A huge bump in the road that we never saw coming

As most of you know Katie wears glasses. She was diagnosed at the age of 2 1/2 with Amblyopia, which is where one eye is significantly weaker than the other. For the past 2 1/2 years we have been patching Katie's good eye on and off, in the hope of strengthening her weak eye. Each time we have patched for a period of time her eyesight improved, only to deteriorate during the months that it remained unpatched.

Two months ago, her eyes had weakened again and the Doctor, who is excellent as well as a family friend, told us that we may have to patch again but that they would strengthen her lenses in the meantime in hopes that it would be enough of a fix that she could avoid the patch. We returned almost a week ago and as we sat and observed the exam, my heart sank. I knew that her eyesight had weakened further. The doctor was quite concerned and he dilated her eyes just to make sure that he was seeing the whole picture. When you dilate a young child's eyes, it is very difficult to really get the kind of visualisation of the eye structure that you get with an adult, since they cannot hold the eye positions needed for very long during the examination.

Marc and I had gone to the exam together (in separate cars) since I had to get to work earlier than he did and he was planning to take her to camp straight from the exam. Once the exam went longer, I left to get to work asking him to call me the minute that the exam was complete. The minutes ticked by and all of the sudden it was well over an hour since we were together. I knew something was wrong...I just felt it...

When I finally heard Marc's voice my fears were confirmed. The doctor was able to view the periphery of the retina and found evidence as to why Katie is not getting better. Unfortunately, it was not an answer that we wanted to hear. There were flecks of material on the far sides of the retina; yellow in color. His concern is that it is a condition that falls under a group of eye diseases called Retinitis Pigmentosa, that will lead to loss of vision and ultimately for many...blindness.

Our doctor has referred us to the best eye institute in the country, which is in our own backyard here in South Florida. The doctor who will be overseeing her case is also considered to be one of the best retina specialists in the world. Katie will be given a test under general anesthesia called an ERG (Electroretinography), which is like an EKG for the eye. It will be a two day process that is already scheduled and it will take place about a month from now. You cannot imagine the process it was to get it done that quickly.

Needless to say....we are VERY upset! We are keeping it together for the kids sake but my anxiety level is through the roof. Every time I think of this child, who takes such delight in every thing that she sees around her, losing that ability.... well....all I can do is cry. Katie lights up the world around her and all I want right now is for her to continue to see the light. If the news is bad once the test is complete, we will do everything in our power to try to find a way to forestall this from happening to her. If we cannot...then we will deal with that too. I cannot believe that I am even journaling this. It is like a bad dream that we cannot wake ourselves from.

I am actually doing so for three reasons; to keep a record of this for Katie and ourselves and to help me to process it; which I do through my writing and also to implore upon all of you to get your children screened early. Sadly, we have no knowledge of Katie's background and heredity. Many of the eye diseases that come under this heading are passed along through the genes. There is no way that you can know where there may be a problem unless you screen for it.

Finally, I ask that you say a prayer of you pray and if you don't, then to send your positive thoughts for our daughter. This is one more bump in the road for her; albeit a huge one. We need all of the friendship and love right now that we can surround her with. She knows nothing about this now and we will talk to her just before the test to prepare her for that. If our fears are realized once we get the results...we will deal with that too. I just don't even want to go there yet.......

Our sweet baby is really struggling right now.

While watching the "Big Bird Goes to China" DVD, Ethan decided to begin round two of questioning about his background. I have to tell you that I am pretty shocked that our happy go lucky little guy is the one that is looking for so much clarification at such a tender age.

I am not going to go into the whole conversation again but it started with some questions about being a baby in China and where he lived. That led us to him asking about the mommy who had him in her tummy. He was really quite probing during this line of questioning and he was very upset with this conversation. He was quite concerned about the fact that there was someone who brought him to the baby house (orphanage) and left him there. I explained it was because he was so ill and that they knew that he needed to make sure that he got the help that he needed and a family that would love him forever. He was really stuck on this and it made him feel so vulnerable. This just broke my heart. He then asked me if we would take him to a baby house and how long he would be with us. I explained that he would NEVER again be in a baby house and that he had a mommy, daddy, sister and brother forever! He wanted to know what would happen when he grew up and I told him that he would be a grown up like mommy and daddy and that he would probably have his own family...wrong answer! He was so upset by the fact that he may not always have us so I told him that he would always be with us as long as that is what HE wanted. He then kept hugging me and saying "I love you...Wo ai ni"...over and over and over. He had been listening to the "Wo ai ni" song in the movie, so I am sure that is why he was using the Chinese phrase for "I love you" during his admonition of love.

We held onto each other for a long time and then he pulled away and finished the movie. I was completely humbled by this little boy who is obviously dealing with some pre-verbal pain that he needs to address in his own way.

Tonight, again he started talking about the same subject at dinner but in much less detail. This discussion passed pretty quickly. It all seems to be just under the surface right now.

Finally, we put the DD to bed and we settled in for the night, once again Ethan came out to speak to us and he was in tears. He was crying about not having dessert tonight which he lost due to not eating his dinner. We spoke about why he did not get dessert and he still seemed very upset. I asked him what was really bothering him. Ethan never comes out like that and he almost always falls asleep within a few minutes of being tucked in. He sobbed that he always wants to live with us and that he really loves me and he is going to marry me. We told him that he was always going to be our son and that we are never going to leave him. He calmed down again. We talked for awhile about things that would lighten his mood and I tucked him back in.

The fact that he was 2 1/2 years old when he was adopted and 6 months old at abandonment certainly factors into the very real pain that he is dealing with. I think he has some vague memories as well as imprinted pain that he cannot really process. Katie may have dealt with a great deal of her pain the first year that she was home during a very tough attachment phase.

For now, we will just take it a day at a time and address the questions as simply and openly as possible. We are also open to asking for professional help if we see that his struggle is greater than we are equipped to handle. We will do whatever it takes to help him along this painful journey.

I know that I am probably rambling on but I wanted to document it quickly. Our day was a bit stressful for some other reasons but I needed to get this on the blog, which is the journal of our journey through this life together as a forever family.

Wow, the questions are coming fast and furious!

Just when I thought I was safe for awhile from the tough questions..all of the sudden they came from an unexpected source...Ethan!

Being a boy and a bit behind Katie in terms of development, I did not expect any questions from our mischief man for awhile. I should have learned by now to never underestimate him and to expect the unexpected!

Tonight, Katie was watching some TV before bed and I was in my bedroom when suddenly Ethan came in to talk to me. He immediately launched into his own series of questions about babies....

"Mom, how small was I when I was a baby?" (he places his hand near his knees to show me the size he thinks he was)

"Very small Ethan...just like Ari." (our Godson who was just born)

"I don't remember being that little! How come I don't remember that?"

"Most people do not remember when they are that small sweetie."

"Was I little like Ari when you "dopted" me?" (His version of adopted)

Again with that same lump in my throat I replied "No baby, you were bigger than Ari." (Ethan was two and a half)

"You dopted Katie too when she was a baby?"

"Yes"

"Where was I when I was a baby?"

"In China"

"Were you there?"

"No E, you lived in a baby home (an orphanage) with many other babies who were waiting for their mommies and daddies."

"Where are the babies that lived in the baby home...are they dopted?" (OK, now the lump is about the size of an apple)

"Yes, many are home with their mommies and daddies" (Thinking not nearly enough of them)

"Do you know their names?"

"I don't know all of their names but I know some of their names and I know their mommies and daddies too."

"What are their names?"

"One of them is Cami and one of them is Julia. Ethan, do you remember living in the house with a lot of babies?"

"No."

At this point it is obvious that he does not want to go any further with this line of questioning as he starts to talk again about being as little as Ari and he giggles at the thought of being that small.

"Bye Mom." He leaves the room and me to gather myself and my thoughts.

My first thought was....never underestimate the mischief man.

Love you my sweet baby....one of my greatest wishes is that I could have held you in my arms from the minute that you were born....

Searching for answers

I picked up Katie from camp first today and as we were driving to pick up Ethan the discussion of babies came up again. Initially, it focused on a set of twins that are in Katie's camp and the fact that they were in their mommy's tummy at the same time, as Katie pointed out to me. She then said that it "must have been pretty crowded in their mommy's tummy!" I agreed with her. She then added "It was not crowded in your tummy Mommy, since it was just me in there." I reminded her (with a lump in my throat) that she was not in my tummy...she was in another lady's tummy in China.

"Who is that lady mommy?"

"I am not sure Katie but I think she was a very wonderful lady since she was the one that gave you your life."

"Why didn't she want a baby, she must not have wanted a baby right mommy?? Why didn't she keep me?" She did not sound upset; she just sounded curious.

"Katie, things are much different in China than they are in the United States and for some reason that I do not know, she could not keep you."

"Why couldn't she keep a baby? Why are things different in China?"

"There are many reasons...life is very hard in some parts of China and it is very hard for some people to keep their babies."

"Why is it hard there?"

"It is hard because of many reasons. It is hard for people to be able to feed their children and buy clothes for them in addition to taking care of them properly. There are many reasons why it is hard but I know in my heart that she cared very much for you. She made sure that you were born and then she found a safe place to bring you to until we could come and get you. Then a wonderful foster family took care of you until Mommy, Daddy and Justin could come and get you. Remember I told you that Mommy and Daddy adopted you and we wanted you so much? We asked the officials in China if we could come and bring you home so that we could be a family forever. You and your brothers are our life and we held you in our hearts until you came home."

"Then you adopted Ethan and I came with you to get him....you love us so much!!"

"Oh yes, more than you can ever imagine...."

and then she changed to subject...she had enough for now; probably more than enough.

Another step on the road to realization.......sigh.....

Our Little Guy is a Whole Hand Today!

Dear Ethan Frederick Zhiqing,

You are 5 years old today and so we have lots to celebrate! We celebrate the amazing boy you are and the fact that you are a part of our family; a very special part!

You are our third child and the child that completed our family. You are our treasured mischief man. The boy that has found a special place in the hearts of all who know you and most especially those who are able to call you family. All of us marvel at your strength, tenacity, humor, kindness and your beauty. Actually, we are all in awe of you and how far you have come in these first five years; especially since you had to fight so hard to survive your first two years of life. Fight you did though and your fight rewarded all of us with the love of this forever family that we cherish so much.

Thank you for fighting so hard!

We know that you will do amazing things in your life and in the lives of others. We look forward to every single day with you and as the years march by we will be here to celebrate every birthday with you and to see the gift of your bright future unfold.

Love forever and always,

Your family,
Mommy, Daddy, Katie, Justin and Judy
Nana, Papa and Grandma

Silly

Bandz that is...if you have a child then you know what I am talking about. Those colorful and pliable bracelets shaped like anything that a marketer can dream of; from princesses to hippos and it seems everything in between. Sometimes it is a bit tricky to identify the shape but the kiddos seem to have lots of fun trying!

Katie and Ethan have suddenly been bitten by the silly bug. Katie seemed mildly interested over the last few months but now she really likes them and so when she scored a pack of princess ones and Ethan got a pack of T*y Story bandz from a dear friend, well let me just say that NOW they are REALLY into them.

Katie walked into our room with half of her mother load on one wrist and the other half on the other. She proudly displayed her bracelets to me. When I suggested that it seemed to be quite a bit to wear at one time (I know...way to sensible) she looked at me like I had two heads, sighed and left the room. Of course, that gave me a glimpse into the future that seems a bit too close for comfort.

Then to add insult to injury, the E man came in with all of his bandz on one wrist....
haute couture for sure.

For your viewing pleasure!

Oh and one more thing....I will do my best not to stay away so long again ;-)