details can just overwhelm me and I'm trying to just be reassured by her thoughts that everything is probably fine. 

Daniel also has a malformation of his skull (it has a name ... cranio ... something). His ped told me when he was a baby that we could have it repaired, but that it was purely cosmetic and wouldn't affect him in any way. I took his word then and didn't ask for any further testing. Now I'm wondering if I should have done more.

I'm trying not to think about it because when I do it's scary. One more opportunity for me to learn to trust. To be willing to put my child into God's capable and loving hands. He is there anyway - I just need to trust. I know Gods love and I'm thankful for that.

We have scheduled an MRI for the 27th at 2pm. I would love your prayers - for peace for us while we wait, for a smooth procedure and clear results. Obviously too we are praying that there is nothing wrong with Daniel.

Thank you dear friends for standing by me once again.