This is my blog about many of the funny, sad, and outlandish events that take place in the life of my family. Having a child that wears a protective helmet at all times gives us a little bit of a different view of the people and the world around us. I hope you enjoy reading it as much as I enjoy writing it.
Last weekend my family and I decided to make a trek to a local furniture store. As we walked around our second store I noticed that one of the employees, who turned out to be the owner, was occasionally intently watching us. As we frequently do, Kelly and I took turns walking with Elise through various sections. When we were finished they began to walk toward the door and said they would meet Abby and I outside. The owner of the store was talking with me and trying to provide a little gentle pressure to buy something before we left. Seeing that I had no intention of buying anything he politely asked, in the best way he could muster, what exactly was "wrong" with Elise.
This was not a new experience for me, and generally, I am no longer bothered when somebody asks. I am aware, it is pretty obvious when you look at her, that she experiences life in an "unusual" way. In my well rehearsed 30 second elevator speech I gave him Elise's abbreviated life story. To which he responded in the usual way about how that is "unfortunate", "sad", and that he was "sorry to hear that". Following that he asked me something that I have never had somebody ask me. Others in my extended family have experienced this question, but nobody that lives in my house.
As innocently as possible he asked, "Are there suitable homes for her to live in?" Don't get this message wrong. I was not, and am not, offended by that question. I know that is an acceptable answer for some, and I will not judge them for that. But, in our house that is not an option. She already lives in a suitable home with her mom, dad, and sister. It is not always easy, many days we might even say it is never easy, but she is in a suitable home where she is able to thrive to the best of her ability. In our country we have vast opportunities for assistance, particularly while living in a metropolitan area like Kansas City. There are opportunities for home care assistance, respite care, medical assistance, you name it. We do not need or take advantage of all that is available, but it is available for the families with more severe needs than ours.
While there are many nights we would LOVE to be able to sleep more, I cannot imagine knowing that she was living somewhere else, waking them up at 4am and laughing like crazy like she does to us. If we are going to be up, we might as well have someone to laugh with! Ironically, later that night, Kelly and I watched a video, produced by the K-State College of Education, where they visited Tanzania and participated in educating teachers and home supervisors of orphanages, schools, and group homes for children with special needs. Many of those kids lived full time in some type of facility. I certainly don't judge them either. How would one know if the child living in a home was one of several in the family with disabilities, or if there was a single parent at home taking care of multiple kids and not able to handle the care of their child with a disability. You just never know the road that someone else is truly traveling and the reasons behind the decisions they make. If you look at Elise's face in the snowy picture I think you would agree that she looks pretty happy. We never know what the future holds, but for now, she is in a perfectly suitable home and we intend to keep it that way.
Last week, another parent of a child with special needs sent me a video clip of a new song by a women named Jennifer Shaw. She is a singer, songwriter, worship leader, and mother of a child with special needs. One of her newest songs is titled "Your Child". I thought this song hit the nail on the head about as close as any I have heard. I hope you will enjoy it too. If you are interested in listening to it, click on the video to the right.
The night Elise was born, I'm sure as it is for all new parents, was truly an amazing experience. After everyone was gone from the hospital, and Kelly was resting comfortably, I sat in the rocker with Elise in the hospital nursery. I didn't know much about babies. They had to talk me through how to hold her, to support her head, not too rock to fast, etc. We rocked in the chair for what felt like hours. I'm sure it was only about 30 minutes. At one point, Elise started to cry. Like all newborns it wasn't a faint little whimper, but an all out airing of the lungs! For some reason, I wasn't stressed out about it. Hearing other people's kids cry before this was a definite source of frustration, but my own child crying, not so much. After trying to calm her on my own for several minutes, the nurse came in and asked me if I would like her to take over for me to help calm Elise down. I politely declined. After a few minutes of coaching, without achieving any success, she ask politely again if I would like for her to try. I remember telling her, "No thank you. I'm never going to get this night back. I plan to enjoy it for all it is worth whether I can get her to calm down or not." She left us be and I continued to rock with Elise as I tried to figure out how to soothe her. A little while later the nurse came back in and asked if I had changed her. Um.......no I hadn't done that. And, no, I wouldn't have any idea where to begin if I did have to change her. At that moment I realized how far in over my head I truly was. It was then I began to learn that parenting truly is learning on the fly. It would be a lot like my career in teaching. I had a long range plan and new what I wanted to do. In all reality, I was just trying to stay one day ahead of my students. Now, I was just trying to stay one day ahead of my own child.
As I lay next to Elise at nap time I realized that I am really not in a much more knowledgeable place today! While she no longer cries, she shows her emotions in other ways. When she is uncomfortable or unhappy she moves around constantly and sometimes pretty forcefully. Just like when she was a baby, she is not able to communicate what is bothering her or what she needs. It is a matter of figuring it out. Honestly, I'm just not very good at that. I don't know what she wants, and often I just can't figure it out. But, that doesn't stop me from trying. It can be very discouraging when she struggles, but it sure is rewarding when she stops struggling. Eventually today I wrapped my arms tightly around her and just held on until she went to sleep. As I lay there trying to determine if this was what she wanted or not, I realized it didn't seem to matter. She was calm, happy, and sleeping. I thought about getting up and just letting her sleep. But then I thought back to that very first night and recalled, I will never get this time back. Whatever else I could be doing will just have to wait. The nap was pretty short lived, but the time I got to enjoy with her was certainly a highlight of my day.
We learned last night that Elise now has Influenza B. That is less than 6 weeks after learning she had Influenza A! It would be a huge understatement to say she has had a pretty rough couple of months. Unfortunately, that is how it goes in Elise's life. She will go months with relatively few issues and then the bottom will fall out. Even though she is struggling the past couple of months, we are well aware this is a long way from the bottom truly falling out. We have been there as well. We aren't even in sight of the bottom at this point, and we would like to keep it that way.
When Elise was finally finished with chemo treatments and we were able to go home, we had no idea the health struggles that would still emerge in her life. As cancer developed in the very early stages it was very easy to see that something wasn't right and she was spirally down hill fast. Post treatment Elise, just isn't that easy to figure out. She has lost the ability to verbally communicate with us. She can't say this hurts, or this is wrong, or I don't like this, or anything else that might help us to help her. She has also lost the ability to cry. Most days, we are very thankful for that. Some days, we just wish she would cry when something bothers her so that it would be easier to understand.
When I was sitting with her at the doctor last night I struggled for the right way to explain, "She is sick. I just know it." Frequently they ask things like, has she been vomiting? Running a fever? Pulling at her ears? Going to the bathroom regularly? Etc., Etc. Etc. How do you explain to them that she throws up every day, sometimes multiple times per day? She generally doesn't run a fever, but she does have bouts of extremely low temperatures. She is always digging at her ears, nose, groin, rear, etc. How am I a supposed to know if she did that 300 times today instead of the usual 275? During treatment, she lost the ability to use the bathroom on her own and subsequently wears a diaper. This will likely be a way of life for her and for us the rest of her life. She does have some "usual" bathroom behavior, but a rapid change in wind direction could throw that off for a few days as well.
So, I gave them the only information I could think of that always tells us that something is not right. She isn't having seizures. That's it. She doesn't have all the other textbook symptoms that the doctor is looking for. She isn't having seizures, so something must be wrong. How do you explain, her brain is working better the past couple of days, so something must be wrong? The look on the doctors face when I say that, is always one of the highlights of the visit. It's the little things when you have a child with special needs. It makes me smile at least.
More importantly, we always ask ourselves, why does something else have to be wrong to finally give her a break from the seizures? Dozens of high powered drugs have been unable to stop them. A special diet did nothing for them either. But some random illness seems to stop them almost instantly. On Thursday, Elise had her usual 150+ seizures. On Friday and Saturday, she didn't even have 50 total both days together. For many that would be cause to celebrate! For me, my inner skeptic begins to act up and I know something must not be right. We wish we could enjoy a few days without seizures, but the reality is those days are usually accompanied with other challenges.
The picture above is Elise sleeping on the couch this afternoon. She didn't get out of bed until 3pm today. I am jealous! She was awake less than 30 minutes before she got up on the couch and was out again. A lot of sleeping today. Tonight we know she will be just fine. We will enjoy the lack of seizures while they are here, and will take the other sickness that has come to take their place. It is a matter of time until the sickness is gone, and life will be back to "normal". Hopefully that will come sooner than later.
We have never been big into celebrating Valentine's Day. Our wedding anniversary is a couple of weeks after Christmas, and Valentine's Day is just a little over a month later. It was just never that important to us to have one more day that we needed to buy a gift for. It was a mutual agreement many years ago. For the most part, we haven't strayed from that agreement in the 18+ years we have been together.
This year isn't going to be any different. Every kiss isn't going "Begin with Kay" in my house. No shiny packages, and no flowers that are three times their normal price either. I'm sure she won't be disappointed. Just because there will be no exchange of gifts doesn't mean we love each other any less. I would say quite the contrary.
Anybody that really knows my wife knows she is an extraordinary person. Before Abby was born she was a fantastic elementary music teacher, a caring mother to Elise, and a great wife to me. Shortly after Abby was born she decided to leave her career behind and stay home to raise our girls. It appeared to be one of the easiest decisions of her life. She gave up all she had and was professionally, for the opportunity to gain more personally. Unfortunately only a little more than 3 months after the next school year started, Elise was diagnosed with leukemia. Suddenly, she had a whole new role.
While Elise was in the hospital, Kelly stayed with her almost every night over the 8 months of treatment. Elise was only home a total of 30 days in 8 months. I stayed with Elise as I could when I was able to be in Kansas City overnight, but Kelly certainly put in the brunt of the work. She became a huge advocate for Elise's care and continues to still be the voice for what Elise needs and wants today. It is no small task. She has managed to raise our girls, mostly alone, over the past 14 months as we have lived in 2 different cities and I am only home on weekends. She doesn't complain, she doesn't feel sorry for herself (other than the occasional ice cream pity party), and she doesn't want anyone feeling sorry for her either. She is strong. Stronger than I ever thought.
My girls at the Oklahoma City Bombing Memorial
Over the past couple of years, she has become a student of everything involving the brain, cancer, seizures, and special needs involving children. She has devoted herself to reading and studying the bible and raising our girls following the biblical principals that we both believe are extremely important. People usually ask me, "How does she find time to get everything done?" Generally I respond in two ways. 1) Fortunately, she doesn't require much sleep. 2) I don't know how she does it. She just does.
Maybe she is able to accomplish everything because our house is not pristine like Cinderella's castle. Maybe it is because she isn't able to work on the perfect tan all summer long. I really think it is because she has devoted herself to everything that she "has" to do, and has put the majority of the things that she "wants" to do on the back burner. The house will get cleaned another day and we will both be just as white at the end of next summer as we are today. But, that just doesn't matter to either of us.
I like that she is really such a simple person. She loves to dress up and be "out on the town", but those opportunities don't arise too often. She is okay with running errands in sweats, hair a little out of place, some random sticky goo on her clothes from a kids hand or other body part, and it really doesn't matter if other people are staring. Chances are they are just intrigued by the helmet and have missed the out of place hair and the sticky goo anyways.
This Valentine's Day, there won't be any special gifts, but there will be lots of thank you's for all you do and I love you's. For now the blog will have to do. I can deliver the rest in person when I get home on Friday. I love you Kelly, and Happy Valentine's Day to you all.
Logo for the Feeding Tube Awareness Week borrowed from the Feeding Tube Awareness Foundation - http://www.feedingtubeawareness.org/
Shortly after Elise began chemotherapy treatment back in 2009 she stopped eating. We understood she had cancer, but she stopped eating. Shouldn't they be doing something about that?!?!?!? After a few days of not much action in the food department they basically said, "Seeing her eat will make you feel better, but it isn't going to do anything for her right now." I don't think it clicked quite that quickly for me, but I began to realize that eating, as we generally did it in my family, was done because it was meal time or because it was available. It didn't really have much to do with "needing" it.
Off and on in the early part of treatment Elise continued to eat some things by mouth until eventually she just stopped eating all together. We, and the doctors, assumed she would likely begin to eat again after chemo was finished and life got back to "normal". During really tough medical items Elise got her nutrition by IV and later by an NG tube that was inserted through her nose. It wasn't fun watching her go through every day with that tube hanging out of her nose. It was even less fun putting it back in when she yanked it out or it got caught on something! About 2 months after treatment ended, Elise was not willing to keep the NG tube in anymore and she wasn't eating enough to sustain the life of a baby bird. The decision was made to take her in to have "G Tube" placed that would become a way to sustain life for her until she was able to do it more on her own.
That was more than 2 years ago now, and there really is no end in sight. It appears this will be a way of life for us. We have grown accustomed to it and those needs don't often get in the way of whatever we are doing. Elise has the ability to eat, she just doesn't appear to have the desire. She has been run through the gambit of tests. All of the mechanics of eating work fine, but the seizures seem to get in the way and keep her from being able to eat. She has gone through periods when she has shown great eating promise, but they have generally been short lived.
We have mostly grown past the part of being bothered that you can see a huge bump on the top of her belly where the tube comes out. We are used to telling wait staff at restaurants that she won't need anything to eat or drink and watching the strange faces they make as well. As I have mentioned before, Elise is a daily puker. One of the positives of her mainly consuming milkshake like nutrition is that the puke is easier to clean up. No chunks of pizza, spaghetti, carrots, corn, you name it. Just milkshake.............. Everywhere!
There have not been a huge number, but it has been interesting the people that have come up to us in various places and talked with us about their child having a feeding tube many years ago, or even now. The reasons range from disease, to physical development issues, to you name it. Who knew there were so many people out there that depend on a feeding tube to sustain their daily lives. Prior to our experience, I thought this only happened in hospitals.
At one point I thought, "I need to lose weight, maybe I will go on the Elise diet." But, one taste of that stuff and I went back to my lunch. I will leave that kind of nutrition to those that have it pumped straight to their stomach and forgo the taste. I'll work on my diet another way.
Shortly after we learned that Kelly was pregnant, she received the book "What to Expect When You're Expecting". It was a great book that outlined almost everything she could expect in a "normal" pregnancy, and helped to ward off many of the jitters of being first time parents. About a year and a half after Elise was born we took a class and read several books about parenting with "Love and Logic". It was also a great find for us and gave us some valuable tools to use in providing discipline and structure with Elise, and later Abby, at home.
In late 2009, Elise was diagnosed with leukemia. There are several books about that, but nothing for kids like Elise where her cancer wasn't actually in her blood, but rather her spinal fluid. That was the first time we heard, "This is really rare" and "unusual". That has become the theme of our life. Maybe I will get that put on some personalized tags for the cars this year. Elise getting a brain infection during cancer was "really rare" for someone that did not go through a bone marrow transplant. There were no books about that either. We are educated people. Kelly LOVES to read much more than I do. She has done some really serious research at times and has done some significant reading on some of the various aspects of Elise's life. There are lots of what to expect when your child is (insert name here) books, but not much for kids with Elise's various ailments.
Kelly took the picture above tonight. Elise is sleeping on the floor, with her head in the dog toy basket, after having a seizure and falling over. Unfortunately, this really isn't an uncommon sight in our house. Elise has had a seizure, hit the ground, and fallen asleep in some of the oddest places and positions. While we never laugh when she has a seizure, the places and positions she has ended up in can sometimes be funny. We always check on her after she has a seizure. Sometimes she is ready to bounce right back up and resume her normal busy ways, and sometimes she just needs to be left alone a little bit to rest. Even if it is in the dog toys, or on the dogs pillow, or wedged between the couch and the bookcase. One never knows where you might find her.
As Elise exhibits different behaviors we often think, "we can't be the only people experiencing this!" If there are others, or even so called experts, I wish they would put out a book to help us understand. Over the past couple of years we have gradually come to terms with the fact that there may be no "fixing" some of the things that so greatly impact Elise's development and daily life. But, that hasn't slowed our pursuit to try and understand why she does the things that she does. "What to Expect When Your Child Has a Seizure" doesn't appear to be out there. If it were, it would probably be in a 40 volume set and only 3 pages in 3 of the volumes would pertain to us, or any other family that are dealing with seizures. I guess that is why they might say there aren't really any "textbook cases."
Like most people, when I was growing up I believed I would some day reach the magic age where I would know everything I needed to know. As it turns out, I keep growing older and learning there are more things that I need to learn this year than last! I'm sure I am wiser than I was several years ago, but I sure don't feel like I know any more. As we have taken Elise to see some of the best and brightest doctors in their field, I have also come to realize that education isn't everything either. When some of the most accomplished people say, "I don't know. I haven't seen that before." at least I don't feel quite as incompetent. They aren't writing the books to help us understand either.
I guess it will fall to us to write the book for others. That is one of my 2013 goals. Other than telling some funny stories, some sad stories, some really disgusting stories, and lots of pages of "we don't know why this happens", I'm sure it will be very enlightening. I would love to hear what other people think this book should be about. Feel free to weigh in with your opinion. Be careful though. I might quote you!
Happy World Cancer Day!?!?!?!?! Is that even an appropriate thing to say? February 4th, 2013 has been dubbed "World Cancer Day". The purpose of this day is primarily to draw attention to the tremendous amount of people affected by cancer around the world.
Being diagnosed with cancer, or having a child diagnosed in our case, can feel like a very lonely place. In your own little world it becomes all consuming. Every year over 12 million people are diagnosed with cancer and 7.6 million die of the disease. That is alarming! As I look at those numbers, there is nothing "lonely" about that at all. But, I wouldn't say it is comforting either.
So many people are affected by this disease all around the world. If you have not been directly affected, it is easy to jump to the conclusion that it won't affect you. You are too well off or too poor. You are too well educated or lack education. You come from a certain culture, background, community, race, the list goes on and on. The facts are, cancer doesn't care about any of that.
For us, we were a good Christian couple with a healthy 3 year old and 1 year old. We were both well educated, doing well for ourselves, and doing things "right". It didn't matter. On the cancer floor we met people who lived similar lives to ours. For them, it didn't matter either. We met people that were polar opposites of us as well. It didn't matter for them either. During treatment I had a drink with a long time friend and he told me "I have done a lot of crazy stuff in my life and I ask myself 'Why didn't this happen to me?'" Luckily for him it didn't! But, if cancer comes calling, whatever he has done earlier in his life isn't going to impact whether cancer comes comes or not.
It is natural for us to try and make sense of the things that happen in our lives. Trying to do this has been a goal of mine for the past several years. I have learned to accept more over that time, but I haven't gained an inch in making sense of it. The disease has permeated all of society and not just here in the US, not just your city, your age group, your social circle, or your family. It is truly amazing how many people are affected.
One of the more frustrating things we experienced during Elise's treatment was simply how little was known about the disease. Cancer isn't new! Billions of dollars are spent every year on research, yet still more than half of all people diagnosed with the disease will ultimately die from it. That is alarming! One of my greatest prayers for our society is that we can find a cure for this horrible disease. For those that are still fighting the fight, I hope that answers to those prayers come as quickly as possible. For now, I continue to pray for them and know that one day a world will exist where cancer is not a part of it. I just hope that happens in my lifetime. Next week or so would be even better!
Elise and I fishing on Milford Lake in the summer of 2009.
Prior to moving to the Kansas City area we lived on the shore of the largest lake in Kansas. It was not one of the great lakes, but it was a little slice of heaven in our daily lives. Minus all the bugs in the summer time.
Elise loved to be in the boat with me and she loved to go fishing. I'm not sure if she loved the fishing as much as she just loved to be out with me in the boat, and loved that we always stopped to get "beef turkey" (that was as close as she could say beef jerky). She also loved to go out fishing with Uncle Don and I as well. We spent many nights each week doing exactly what you see in the picture. It was about as good as life could get for a guy that loved to fish and loved his little girl.
On one Sunday evening Elise and I were driving across the lake and she started to sing. "I am a friend of God. I am a friend of God. I am a friend of God he calls me friend." Knowing that we sang that song in adult church, I asked her where she heard that song. It happened to be one of my favorites. She told me that they were singing it in Children's Church. She was interested in learning more of that song and I taught her as we flew across the water at full speed singing at the top of our lungs. It was a truly great night!
Flash forward several months and Elise was in the PICU at Children's Mercy Hospital battling leukemia and an infection on her brain. It would be safe to say she wasn't doing very well. She was really struggling, and honestly, so were we. I had tried several times over the months before to sing this song again with Elise, but it was just too hard. I couldn't do it. I downloaded the song off of the Internet and played it for her in her room. She was heavily sedated, on a ventilator, and fighting for all it was worth. But low and behold, that song made her numbers improve! She breathed easier, appeared to rest more comfortably, and responded to me being next to her while I played the song. During the months after that I would continue to sing that song to her as often as I could. She loved it, and it was still one of my favorite songs. During treatment, maybe it became even more of a battle cry in my mind. She certainly said some profound things at the beginning of treatment, and I knew this song was a simple way for her to communicate.
We are getting close to 4 years since Elise and I first sat in the boat together and sang that song. The image and the feeling is still ingrained and as fresh in my mind as if we just did it yesterday. Only now, am I even beginning to be able to hear that song in public and not cry. Following treatment it was just too hard. The song brought back too many emotions and too many memories that I just didn't want to dig in to. The ups and downs of cancer treatment, the many struggles that Elise had and continues to have, and the sweet look on her innocent face were just too hard to go back to.
I have seen the picture above many times. For the past couple of years I have tried to block it out of my mind and not even think about it. Those were different times with a much different child. Times and circumstances are much different now. I am making progress that it doesn't hurt as much to look at the picture as it does remind me of such a simple time in her, and my, life. As we sang that song in church today, the flood of images and emotions came back just like it always does. I can still feel her sitting on my lap, holding on to the steering wheel, and singing that song at the top of her lungs. I am thankful that the images are clear just as if this happened yesterday.
If you aren't familiar with the song, here are the lyrics.
I am a friend of God by Israel Houghton
Chorus 1
I am a friend of God
I am a friend of God
I am a friend of God
He calls me friend
Verse 1
Who am I that You are mindful of me
That You hear me
When I call
Is it true that You are thinking of me
How You love me
It's amazing
Bridge
God Almighty
Lord of glory
You have called me friend
Chorus 2
I am a friend of God
I am a friend of God
I am a friend of God
You call me friend
