Friday, October 29, 2010

Happy 3 Years Ethan!

It has been three years since we adopted our sweet mischief man in China. On October 29th, 2007, we entered the JiangXi Civil Affairs Office and were shocked to find a very fragile, weak and quite delayed little guy waiting for us. He was so afraid and we were very afraid as well. Somehow and someway, day by day, we were able to help our little guy get healthy and strong. We were able to give him the tools to transform into the amazing little boy who has completed our family. As much as we gave to Ethan, he gave us so much more. He gave us a stronger will, courage to face the unknown and the gift of watching one of the strongest and most resilient children that we have every known. He has beaten the odds and he continues to surprise us daily with every new milestone reached.

There are still remnants of the damage that was done to his psyche through his neglect in China but we can see that he feels very loved and mostly secure that we will always be there for him...always and forever. We pray that someday it all falls away but even if it does not, we do know that his future is very bright!

Happy 3 years Ethan Frederick Zhiqing! We love you with every fiber of our being; just as we do your sister and brother.

Always and Forever,
Mom and Dad

Tuesday, October 19, 2010

Trying to be strong for our daughter

Tonight I was reading to the Dynamic Duo before bed. The book that I was reading to them was one that Katie could definitely help me with since her reading is really coming along. I asked her to read a couple of sentences and she strained to see the page. She put her face all the way up to the page so that she could see and she was struggling big time! I asked her whether she could see and she became defensive and she said that she could see it. She definitely could not see it without being on top of it. I had to try my level best not to cry....I saved my tears until after she went to bed. I then had a big time boo hoo session. I needed it.

As I was brushing her teeth I told her that sometimes when people have a hard time seeing words on a page that they could learn an alphabet that they can feel with their fingers and they can read books that way. She asked me what it was called and I told her it was called braille. I asked her if she would like to learn braille and she told me that she sounded cool. I better take note of my daughter's positive outlook pretty quickly because all I could think at that time was that we were teaching her how to read the written word but that she may not be able to do so for very long.

I pray that this Friday when I take her to see the specialist down at Bascolm Palmer Eye Institute, that they are able to prescribe new lenses that will give her a greater field of vision for now and that they can do so for a long time.

I know that there are worse things and that it will someday be our new normal but I hate this. I hate it more than I can ever express.

Tuesday, October 12, 2010

The Ironies of Life

I had a memory come back to me last night in the midst of a fitful sleep.....

About four years ago, just after we made our decision to adopt again, we further decided to walk down the path of a special needs adoption. There was a lot to consider, not least of which was the existing family and responsibilities that were already on our plate but also, what did we think that WE as a couple could actually handle. After lots of soul searching, Marc and I came up with a "list" of the needs that we deemed to be "right" for us.

Within a couple of weeks of the search for our next child, our dear friend Mary saw a child on her agency special needs list that called out our name as potential parents. It was a baby boy from the exact same place that Katie is from; Wuwei, Gansu. He was such a beautiful child and the words underneath his name on their website gave a vague description of a special need. If I remember correctly, it was "uneven iris's." I remember being shocked that with such a benign description that this child was still available. The most minor of special needs always go very quickly. I quickly wrote to the agency to inquire about the boy. I was told that the description given by China was quite vague and even had conflicting facts so that we should proceed with caution when reviewing the file. We were the first email of several that they had received overnight that were interested in this child. They would allow us to review the files with our doctors but there were no promises.

We took the file to not only our pediatrician but to a Pediatric Ophthalmologist that my mother was employed by for many years. After so many years he seemed more like a family friend than a doctor. As such, he told us that the information provided was too vague to make a determination on his condition. He asked us to request more info if we could. We followed his instructions and asked the agency to make the inquiry, which they did. A new examination was then performed in China and the results of the exam were laid out for us in typical China fashion...again conflicting but this time with enough facts for us to come to a decision....

Our doctor informed us that with the type of condition that this baby boy had he would indeed by blind very quickly, if he was not already. In addition, the type of eye issue he had would likely be paired with another medical syndrome of some type. Marc and I were so upset to hear those words. We wanted the words to be untrue to make our decision an easy one. We so wanted to adopt this little boy from Wuwei. It would have been so sweet to have two children from the exact same place. We agonized quite a bit over the file for the next couple of days. Could we handle such a special need? Would it be fair to Katie and to our family as a whole? Did we have the financial resources necessary. The final answer to all of the those questions was a He was not our child. I sadly relayed that info to the agency including all of the feedback from the doctor.

The only consolation for us was that the family in line right behind us was already parenting a child with a similar special need and was interested in parenting this child. They asked the agency if they could speak to me in order to get more info on the feedback that our Doctor had given to us. The mom and I spoke several times and the last time that we spoke she was seriously considering adopting him but I will never know for sure. I never heard from her again. His picture never reappeared on the list though, so in our hearts we believe he was adopted.

I am a huge believer in fate and I totally believe that he was not meant to be our son and of course as it turns out Ethan was meant very much meant to be. Anyone that has seen our two youngest children together can tell you that they truly were "Beshert" the Hebrew word for meant to be.

The irony of it all still is quite startling. That same doctor who is a family friend was the first to detect Katie's condition and refer us to a specialist. He had to be part of giving us this sad news again. Thankfully he is a friend and he and his assistant Shannon are totally there for us!

What we believed that we could not handle has been handed to us again. The condition that Katie has may be linked with a syndrome and other medical maladies may follow. This will be determined when the DNA test shows us the bad gene that has caused this.

We not only have been handed this again, but thankfully we know that in our hearts that we not only CAN handle it...we WILL.

Sunday, October 10, 2010

Friends Helping Friends

I have had so many friends reach out to help fund raise in addition to other kind offers. Thank you to each and every one of you. Right now there are two opportunities to help by purchasing items.

The first is made possible by my friend Heather. Heather is an adoption friend with two beautiful daughters. She and I met online back in 2005 while we waited for her Abigail (Abba) and my Katie Starr. As you know Katie is from the city of Wuwei in Gansu Province China. Heather's second child, who she adopted a couple of years later is Kaylyn, who is also from Wuwei! Believe me when I tell you that this is not at all common. Gansu province is one of the rarest places in China to adopt from and Wuwei is even rarer. Our Wuwei girls have drawn these two Panda sisters even closer :)

Heather has decided to auction many gently used (with love) items that were both handmade and store bought to benefit the Foundation Fighting Blindness. What a beautiful effort and we are so very grateful. The auction ends October 12th and you can check it out here. Thank you Heather!

The other shopping opportunity is made possible by my dear friend Minouche. Minouche is also a friend that was made through the adoption world. We are a part of the same FCC group and we have grown to be close and trusted friends. She is such a supportive person and so it came as no surprise to me when she decided to donate 10% of the proceeds of some of her clothing line from her Online Etsy Shop, Yaya Kids Couture to the Foundation Fighting Blindness. Yaya is the pet name of her beautiful daughter, who our family loves very much.

She has a back to school clothing line as well as a Hanukkah line. Here is her Facebook Page, where you can purchase the clothing on sale this week. If you are not on facebook, then just email her though her Etsy site and she will give you the promotional price and will make the donation to the foundation. Thank you Minouche!

Here is Katie modeling one of Minouche's beautiful creations. You can be sure that she will be wearing this beauty this holiday season :)

The friends that I have made through the adoption world, both in person and online are very treasured. They have proven their friendship time and again. I know that they are all in this with us for the long haul.....until a cure is found.

Wednesday, October 06, 2010

Taking Baby Steps

That is how we are approaching how we communicate to Katie about her eye condition. I have consulted with a therapist that specializes in children and she has proved to be a valuable resource for us. Slow and steady will win the race.

It will be much like the adoption conversation; give bits of info and wait for further questioning. Only give her what she asks for and above all, do not answer any questions that we are not able to answer pretty quickly. Our answer to questions like those should be, "I really want to think about what you have asked me before I answer you...Let me go ahead and do that and then we will talk about it further. I promise I will give you the answer soon." Of course, we will answer the question as quickly as possible and when we are fully prepared to do so.

Our fear is that someone will spill the beans to her in a totally inappropriate way but the counselor make me realize that the odds of this are quite small considering she is very young and she is supervised by us most of the time outside of school. There is no real reason to give her the whole story now and terrify her unnecessarily. She is only 5 years old and is too young to be able to process this information properly. If this was going to happen overnight, then yes, we would need to prepare her immediately. As far as we know, Katie's eyesight will wane away slowly, giving us a great deal of time to prepare her.

The first bit of communication will be about the Vision Walk that we are participating in on 10/23. There will be a team of people and she will want to know why they are all there and of course since we are "The Katie Starr Team," it will quite obviously be about her. With the therapist's direction, we have decided to tell her the truth in a dose that she can digest. We will tell her that we are walking and collecting money to aid researchers to help people like her that have weak eyesight. We are hoping that the research scientists can find a cure so that her eyes and many other peoples eyes can be stronger. She knows that he eyes are weak so that is perfect.

In one of our sessions the therapist met Katie and was quite taken with her intelligence and openness. After interacting with her she assured me that if handled properly, Katie Starr will be able to cope with it and thrive despite it. I believe in my heart that she is right.

Another good piece of advice that she gave me was to try to enhance her other senses so that she can compensate as her sight weakens. Also to draw Ethan into it as well so that she does not feel singled out and of course him feel left out. We need to ask them to give us feedback on taste, smells, sounds etc. in order that they are challenging those senses. We will train them to more fully experience what is presented to us...not just "see" with our eyes. We can "see" with our ears, nose, mouth and touch. She has given me several exercises to do in order to accomplish this.

I feel that we are taking positive steps. Our next step is to meet with another specialist in a couple of weeks to get a better idea about timelines and things we can do in the interim to help her preserve her sight as long as possible.

Baby steps are doable. It was that slow old tortoise that won the race against the speedy hare. Taking it slowly will help us to prevail in the end as well.