Midian Ranch Blog

This is the web log for Midian Ranch, an isolated homestead in rural Nevada. It is owned by Jason and Tina Walters, whom are also its regular posters. This blog is exclusively for the enlightenment and edification of our friends, family, and colleagues.

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Location: Gerlach, Nevada, United States

Saturday, September 05, 2009

“The Kid's Alright, And The Kid's All Right”

These words of wisdom were spoken by my wife Tina a few days ago and I think them to be true. But before I explain, let me take a moment to confirm something that many of you have already guessed: things didn't go smoothly with Cassidy's birth. She's still in the Renown NICU (Neonatal Intensive Care Unit) in Reno thirty days after her birth, though her condition is greatly improved at this point. I am fairly confident that she will be released shortly, though these things cannot be rushed and are in all ways beyond our control. Cassidy will decide when it is time for Cassidy to go home, and there is little Tina, the doctors, or I have to say about it.

Before I continue, I would like to thank all of you singularly and collectively for the congratulations, goodwill, and – in the case of those of you familiar with the situation – advice and support you have had to offer over the last month. In particular I would like to thank my family, the Tina's family, and the people of Gerlach, Nevada for your support and encouragement. I would also like to thank our friends and colleagues at Hero Games, Indy Press Revolution, Blackwyrm Books and Games, and Flash Messenger for your support (and patience) in our time of trouble. When I can I will take the time to thank many, many of you personally, either by phone, email, or in person. I am sorry that I have not done so already.

This has been the hardest month of our lives. For the first few weeks we were, to be blunt, as crushed as a pair of beer cans unfortunate enough to encounter John Belushi's forehead. Tina has stayed by our daughter's side continually in what can fairly be called a superhuman act of motherly devotion. I have had to move back and forth between Reno and Gerlach in a not-always-successful attempt to keep our affairs in order. But we've already cried our tears over things we can't control and feel confident in our ability to move forward, doing what is necessary to help our daughter have a happy, independent, and successful life.

The Bad (what went wrong and why)

Cassidy was born with the chromosomal disorder known as trisomy 21: better known as Down's Syndrome. As is not uncommon with children suffering from Down's, she was born with a heart condition (two actually; one major, one minor) that caused her blood to oxygenate poorly. She quickly contracted pneumonia, which led sepsis, as her immune system was not fully formed (though Cassidy wasn't born prematurely). The first two days were extremely touch-and-go. She nearly lost her life. Then she spent the next two weeks intubated and on morphine being fed intravenously and through a tube.

The experience was extremely heart wrenching on many levels, some of which I've only begun to grasp.

The Good (what didn't go wrong)

Cassidy is a reasonably big baby: eight pounds, one ounce at birth, about nine pounds right now. Her size may have been what saved her. She has recovered completely from the pneumonia and sepsis. Her lungs are functioning well, her major heart problem seems to be sorting itself out. The minor one will probably take care of itself as well. She's quickly getting the hang of eating on her own. She's still on low-flow oxygen, but she should be off of that within the month (we may take some equipment home with us). Her eyes are open, she seems alert, and is all-in-all a cute little sucker.

There are many health problems beyond the developmental and mental capacity issues associated with having Down's Syndrome. (As much as one can be said to “have” something that isn't really a disease.) She's had a couple of them already: heart problems and pneumonia, to be specific. However, thyroid malfunction and poor muscle tone seem not to be issues (though the tires quickly). Her vision seems good and I think her hearing will turn out to be within the normal range as well.

Down's Syndrome has extremely variable effects on the individuals it afflicts, with no two cases being exactly alike. We are optimistic about her intellectual development, which we can and will have considerable influence on. Though there is a small chance that she will be severely retarded, mild or moderate retardation is more likely, with hard work on our part as parents reaping measurable rewards (as is true for any parent). There is even a tiny chance that she will suffer from no retardation at all, though this is unlikely.

Observations

I want to thank the many of you who have contacted me with information about friends and family members with Down's. I knew little about the syndrome before Cassidy was diagnosed with it, and am heartened to learn that there are professional chefs, stockbrokers, housewives, motivational speakers, successful actors, and college graduates with Down's. I was also encouraged to discover that the average life expectancy of a person with the disorder is currently 65 and expected to climb higher (100 years ago it was, rather shockingly, 9). I also wish to thank the many of you who have prayed (and, in the case of at least one friend who is a Buddhist, chanted) for the well-being of our family. I believe it has helped.

I have met several remarkable people in the course of this experience – people who, in our time of pain and distress, worked hard to calm and assist us. I would like in particular to thank Linda from the Nevada Bureau of Early Intervention Services, Randy from Renown's Social Services Department, JoD and Darnell from Reno's Ronald McDonald House, and Mrs. Anderson from Reno's branch of the Social Security Administration. I would also like to thank the NICU nursing staff at Renown Medical for their professionalism, understanding, and the tender care they have given our daughter.

I have had many insights into life, my own shortcomings, and the power of love in the last month. As time goes by I will share them with you. But, for now, keeps us in your thoughts and prayers.

8 Comments:

Blogger mabon5127 said...

Thanks so much for sharing this with us. Cassidy was placed with the right family. I can't imagine anyone better to raise her. Love you guys and we will keep praying.

Morgan and Family

3:48 AM  
Blogger lemming said...

Thank you for the updates. Cassidy, Tina, and you are in my thoughts.

-Mark

5:06 AM  
Blogger Hazardgal said...

Glad to see you come up for air! Will continue to pray for you all. Somewhere I have a book by a British author with Down's Syndrome. Amazing things can and will occur for Cassidy.

They should call it "Up's Syndrome"; that might be more like it.

8:35 AM  
Anonymous Anonymous said...

You guys are the best, and baby is beautiful, of course. I know things will work out just as they're meant to. Keep loving on baby Cassidy, and each other. I'll remember you all in my prayers. Beth

2:58 PM  
Blogger Susan said...

This comment has been removed by the author.

5:13 PM  
Blogger Susan said...

I grew up with a kid with Down's, and she made it all the way through high school and college with only minimal learning issues. Her parents worked with her constantly, and gave her enough room and time to be a normal kid around other children, and consequently she developed with a good understanding of her life and also of the work necessary for her to achieve her own goals.

You two are pioneering, intelligent, and blend your love of freedom with your love of intellect in a way conducive to helping Cassidy achieve in life.

Congratulations! I hope your girls will be home soon.

5:13 PM

5:19 PM  
Anonymous Anonymous said...

Dear Jason and Tina,

I have worked with many children and adults who have Downs. Cassidy will need early intervention and I know that she has two completely devoted parents who will be amazing advocates. A great resource for sensory stimulation products is a catalog called Abilations. Do not hesitate to call or write for advice or support. I know you have a lot of support already but you can count on me and Rob to help. The NICU is not a fun place to be but on the flip side you will not find another pack of doctors, nurses, and social workers, who are more devoted. Happiness and grief are funny emotions that go hand in hand. However, pretty soon, the happy times and the love and unique experiences that you will have with Cassidy and her ability for learning and growth will take over. You are all in our thoughts and prayers and if my experience and education can help you in any way I would be honored to provide you all any support.

Love you all,
Melinda and Rob

4:58 AM  
Anonymous Rod Currie said...

I think you and Tina are going to make fabulous parents.

9:55 AM  

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