Christmas Again-Update

Ok-clearly I haven't updated the blog in a while. Over the holidays enough people have asked about the blog that I decided to pull myself out of hibernation. I kind of froze up on the blog because I didn't know what to write. I haven't really known what to say. I feel like I should be writing about defying the odds or huge amazing miracles or even news of something that turned things around for Seren. I think we all initially hoped that Seren would have some sort of mental development or some sort of awareness. That isn't going to happen. When I look back at my initial posts it is almost painful how much hope I carried. As time has passed, it has become clear that Seren is permanently and profoundly impaired. I think she most accurately could be described as in a permanent vegetative state. She doesn't respond to her environment. She does have periods of sleeping and waking, but she doesn't smile or respond to stimulation. She does not have the slightest bit of development, nor will she. It's difficult to explain to people. Its uncomfortable for people to hear and understand. It is incredibly sad for everyone. Its kind of hard to put that out there.

I do have one plug-something that almost made me blog again a while back-

If you wish to understand the perspective of a mother with a profoundly impaired child and the impact it has on a family-I highly recommend Before and After Zacharia by Fern Kupfer. Fern wrote this book in the 80's. In fact, Zacharia was a year younger than me. Fern gives a no holds barred account of her feelings and the impact of Zacharia on her family. The only real difference in our stories is that it took their family two years to determine what was discovered about Seren in two weeks. (Note: their conditions are not the same but their level of impairment is similar).

Most people can't begin to understand what its like to be me. Fern explains a mother's perspective bravely and perfectly. I warn you, its not a feel good story, but it is a good story, and one that isn't told very often. Parents in a difficult situation should have choices. Fern explains the choice that both she and I made. There is no judgment of any other choices. I contacted Fern via email and she has been a huge encouragement to me.

We are all doing well, and counting the blessings we have, as we find them. Sorry it has been so long- but Merry Christmas to all and sincerest wishes for an glorious holiday season.

J

Stepping Stones

I realized I never posted the stepping stones that we made Lance for Christmas. Although I'm sure no one is going to be seeking me out as a toddler art teacher, we had a great time making them! The top one is Gray's free form interpration, the bottom is Seren's butterfly. It's more difficult getting footprints in wet plaster than it looks!

Happy Sunday!

Krispy Kreme Challenge

So, in 2004 some crazy students decided to run the two miles from the NCSU Belltower to Krispy Kreme, eat a dozen donuts, and run back. Its now turned into a "thing"- a huge thing actually. 6000 People huge. This year was super cold but filled with super excited and insane people. Three of them were Lew, G and me! We just brought our donuts home instead of downing them during the race but it was really fun. We have no pictures because we had not one single electronic device with a charge (not surprising). Another nice thing about the race is that it benefits NC Children's Promise at UNC Hospitals where Seren was in the NICU and had her recent surgery. It was a fun start to the day thats going to end with a hopefully very successful Casino Night!

North Hills Club Casino Night benefitting Hilltop Home for Children

I have talked repeatedly about the amazing facility that provides care for Seren. I know that I can never repay them for everything they have done for our family, nor, for various reasons, have I ever stated their name on this blog. However, I now have a compelling reason. Hilltop Home for Children has been in Raleigh since 1963 and has provided amazing care ever since. Hilltop is a private facility, but cares for children as a 501(c)(3) regardless of the amount the individual family can pay.

North Hills Club is a swim and tennis club in Raleigh that hosts a charity casino night each year. The membership votes on the charity. I was shocked, yet pleased beyond words, when this year Hilltop was selected as the beneficiary of this event.

The event is open to the public and will be this Saturday, Feb. 6 from 7:00 p.m to 11:00 p.m. The event is held at North Hills Club in Raleigh located at 4824 Yadkin Dr., Raleigh, 27609. You can call (919)787-3655 and pay for your tickets via credit/debit card. Tickets should be purchased in advance. Tickets are $50, $30 of which goes directly to Hilltop Home. If picking up tickets is a problem I will be HAPPY to get your tickets and get them to you the night of the event. You can email me at jenniferrader@hotmail.com and I'll make arrangements with you!

Further, there is also a silent auction at the event and all proceeds go directly to Hilltop Home. We have a great committee getting this evening underway and we have some great auction items this year. We have beach houses, hockey tickets, panther tickets, theater tickets, even autographed Peter, Paul and Mary C.D.'s for the music lover in your life:)

Casino Night is a fun evening with craps, blackjack, Texas Hold'em and more. If you want to attend we would LOVE to see you there.

I am proud to be raising money for this amazing organization, and the even more outstanding people who comprise it, even if it will fall short of ever truly representing how much they mean to us and all the other families that they help.

Hope to see you rolling 21!

xo, j

Update

We've had a sick little boy around here the last few days so I haven't had a chance to provide an update on Seren's surgery. The short version is that it went totally fine. Her heart took the anesthesia just fine, and she started taking her normal formula through the new tube within twelve hours.

The thing that is difficult to explain, or to even grasp when you see it, is that Seren's mental capacity essentially means she is almost entirely unaware of anything around her except her comfort level. This means that Seren generally doesn't know where she is or what is going on in a cognitive sense. She does respond to her environment, but not in the sense that she sees something and thinks "that's a noise", "that's a blanket," "that's a face" etc. This is of course, the saddest part of her diagnosis. Her severe disabilty also means she doesn't "suffer" in the sense that the surgery would have been a traumatic event for her. With a child like Seren, the difficult thing in this situation was determining whether she was in pain or not. She was generally very peaceful in the hospital which was comforting. When she cried was it just a cry, or was it pain? We made sure she got medicine, and used information from people who have had the surgery before who are able to communicate to determine what type of medicine she needed. My goal was to keep her as comfortable as possible, and return to her to her home quickly. Although there is no real proof, I think she does better in a familiar environment. Its just my mother's instinct that she does better with the least "information" thrown at her as possible, so I wanted her back at her facility asap (plus, I trust them more than I trust anyone else). So, to that end, baby girl is back to her facility and doing just fine. I'll post a picture with her face tube free soon!

It's eight o'clock and all is well....

We are all back to our respective dwelling places. Everyone is safe, snug, and, in Seren's case, doing well post-op. We're all super tired so more details will have to wait until tommorow. Nighty, night everyone.

Pre-Surgery

So-it seems that the day of surgery is almost upon us. Since the procedure is considered "elective" I'm expecting to get tossed about a bit. We were originally told that the procedure was at noon, and that we needed to get to UNC at 10:30. We've already received notice that the schedule has changed and we need to be there at 6:00 for a 7:30 am procedure. Good thing I'm an early riser!!! Here's hoping that this means that S has less of a chance of being bumped off the schedule. The surgery is only scheduled for 45 mins. so by the time most people are getting their day started we should hopefully be in recovery with the whole thing behind us! Thanks for all the thoughts, prayers, emails and hospital goodie bags. :)

xo,

J

Welcome 2010!

The Windley family is seriously excited about putting the last decade behind us! It took me a while to realize that instead of just a new year we were saying goodbye to the 2000's (what do you call that-the millennium decade or something?) Ten years ago, I ushered in 2000 in New York with a bunch of friends from law school and graduated and got my first job later that year. I met Lance in 2001. This has been one incredibly eventful decade.

This year, we spent New Years Eve roasting oysters with some great friends. It meant a lot to me to be with these people who have been so wonderful and supportive of us in the last year, and whom we could just be ourselves around. It was a really fun evening.

On New Years Day, Lance took G "hiking" in the backpack over to see Seren. Once they got there, I went and picked them up. It was time for Seren to eat while we were there, and since Seren is fed through a tube and a pump hanging on a pole, we had to roll the pump with us to the family room. G was determined to roll the pole "all by myself," and bless his sweet little heart, he did it. It took a while, but he rolled it all the way there and all the way back with Lance carrying Seren behind him. I was quite proud of my sweet and determined little guy. It was great start to the next ten years.

xo