My heart breaks for Connor's family and the world for losing such an awesome kid. My hero, Connor from South Africa:
You can google Connor Gerber Caringbridge to read more on his story if you would like.
Connor Gerber
June 27, 2001 to April 19, 2013
April 25, 2013
April 24, 2013
Every couple of days I have a break down about how our family is going to make things work without me working. I am working for the foundation of course, but it could be a while before that is a paying job. Obviously the hope is that the foundation will be able to get grants and such from companies like Walmart or Target or local trusts that would cover any overhead including a salary for me (set forth by our Board of Directors of course). The point though is that for now, it's going to be tough. I keep trying to remain strong in my belief that God will provide knowing that we are trying to devote our lives to something bigger then well, ourselves. But this weekend I was having a hard go of it. Talking about selling our house and this, that and the other. Pressure. Lots of financial pressure. Anyway, I came into the store on Tuesday and I could not have planned a better day to help pick me up out of my funk. We had donations from some Quail Creek residents-post their neighborhood yard sale- and then God sent me an angel that really really boosted my spirits. Her name is Lucy Buffett and she sent THREE truck loads of things to the store. For me this was kind of my "hang in there, this will all come together and work out" sign. I know I am doing the right thing with my life, but it's scary getting started. Any little bit extra George and I had, we invested in the foundation and what it stands for because we believe in it with all of our hearts. But its scary. Leaping is scary and over the past few days two things happened to really reassure me and keep my faith hanging on. Lucy Buffett bringing us three truck loads when doubt was trying to set in and most importantly was the passing of Connor to cement in my head why all if this fear is worth it. Connor was almost 12 and had been a neuroblastoma warrior for almost eight years. More than half of his life was spent fighting this horrible horrible disease. The last few months have been horrible on his family and especially on him. His poor body was riddled with cancer and suffered the pain of the disease daily. Every day was a little worse. The tumors started causing seizures and eventually, he spent most of his days in a medicated and pain induced sleep. He and his family should not have had to endure that. That is what the foundation is fighting for. To help kids like Connor, to spare them any moment of pain we can, to spare their families...to be a part of saving these childrens' lives. I feel honored be a part of this world because as painful as it is, these children can show you a beauty you never new existed. I know hearing about what these kids go through is tough, but sheltering the world from those facts is an injustice to these kids. The world needs to know their stories, their pain, their truths. Maybe then the world will work harder to try and save them.
My heart breaks for Connor's family and the world for losing such an awesome kid. My hero, Connor from South Africa:
You can google Connor Gerber Caringbridge to read more on his story if you would like.
My heart breaks for Connor's family and the world for losing such an awesome kid. My hero, Connor from South Africa:
You can google Connor Gerber Caringbridge to read more on his story if you would like.
April 22, 2013
April 22, 2013
Clayton is crazy! Sweet, but sometimes absolutely nuts! He has taken to screaming these days and he gets these screaming fits that drive me up the wall. The kind of fits that go from me quietly and calmly trying to get him to hush or understand everything is fine to me sternly trying to get him to hush. And after a whole day of these regular screaming fits I can admit that I have at times been so frustrated, that I use the word shut up. As shameful as it is to say, sometimes it is just so frustrating it comes out. I try to help him and I plead with him, but he doesn't understand those things or chooses not to listen...I'm not sure which. For example, today I was trying to have him come outside with me, thinking he could play in the yard while I cleaned my car. Well, he got it in his head we were suppose to be leaving. So when we didn't get in the car and leave, he started screaming bloody murder in the driveway. I mean his screams are the kind that make people come over to see if he's hurt. I think it went on for ten minutes. Nothing I said mattered. That's the hardest part and has been for a while. There are a lot of situations that it doesn't matter what I do or say, he just has a fit. God love him, but sometimes he is just goes crazy and sometimes I end up feeling like there aren't enough patients in the world to get me through the day. Special needs kids can be as tough as they are beautiful. A friend of mine has to wrestle her daughter just to put her daughter's hair in a pony tail. These completely "un-normal" moments have become the normal for those of us with special needs kids because we love our kids and that is what we do for them. Of course I know screaming is normal for children, but I can assure you, Clayton's behavior is not normal for his age. Anyway, I came across this article which I love and felt like this woman read my mind and I thought I'd share it. I have never talked much about Clayton's developmental delays and all the ways in which that affects mine and George's lives, but I thought this woman hit the nail on the head...at least for me.
"About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should be's" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed."
"About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should be's" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed."
April 15, 2013
April 18, 2013
Clayton is doing really good right now. He and I were sick last week, but aside from that, he is doing great! He has been doing his schools a half a day. I am hoping that he will really pick up some things from the kids at his regular school. I say regular school because he spends three mornings a week at a school for children with delays and the other two mornings at a regular school. I love that he gets to have both. School and childcare have been a problem for us because as he gets older, his delays become more obvious and aren't always shall we say "welcomed" at some childcare facilities. I even had one place tell me their insurance did not allow them to keep a child with mental or physical disabilities. That came as a shock to me. It was the first time I had really heard someone label Clayton in that way. So I am glad he is able to go to the schools he does in the mornings when he is not in treatment...or sick. George and I have felt like we may end up having to home school Clayton though for multiple reasons...which of course also factored into my recent career decision. So much for grad school. As a mom my dreams and goals have had to change. My life has to work around Clayton's and even though it can be hard and even hurtful, I wouldn't change it. It's all leading me somewhere...hopefully not off a cliff!
We have also tested him for treatment three times over the past month and a half and he continues to be HAMA positive, which means no treatment. His HAMA did appear to go down a little though, which could be a sign of treatment being closer. We test him again on the 25th. Otherwise, we are set to go to NYC for scans on the 30th. The scary thing is that those would be our last scans before starting Clayton's traction June 11th, which would mean he would be due for scans again the week of August 1...during which time we might still be in traction and unable to do scans until after August 27th. As far as the world of cancer goes, being NED still at this point and not being able to do scans on time is one of the scariest things EVER. Seriously, when I say that this cancer is aggressive, that is probably an understatement. Our little buddy Abigail was in remission for a year before relapsing at Christmas. They started a chemotherapy regimen, but in February found that the tumor had not only not shrunk, but it had increased a little in size. Thankfully their most recent scans this month showed no more increase in size. Then there is Justin. My sweet Justin. Love this kid. He was the one on StandUp2Cancer. They had a room at the Ronald beside ours when we first went to NYC. Anyway, he relapsed for the sixth time recently. Yes, the sixth time in almost seven years. The problem at this point is that his body is so weak after seven years of treatment, that their options are limited. Unfortunately, the cancer is showing a lot of progression in a short amount of time. So, its obvious why we can't let our guard down and why we are going to be scared out of our minds while our priority is his back for a few months. It's so screwed up because if he does relapse he will be better off if we have his back taken care of. I dread explaining to technicians what type of rod he has in his back though when the day comes. It's never fun explaining ALL of his things. And you can bet I always have to repeat stuff over and over....and over. Thankfully MSKCC is pretty good with their electronic records and that helps.
Please pray for Justin and Abigail.
We have also tested him for treatment three times over the past month and a half and he continues to be HAMA positive, which means no treatment. His HAMA did appear to go down a little though, which could be a sign of treatment being closer. We test him again on the 25th. Otherwise, we are set to go to NYC for scans on the 30th. The scary thing is that those would be our last scans before starting Clayton's traction June 11th, which would mean he would be due for scans again the week of August 1...during which time we might still be in traction and unable to do scans until after August 27th. As far as the world of cancer goes, being NED still at this point and not being able to do scans on time is one of the scariest things EVER. Seriously, when I say that this cancer is aggressive, that is probably an understatement. Our little buddy Abigail was in remission for a year before relapsing at Christmas. They started a chemotherapy regimen, but in February found that the tumor had not only not shrunk, but it had increased a little in size. Thankfully their most recent scans this month showed no more increase in size. Then there is Justin. My sweet Justin. Love this kid. He was the one on StandUp2Cancer. They had a room at the Ronald beside ours when we first went to NYC. Anyway, he relapsed for the sixth time recently. Yes, the sixth time in almost seven years. The problem at this point is that his body is so weak after seven years of treatment, that their options are limited. Unfortunately, the cancer is showing a lot of progression in a short amount of time. So, its obvious why we can't let our guard down and why we are going to be scared out of our minds while our priority is his back for a few months. It's so screwed up because if he does relapse he will be better off if we have his back taken care of. I dread explaining to technicians what type of rod he has in his back though when the day comes. It's never fun explaining ALL of his things. And you can bet I always have to repeat stuff over and over....and over. Thankfully MSKCC is pretty good with their electronic records and that helps.
Please pray for Justin and Abigail.
April 11, 2013
Long Time Coming...
Aside from being busy with the foundation, there is another reason that I have not posted much these past few months. I have a secret. One I have finally been kind of, sort of ready to talk about, but I never can seem to find the right words. Some people might be thinking "just say it", but I can't just say it. It has been a journey for George and I that began when I was pregnant and slapped us in the face while in the midst of cancer treatment. As parents, we knew something, but at the same time, nothing for sure. I have had a hard time posting anything else, because this is the thing that I wish more than anything to get off my chest, but it has been hard to find the right words to do it in a way that is respectful to everyone, especially our family. On my last trip to NYC, I even mentioned posting about it when I returned, so you can see how long it is taking me to get it right if for no one else, for myself. This has been a journey for our family, so you going to have to bear with me as I bring everything full circle...
When I was fourteen weeks pregnant, I had an ultrasound that revealed my child had a dangerously large bladder. My normal OB recommended I see a specialist ASAP. Of course their ASAP would have been two weeks later. Lucky me, I knew somebody who knew somebody and so a specialist in Mobile saw us that same afternoon...long drive. We got there, the Tommy Bahama-shirt wearing doctor did an ultrasound and calmly proceeded to tell us our options:
Our baby had an enlarged bladder likely caused by an obstruction at the base of his ureter. Otherwise known as UPJ (for short). We would need to do an amniocentesis to drain the bladder. After that, there was a 50/50 chance it could reoccur. If it reoccurred, we would likely need to go to Cincinnati to see some very elite specialists. We would have to wait and see. There was more. Having any kind of issues like this especially this early on, can be a marker for syndromes. What? We would need to spend the weekend thinking about whether we wanted to proceed with the amniocentesis and run genetic testing on the amniotic fluid or in light of the complication and high risk for a syndrome, we could decide to terminate the pregnancy. Whatever we decided, we were due back to see the doctor the following Monday. All of the news was overwhelming to say the least. On the drive home, I remember telling myself, "wait until your home alone to cry, just hold it in.". I remember George on the phone with a friend talking about cooking out and my thinking what the hell? How can he go to a cookout? We just found out that if we continue with this pregnancy then our child will likely have a syndrome and he wants to go to a cookout? Apparently he did. He went to his cookout and I went home and wallowed on everything. I remember crying and screaming on my Mom's porch the next day. I couldn't believe the whole situation. For those who don't know the back story, I'll give you the cliff notes: George and I were not married and like so so many others, we got pregnant on accident. It isn't something I talk about because well, it isn't anybody's business and there are a lot of judgmental people out there, but it is a part of this story. I think some people might have doubted we would ever last, but here we are on this side of hell, still together. So back to it... I was a distraught 21-year-old screaming and crying on my mother's porch because my accidental pregnancy had just turned into something so so much more. I had a choice, I could have terminated the pregnancy and gone back to being a semi care free 21 year old once again. I'm just not built that way. I was taught you take responsibility for your actions. And while I am very much a pro choice kind of woman, I don't believe in abortion without justifiable cause and for me, accidentally getting pregnant was not justifiable. So I made my choice to keep going. And for those wondering, I did involve George in the decision process. Thankfully, we were on the same page with everything.
George was quite sweet about it. I asked him in the car one day how he would be if our child did have down syndrome (this was the syndrome doctors mentioned most to us) and I'll never forget his response; he said, "I think I would be fine. I even think I would be partial to a child with a mental disability." George has a sweet aunt who has a mental disability and so he has grown up interacting with her and so the idea of loving and caring for someone with a disability wasn't uncommon to him. He grew up watching his father's love for his aunt and seeing how well his father and uncles cared for her. To him it seemed natural...it seemed normal. For me it scared the hell out of me. I was always the person who saw anybody with any kind of disability and wished I could do something, anything for them, but never knew how to interact with them very well. There was so much about the disabled I did not understand. I remember my mom told me it would be a blessing, she said that when other children can be cruel and mean (I know she meant me), she said children with disabilities like down syndrome will love you always.
The following Monday we went in, did an amniocentesis to drain the bladder and they drew amniotic fluid for genetic testing. More cliff notes: The rest of the pregnancy was filled with every other week appointments and toward the end even twice a week appointments. We were watching to see if the retention from the bladder caused any kidney damage. We did find kidney damage, though the doctor said it would be hard to know anything for sure until the baby was here. We also learned that the testing on the amniotic fluid showed no signs of a syndrome...
On November 5, 2008, Clayton was born. After a whopping 20 hours of labor, he was here. The umbilical cord had been wrapped around his neck, and I remember the fear waiting to hear him cry. Thank god he did. One of what seemed like 15 nurses in my room, gave me a super quick glance and whisked him off to the NICU (and when I say super quick I mean like a one second glance I didn't see coming). This picture was the first good look I got at Clayton:
The next few days were a blur of, "yes, he has kidney issues...you will need to go to UAB...we are going to need to do surgery...". Before surgery:
Only one of his kidneys was functioning and it was only functioning and about 1/3 of what it should have. They operated on him at 10 days old to try and repair the functioning kidney and give him the best chance possible. After surgery:
The surgery was a success, but the recovery was awful. The swelling was horrible!!! We spent his first 65 days in the NICU before we were allowed to go home. During this time, they did more genetic testing, all of which continued to come back as normal allowing us to breathe a sigh of relief...
Clayton was on a feeding tube for the first three months after we got him home. We hated putting that thing in and out. I remember there was one night I saw blood in it and freaked out calling our home health nurse. She's been with us from the beginning, but I digress.
Every other week we would drive to Pensacola to see Clayton's nephrologist. We also checked in reguraly with his two urologist at two different hospitals. As time passed, we got to spread these appointments out more and more. But we also had to throw a cardiologist and orthopedic surgeon into the mix. Clayton had hyper tension we had to treat and his scoliosis started to develop around six months. We also picked up a neurologist, a geneticist and an ENT along the way. The next two and half years were spent doing two more small outpatient surgeries at UAB and visiting all of these doctors routinely. When it finally seemed like things were slowing down and stabilizing, we checked in with all of the doctors in a couple month's time to get the go ahead for me to start working. It seemed like I had the all clear. So on October 23, 2011 I started work for the first time since Clayton was born. On November 22, 2011 he was diagnosed with cancer. Oh yes, this is that "are you kidding me" moment.
Y'all know what happened since then. What you don't know is this... After he was diagnosed, our geneticist was consulted to do more testing. They were looking for a link between everything. If they could find the link it could help them to better treat everything. There had been a test the geneticist had wanted to do before, that insurance would not have covered, but now that he had cancer they were willing to cover it, so we sent those and a couple of others off and went about our treatment. We were sitting in the clinic one day last February, when the geneticist walked in and gave us the news. One of the tests had come back positive. The tests that insurance would not cover before. Right there in the middle of cancer and in the middle of a room of people we got the news. We (mostly me) made the decision not to tell anyone. We told our parents that they discovered the specific gene mutation that was responsible for the various medical problems we were confronting and was also responsible for his developmental delay. Completely true. We also told our parents that many children with this gene mutation often have delays, but catch up by grade school. Again, true. I know they did not like being kept in the dark, but it was not their choice and this has been mine and George's issue to deal with and process. Everyone else's wants and needs as far as being kept in the loop were secondary to George and I doing what was right for us.
George and I use to wonder if we just weren't as good at interacting with Clayton and teaching him as other parents were with their kids. For a couple of years, we went back and forth between "it's him" and "it's us". This has been hard for both George and I (probably mostly me) to come to terms with and even harder because this particular syndrome is not common, not well known and has a wide spectrum of developmental delay. Many children grow out of their developmental delay by grade school and have perfectly normal IQs, however, there is a chance that the delay could persist beyond that. There is no way to know other than to wait and see. Serious concerns associated with this syndrome would be a huge deal if we were not already faced with them: scoliosis, frequent upper respiratory infections, heart defects and cancer among others. Less serious side effects we have already seen include excessive growth in childhood that levels out during teen years, premature tooth eruption, nystagmus (eye movements) and poor temperature control. It also puts Clayton at an increased risk for seizures, pre-diabetes and thyroid disorders.
As silly as it might sound, I am not going to give the particular name of the syndrome. If people Google it, they might get an inaccurate picture in their heads and I don't want that for Clayton. People hear down syndrome and they don't need to Google it, most of us are aware of the general things associated with down syndrome. If somebody heard the name of this syndrome, the response would be a "huh?" The idea of limiting Clayton breaks my heart. Clayton will grow up in this community and I don't want him to be limited as he grows because some stigma regarding this syndrome was placed on him as a child. He might be delayed all of his life and very much like a child with down syndrome, but he might also end up being completely normal developmentally. If he ends up being completely normal developmentally, I would hate for anyone to ever judge him based off of this syndrome. It sucks, because it isn't fair to allow this syndrome the opportunity to limit him, but it also isn't fair to expect more of him than he will ever be able to give. At this point we have no idea what to expect. All we know is he is an amazingly smart little boy. He takes in everything, he just doesn't put it back out. So we wait...
For some of you this may seem silly and not be a big deal. Maybe I am being semi dramatic. I love my child, I want to give him the world and I HATE the idea of him ever being limited more than he already will be. He is four years old and already, he will never be able to have kids. For years he will be limited by the rod we are most likely going to be inserting in his back after traction. He only has one functioning kidney and so contact sports are out of the question. He has so many physical limitations, that the idea of putting any unnecessary mental limitations on him breaks my heart. Maybe its stupid, but not putting a name to it right now helps me in some weird way.
I can't say that this post is everything I want it to be, but if I continue to think about it, I will again read, erase and draft it as I have done for months. I am really ready to get it out there. Maybe this is a step by step process and this is just one of the steps. Acknowledgement. I suppose the next step is complete acceptance; which I suppose is my hesitation, I don't know what I'm accepting, because I have no idea how this journey will go.
Our life with pediatric cancer was lonely before we went to NYC and in that same way our life not knowing what to expect with Clayton's development was lonely before he started his preschool program that is for children with delays. That has put me in touch with other local moms since last August and that has helped so much. Two of us had our kids on a play date one day and were talking about how we respond when people ask us about it. This mother was in the same situation as me; her child's situation had a wide spectrum of developmental range and they have no idea where their child might end up. It really is a frustrating thing. You want to be able to answer people, but the truth is you have no flipping clue! Meeting these other moms, even though we don't see each other much, it has helped me enormously. If you know a mother with a special needs child, she is more amazing than you will ever realize I promise! The sacrifices these mothers make and the struggles they endure are beyond character building; it is a testament to the kinds of women these ladies are because there are a lot of people who couldn't handle it and would choose to walk away.
Which brings me to another thing...George. (forgive me, I am not good at public stuff like this, but George knows that ;) ) He is a wonderful man. Many men would have walked away a long time ago, but George can't get enough of Clayton. All of our trials break his heart, but only make him love Clayton more. Not all men can handle these things. For the men that do though, they are a rare breed. They not only stand by their child throughout everything, but they stand by their wives who have to battle the emotions and hormones that come from a life with these sorts trials and tribulations. I can honestly say, that there has never once been a time when I felt like George might walk away because Clayton's life was too much for him. So for all of those dads that out there like George, they deserve a big something. I'm not sure what it is, but they deserve it. Maybe its simply admiration or respect. I don't know. In case the Duck Commanders ever read this, George deserves an awesome duck hunting trip...wink, wink.
No matter how our journey continues, Clayton is AMAZING! Once he gets to know you, he is so loving and silly, silly, silly. He wants to be by you all the time and he cuddles...he is perfect. NO matter how he develops, I wouldn't change it, I only wish I knew what to expect. The unknown is hard. I could not imagine a more perfect child though. He is especially perfect for me and George.
To all of those couples standing by each other through the toughest of times and to all of those parents standing by their children when things don't turn out as planned...
When I was fourteen weeks pregnant, I had an ultrasound that revealed my child had a dangerously large bladder. My normal OB recommended I see a specialist ASAP. Of course their ASAP would have been two weeks later. Lucky me, I knew somebody who knew somebody and so a specialist in Mobile saw us that same afternoon...long drive. We got there, the Tommy Bahama-shirt wearing doctor did an ultrasound and calmly proceeded to tell us our options:
Our baby had an enlarged bladder likely caused by an obstruction at the base of his ureter. Otherwise known as UPJ (for short). We would need to do an amniocentesis to drain the bladder. After that, there was a 50/50 chance it could reoccur. If it reoccurred, we would likely need to go to Cincinnati to see some very elite specialists. We would have to wait and see. There was more. Having any kind of issues like this especially this early on, can be a marker for syndromes. What? We would need to spend the weekend thinking about whether we wanted to proceed with the amniocentesis and run genetic testing on the amniotic fluid or in light of the complication and high risk for a syndrome, we could decide to terminate the pregnancy. Whatever we decided, we were due back to see the doctor the following Monday. All of the news was overwhelming to say the least. On the drive home, I remember telling myself, "wait until your home alone to cry, just hold it in.". I remember George on the phone with a friend talking about cooking out and my thinking what the hell? How can he go to a cookout? We just found out that if we continue with this pregnancy then our child will likely have a syndrome and he wants to go to a cookout? Apparently he did. He went to his cookout and I went home and wallowed on everything. I remember crying and screaming on my Mom's porch the next day. I couldn't believe the whole situation. For those who don't know the back story, I'll give you the cliff notes: George and I were not married and like so so many others, we got pregnant on accident. It isn't something I talk about because well, it isn't anybody's business and there are a lot of judgmental people out there, but it is a part of this story. I think some people might have doubted we would ever last, but here we are on this side of hell, still together. So back to it... I was a distraught 21-year-old screaming and crying on my mother's porch because my accidental pregnancy had just turned into something so so much more. I had a choice, I could have terminated the pregnancy and gone back to being a semi care free 21 year old once again. I'm just not built that way. I was taught you take responsibility for your actions. And while I am very much a pro choice kind of woman, I don't believe in abortion without justifiable cause and for me, accidentally getting pregnant was not justifiable. So I made my choice to keep going. And for those wondering, I did involve George in the decision process. Thankfully, we were on the same page with everything.
George was quite sweet about it. I asked him in the car one day how he would be if our child did have down syndrome (this was the syndrome doctors mentioned most to us) and I'll never forget his response; he said, "I think I would be fine. I even think I would be partial to a child with a mental disability." George has a sweet aunt who has a mental disability and so he has grown up interacting with her and so the idea of loving and caring for someone with a disability wasn't uncommon to him. He grew up watching his father's love for his aunt and seeing how well his father and uncles cared for her. To him it seemed natural...it seemed normal. For me it scared the hell out of me. I was always the person who saw anybody with any kind of disability and wished I could do something, anything for them, but never knew how to interact with them very well. There was so much about the disabled I did not understand. I remember my mom told me it would be a blessing, she said that when other children can be cruel and mean (I know she meant me), she said children with disabilities like down syndrome will love you always.
The following Monday we went in, did an amniocentesis to drain the bladder and they drew amniotic fluid for genetic testing. More cliff notes: The rest of the pregnancy was filled with every other week appointments and toward the end even twice a week appointments. We were watching to see if the retention from the bladder caused any kidney damage. We did find kidney damage, though the doctor said it would be hard to know anything for sure until the baby was here. We also learned that the testing on the amniotic fluid showed no signs of a syndrome...
On November 5, 2008, Clayton was born. After a whopping 20 hours of labor, he was here. The umbilical cord had been wrapped around his neck, and I remember the fear waiting to hear him cry. Thank god he did. One of what seemed like 15 nurses in my room, gave me a super quick glance and whisked him off to the NICU (and when I say super quick I mean like a one second glance I didn't see coming). This picture was the first good look I got at Clayton:
The next few days were a blur of, "yes, he has kidney issues...you will need to go to UAB...we are going to need to do surgery...". Before surgery:
Only one of his kidneys was functioning and it was only functioning and about 1/3 of what it should have. They operated on him at 10 days old to try and repair the functioning kidney and give him the best chance possible. After surgery:
The surgery was a success, but the recovery was awful. The swelling was horrible!!! We spent his first 65 days in the NICU before we were allowed to go home. During this time, they did more genetic testing, all of which continued to come back as normal allowing us to breathe a sigh of relief...
Clayton was on a feeding tube for the first three months after we got him home. We hated putting that thing in and out. I remember there was one night I saw blood in it and freaked out calling our home health nurse. She's been with us from the beginning, but I digress.
Every other week we would drive to Pensacola to see Clayton's nephrologist. We also checked in reguraly with his two urologist at two different hospitals. As time passed, we got to spread these appointments out more and more. But we also had to throw a cardiologist and orthopedic surgeon into the mix. Clayton had hyper tension we had to treat and his scoliosis started to develop around six months. We also picked up a neurologist, a geneticist and an ENT along the way. The next two and half years were spent doing two more small outpatient surgeries at UAB and visiting all of these doctors routinely. When it finally seemed like things were slowing down and stabilizing, we checked in with all of the doctors in a couple month's time to get the go ahead for me to start working. It seemed like I had the all clear. So on October 23, 2011 I started work for the first time since Clayton was born. On November 22, 2011 he was diagnosed with cancer. Oh yes, this is that "are you kidding me" moment.
Y'all know what happened since then. What you don't know is this... After he was diagnosed, our geneticist was consulted to do more testing. They were looking for a link between everything. If they could find the link it could help them to better treat everything. There had been a test the geneticist had wanted to do before, that insurance would not have covered, but now that he had cancer they were willing to cover it, so we sent those and a couple of others off and went about our treatment. We were sitting in the clinic one day last February, when the geneticist walked in and gave us the news. One of the tests had come back positive. The tests that insurance would not cover before. Right there in the middle of cancer and in the middle of a room of people we got the news. We (mostly me) made the decision not to tell anyone. We told our parents that they discovered the specific gene mutation that was responsible for the various medical problems we were confronting and was also responsible for his developmental delay. Completely true. We also told our parents that many children with this gene mutation often have delays, but catch up by grade school. Again, true. I know they did not like being kept in the dark, but it was not their choice and this has been mine and George's issue to deal with and process. Everyone else's wants and needs as far as being kept in the loop were secondary to George and I doing what was right for us.
George and I use to wonder if we just weren't as good at interacting with Clayton and teaching him as other parents were with their kids. For a couple of years, we went back and forth between "it's him" and "it's us". This has been hard for both George and I (probably mostly me) to come to terms with and even harder because this particular syndrome is not common, not well known and has a wide spectrum of developmental delay. Many children grow out of their developmental delay by grade school and have perfectly normal IQs, however, there is a chance that the delay could persist beyond that. There is no way to know other than to wait and see. Serious concerns associated with this syndrome would be a huge deal if we were not already faced with them: scoliosis, frequent upper respiratory infections, heart defects and cancer among others. Less serious side effects we have already seen include excessive growth in childhood that levels out during teen years, premature tooth eruption, nystagmus (eye movements) and poor temperature control. It also puts Clayton at an increased risk for seizures, pre-diabetes and thyroid disorders.
As silly as it might sound, I am not going to give the particular name of the syndrome. If people Google it, they might get an inaccurate picture in their heads and I don't want that for Clayton. People hear down syndrome and they don't need to Google it, most of us are aware of the general things associated with down syndrome. If somebody heard the name of this syndrome, the response would be a "huh?" The idea of limiting Clayton breaks my heart. Clayton will grow up in this community and I don't want him to be limited as he grows because some stigma regarding this syndrome was placed on him as a child. He might be delayed all of his life and very much like a child with down syndrome, but he might also end up being completely normal developmentally. If he ends up being completely normal developmentally, I would hate for anyone to ever judge him based off of this syndrome. It sucks, because it isn't fair to allow this syndrome the opportunity to limit him, but it also isn't fair to expect more of him than he will ever be able to give. At this point we have no idea what to expect. All we know is he is an amazingly smart little boy. He takes in everything, he just doesn't put it back out. So we wait...
For some of you this may seem silly and not be a big deal. Maybe I am being semi dramatic. I love my child, I want to give him the world and I HATE the idea of him ever being limited more than he already will be. He is four years old and already, he will never be able to have kids. For years he will be limited by the rod we are most likely going to be inserting in his back after traction. He only has one functioning kidney and so contact sports are out of the question. He has so many physical limitations, that the idea of putting any unnecessary mental limitations on him breaks my heart. Maybe its stupid, but not putting a name to it right now helps me in some weird way.
I can't say that this post is everything I want it to be, but if I continue to think about it, I will again read, erase and draft it as I have done for months. I am really ready to get it out there. Maybe this is a step by step process and this is just one of the steps. Acknowledgement. I suppose the next step is complete acceptance; which I suppose is my hesitation, I don't know what I'm accepting, because I have no idea how this journey will go.
Our life with pediatric cancer was lonely before we went to NYC and in that same way our life not knowing what to expect with Clayton's development was lonely before he started his preschool program that is for children with delays. That has put me in touch with other local moms since last August and that has helped so much. Two of us had our kids on a play date one day and were talking about how we respond when people ask us about it. This mother was in the same situation as me; her child's situation had a wide spectrum of developmental range and they have no idea where their child might end up. It really is a frustrating thing. You want to be able to answer people, but the truth is you have no flipping clue! Meeting these other moms, even though we don't see each other much, it has helped me enormously. If you know a mother with a special needs child, she is more amazing than you will ever realize I promise! The sacrifices these mothers make and the struggles they endure are beyond character building; it is a testament to the kinds of women these ladies are because there are a lot of people who couldn't handle it and would choose to walk away.
Which brings me to another thing...George. (forgive me, I am not good at public stuff like this, but George knows that ;) ) He is a wonderful man. Many men would have walked away a long time ago, but George can't get enough of Clayton. All of our trials break his heart, but only make him love Clayton more. Not all men can handle these things. For the men that do though, they are a rare breed. They not only stand by their child throughout everything, but they stand by their wives who have to battle the emotions and hormones that come from a life with these sorts trials and tribulations. I can honestly say, that there has never once been a time when I felt like George might walk away because Clayton's life was too much for him. So for all of those dads that out there like George, they deserve a big something. I'm not sure what it is, but they deserve it. Maybe its simply admiration or respect. I don't know. In case the Duck Commanders ever read this, George deserves an awesome duck hunting trip...wink, wink.
No matter how our journey continues, Clayton is AMAZING! Once he gets to know you, he is so loving and silly, silly, silly. He wants to be by you all the time and he cuddles...he is perfect. NO matter how he develops, I wouldn't change it, I only wish I knew what to expect. The unknown is hard. I could not imagine a more perfect child though. He is especially perfect for me and George.
To all of those couples standing by each other through the toughest of times and to all of those parents standing by their children when things don't turn out as planned...
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