Friday, July 23, 2010

Kaity Belle

Ever since I started getting back in touch with old friends via facebook (I LOVE facebook) a few people have privately emailed me to ask about my daughter Kaity. Some have been afraid to ask, some say that they want to know how she is doing but are afraid to ask and some people have said that they just have never known what to say or if I want to talk about her so they avoid the subject.
So in this blog I am going to talk about Kaity. First and foremost I want to say that she is easily the best thing that has ever come in to my life. There are days that I am amazed that I have been given the gift of this child. She is everything to me.

Now, that being said, here is part of the story of Kaity. I have told bits and pieces to people and some people have been around for part of it, but nobody has been there for all of it except for me.

Some parts are not worth talking about even now. Suffice it to say that for many years when Jack and I were married I tried desperately to get and stay pregnant. I loved his girls as if they were my own, but wanted my own child. And for all of those years we were unsuccessful.

But in 1992 I discovered that I was pregnant. I was thrilled. But just weeks into the pregnancy I began to miscarry and the doctor put me on bed rest for the remainder of the pregnancy. It was not an easy task staying quiet all of those months, but with the help of my amazing friends I made it thru the pregnancy.

On the day I was told by the doctor that I could get out of bed and get back to my life (it was the Tuesday after Memorial Day and I was far enough along in the pregnancy for it to be considered safe) I came home and tacked up my big eventing mare Zoom. Then a group of us went out on a ride around the back roads of our neighborhood. Zoom was an amazingly quiet mare and I felt really safe. And it felt so good to be on the back of a horse again after all of those months. We returned to the barn after a couple of hours and by late that afternoon my water had broken and I was up at the hospital.

Kaity was born late Wednesday afternoon (yeah....do the math....24 brutal hours later)...and form the beginning it appeared that something might be wrong. She did not cry, open her eyes or try to eat the way the other babies did. The nurses tried to assure me that she was fine, just a little behind the curve due to the bad delivery situation. But hours went by and Kaity did not get better. Thursday they released me from the hospital but said that they would keep her there until she began to do a bit better. This was a rather small community hospital in the California Sierras. I spent the night with her Thursday and about 3 AM the nurse came in to ask why I had not tried to get any sleep yet. I answered that I was watching Kaity, because I felt that she was dying and I wanted to make sure I could call for help when it was time. The nurse told me that I needed sleep and promised to keep her up at the nurse's station of I would close my eyes for awhile.

The next thing I remember was waking up a few hours later and finding the nurses on the phones at the station trying to reach a different doctor to take a look at Kaity. They agreed that something was very wrong. My friends Jo and Larry came to sit with me and after she was examined I remember the doctor putting his stethoscope away and sitting down next to me and taking my hand in his. I can tell you for a fact- it is NEVER good when the doctor wants to hold your hand. Get up and run out of the room and do not look back.

He told me that Kaity had an obvious serious heart defect and she needed to go to the University hospital immediately. They tried to arrange for LifeFlight but there had been an accident and the helicopter was tied up. So LifeFlight sent an ambulance van to come and get her.

In the meantime I wanted to talk to my mom. I knew she worked for Sprint as an Adminstrative Assistant but did not know how to reach her up in Oregon. I called Sprint at the general number and told the person who answered what was happening. This kind woman promised me that she would find out where my mom worked and would make sure that she got the message. Within the hour my mom called and I told her what was going on. She asked me to keep them informed and I said that I would.

The next person that I saw was a woman from an organization called WeeCare. One of the functions of this group was to council the parents of critically ill children when they were headed down to the University. She wanted to prepare me for what I was going to see. She said that I could be as involved as I wanted, or could let doctors and nurses do everything. She said that there would be times it would be hard to watch and that if I got upset I would be asked to leave the room and would no longer be allowed to be with Kaity during procedures.

By now the van had arrived to transport us the hour and a half down to the hospital. I remember so clearly that Friday afternoon that it was raining. As we drove down we passed the very farm where I lived and I could see the horses in the pasture. I remember seeing my black and white paint mare grazing. She was a gentle mare and the kids loved riding her. I wondered if Kaity would ever get to ride a horse.

When we arrived at the hospital it was a pandemonium. We had to go through the emergency room entrance and it was packed with people. The EMT's were pushing Kaity in a isolette and it seemed as we pushed through people that everyone was getting quiet. I guess the sight of a critical baby puts a lot of things into perspective.

Now this is a weird thing to remember.....but it is something that has always stayed with me...... as we rounded the corner out of the ER there was a police officer standing with a guy in handcuffs that had blood all over his face. I was right behind the isolette and as I passed the man he reached out and grabbed my arm. Before the officer could stop him he looked me in the eye and said 'Good Luck'. I have no idea what that man had done to find himself bloodied and in handcuffs in an ER on the summer Friday but I will never forget what he did for me.

By that evening, friends had brought up clothes for me and I had been given a room at the Kiwannis House (a version of a Ronald McDonald house). Test after test was being run and we still did not have any answers. By now, several of my friends were at the hospital with me. I do not know what I would have done without these people in my life.

Finally a doctor was ready to give me information. We sat in a hallway outside of the critical care unit. I was with a few friends and after the doctor told me that Kaity had an extremely large VSD (hole in the upper chamber of her heart) and multiple ASDs (holes in the lower chamber) plus PDA (a valve that had not closed like it should at birth) he asked me if I had any questions. I remember my friend Jo saying to the doctor that while were being given information, nobody had told me that 'this baby is going to be alright, this baby is going to live'. That was when the doctor said that he could not tell me that because it was not likely that she would.

You know....I have heard about woman in the 'old days' getting the 'vapors' and fainting.....but nothing like that has ever happened to me. But as I heard the doctor's words I heard a roaring in my ears, a great flash of heat come over me, a tinny taste in my mouth and everything was just a bright white light. I remember thinking very clearly that I could not faint no matter what or else they would think that I could not handle information and I would not be able to stay with her during tests. And slowly the air got cool, the roaring stopped and I was able to see and hear the doctor again. My friends said that they saw me turn pure white but it passed so quickly that that it looked like I was okay. To this day I know how closely I came to fainting dead away when I heard that doctor's words.

Then they took me into a room with a white board and drew out everything that was going on and talked to me about protocol for open heart surgery. Kaity needed to be much stronger before she could have surgery but they wanted to tell me about it ahead of time. They said she would be staying in the hospital for several weeks or months and then we would do the first of two or three surgeries.

At this point the doctor asked me if I had any questions. I said that the only question I had was that I wanted to know how this happened. I had been so good during my entire pregnancy. Ate extremely healthy, not even a glass of wine, I had never been a smoker or a drug user. I never even took an aspirin or colored my hair during my pregnancy. I was much thinner and more active back then and I had gained exactly the amount of weight that the doctor asked me to. He said that they had no way to tell how something like his happened. That most babies with this number of problems would not carry to term and it was only because of how careful I had been that she had been born at all. Then he said that while he could give me all kinds of medical answers to my question that he had an answer that I could accept or not.

He said that she was this way just because this was the way that she was. And that God had given her to me because he knew that I would take care of her.

That was enough of an answer for me. I have never questioned it since.

Over the course of my blog I will talk about Kaity more. And give little insights into her life as well as mine.

But here are the facts. Kaity was born with congenital heart disease which caused several abnormalities in her heart. Two open heart surgeries have fixed most of them. She still has mitral valve prolapse but hopefully she will not have to have any other surgery to correct that.
She was also born without a functioning thyroid gland. This in conjunction with her heart problems and the medication needed for each of these may be the cause of her mental disability. Kaity is mentally retarded with an IQ 0f 39 the last time she was tested (lower than 79 is considered legally mentally challenged). It is a horrible thing the first time you hear a doctor or teacher refer to your child as mentally retarded and it never gets any easier. To me the nastiest word in the English language is 'retarded or retard' when it is used to describe a person.

Some people have asked me if I ever want to talk about it. How does a parent feel when people ask about their mentally disabled child? Does it hurt or help? Well here are the unfortunate facts. Some days I want to talk about it.....some days I do not..... It all seems to stem from where I am in my life on that given day. If life seems good and things are fine then I do not mind talking about it at all. But if I have had a tough night at work and spent the morning on the phone with someone that needs to ask me questions to see if Kaity is still eligible for special ed- lovely questions like 'has your child gotten better since last year'..... and 'what are the expectations for her recovery'? Well.....on those days I do not want to think about it. And there is no way to know where I am at on a given day unless you ask. And you can always ask. It lets me know that you care.

They say it takes a village to raise a child. And I have counted on that village many times these past 17 years. I do not know what I would have done without my best friends Lisa who has been a wonderful 'Aunt' to Kaity. Her family has been like our family, and while my biological family may have passed away my friends have always been there to let me know that I am not alone.

So.....not a fun blog day....not a introspective blog day....but an important blog day.

And now I will take my nap before I go back to work.

Thanks for listening my friends.

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