Thankful
I typically don't do "thankful" posts in November because I feel like they are generally super hokey, but I was struck the other day with how content I have been feeling lately and started thinking about why that is...which got me thinking about all the people and things in life I truly am thankful for. There are plenty of things that are more about me personally (my work, my future plans for work, personal fulfillment, etc.) but since I started this blog about Eli, I'm going to keep it to things that pertain to him. Also this is very stream of consciousness and it's very late and I should be packing and cooking and doing 100 other things instead of writing this. So forgive my lazy writing style, please. Here goes, I'm going to be super lame and talk about a bunch of things I'm thankful for.
Eli: Ok so this is kind of obvious but it's true! I am so thankful Eli is the kid we ended up with. He definitely has moments when he's a little jerk (the terrible twos are coming and he is making that CLEAR), but honestly he's the happiest, goofiest, funniest kid I know and he is exactly what we needed. Whenever I'm feeling down about his diagnosis I remind myself that I could either have him, exactly as he is, or if we hadn't had him we would have ended up with a completely different child altogether. I never allow myself to think about having him WITHOUT his diagnosis, because that is genetically impossible. Will and I are neither one the most emotive people, but every night after Eli is in bed one of us will inevitably pick up the monitor and say "Look at that kid. He's the best. I love him so much." and the other will agree that yes, we do in fact have the best and most precious child in the whole world. We're THOSE people now and I'm 100% ok with it.
Eli's doctors: We've gotten extremely lucky here and we have loved most of Eli's doctors from the first time we met them. We did have one speciality where I moved him to a new doctor and might have given the old doctor a verbal smackdown, but that is not the norm. I could sing the praises of his geneticist, genetic counselor, pediatrician, and endocrinologist in particular all day. Especially his pediatrician. She acknowledges my crazy and accepts it. All I have to do is call her office and tell her I need a referral for something and explain why I want the referral and she handles it right away. She recognizes her limitations and understands that I probably know more about Eli's disease than her, and she's totally fine with supportin g me and never argues or makes me feel like a dumb parent or treats me condescendingly.
Our family and friends: We are so lucky to have so many people who love us and love Eli unconditionally. I know there isn't a single person in our lives who will ever make Eli feel "less than" or doubt his abilities in the slightest. He has so many people who will champion him. People he hasn't even met yet! And I know now that these people have been exposed to dwarfism and what it means, they will be steadfast allies for the rest of their lives. And it goes beyond just supporting him because of his differences. I know I have family down the road who, if I call and tell them I'm having a bad day, would think nothing of coming over and bringing me dinner and letting me complain for a while. I have a best friend who has had a passion for kids with differences (she's a speech therapist now) for our entire lives, who is always sending me helpful information and asking about his development. I have another best friend who is a dentist, and a kid who is almost certainly going to need a lot of dental work. Like, I couldn't have picked better friends if I had tried.
My parents: They are included in family and friends but they deserve their own section. First of all, my mom is basically Eli's third parent. One of the things people don't realize about having a kid with lots of issues is how many appointments they have. They've slowed down a lot in the past few months, but they will never end. When Eli was first released from the NICU he had multiple appointments most weeks. And we still had jobs, so it gets really hard to balance everything. My mom steps in whenever she can and takes him to appointments, meets us at appointments and takes him to his nanny afterward, takes him to the pediatrician and calls me from the office so I can ask the pediatrician my questions over the phone...whatever she needs to do. I make fun of her because she is a stay at home mom with no kids at home, but we really couldn't give Eli everything he needs without her help. And my dad...anyone who has been around Eli and my dad can tell you Eli is OBSESSED with my dad. My dad is by far Eli's favorite person in the whole world. It's slightly annoying (because we all know my dad is the favorite because he NEVER tells Eli no), but mostly it's the cutest thing ever. My dad embraces Eli's dwarfism probably more than anyone else we are close to. He is proud to tell people about Eli having dwarfism. He says his main goal is to never ever ever make Eli feel small, and I know he won't.
Eli's nanny: Eli was in a daycare we loved, but we had the opportunity to move to a nanny share back in May, and it was the best decision we could have made. I'm pretty sure Eli's nanny loves him almost as much as we love him, and almost as much as she loves her own kids. We joke that if Will and I died, she would probably fight my parents for custody and try to adopt him. I spend a lot of time worrying about Eli for various reasons. He's turning his right foot in, does he have hip dysplasia? He fell and hit his head, was that where he still has a soft spot? Should I call his neurosurgeon? He's sniffly today...should we up his allergy medicine or is he getting bronchiolitis or does he have an ear infection? He rubbed his head, is he having headaches because of the chiari malformation but he can't verbalize that? I could go on all day. Anyway, it's SO nice that I never ever worry about where we leave him during the day while we're at work. I know his nanny takes care of him probably BETTER than I would. She is definitely more patient and has way more kid-raising experience than I do. She works with him so much and celebrates his successes along with us and she's a big part of why he is even able to achieve the successes he does. She is tireless. And she makes it possible for me to keep working toward my career goals without the mom-guilt.
Therapy: I have been pretty open about my struggles with anxiety and PTSD, and I really could not be as mentally healthy as I am without my therapist. She's the bomb. I honestly do not understand people who think therapy is "weak" or whatever. Therapy is awesome. I think EVERYONE should go to therapy. I'd go twice a week if I could afford it. I finally talked Will into going as well and I know he enjoys having someone nonjudgmental to talk to. I can see he just feels lighter when he comes home, and that makes me happy. I am honestly like Oprah when it comes to suggesting therapy, "You go to therapy and you go to therapy and you go to therapy! Everybody go to therapy!"
Social media: This kind of goes along with the family and friends...but I've met so many NEW friends who have kids similar to Eli, and that would not have been possible 20 years ago. Facebook has allowed me to find other people with KCS2, which is amazing in itself since there have been fewer than 60 of them ever recorded. It's wonderful to have a group of people who understand the struggle of finding ride-on toys or play kitchens short enough for my kid, the annoyance when people stare at you weirdly when you tell them how old your kid is (because he looks way younger), the frustration of dealing with doctors and insurance, and the exhaustion of tireless advocacy.
Cher: I mean lets be real you didn't think I could write everything I'm thankful for and NOT mention her right? How can I relate this to Eli...? Ok, so I did an experiment and when I was pregnant I listened to "If I Could Turn Back Time" almost every day on my way to and from work SUPER loud, and now it's STILL the only thing that will calm Eli down if he is really upset. I just have to play the song and he stops crying right away. But I prefer to pull up the music video on YouTube and tell Eli to look at Grandma Cher and how beautiful she is. It's amazing and I am so proud and no this is not a joke and yes I definitely want to see how long it takes Eli to become un-brainwashed. Don't lie, you wish you had thought of an experiment as cool as mine.
Will: This maybe isn't about Eli as much as it's about me but oh well. I am so thankful for Will. I definitely don't spend a ton of time waxing poetic about him on social media because I generally think people who do that are trying to make up for something, but that's just me. And I'm not trying to brag with any of this, but it is what it is. I know people are more likely to divorce after a traumatic event (such as a disabled child), and that divorce rates are higher in high school sweetheart couples, but our marriage has never been shaky throughout this experience. We've been asked about it (by our therapists and by psychologists at the hospital who are there for parent support) and I think it's a question that is almost surprising to us because it's just not something we think about. We definitely fight (I mean, if you're reading this you probably know me, so...), but when it comes to the big things like Eli's healthcare decisions, decisions about future children, what would happen to Eli if we both died...we are either on the same page or we understand where the other is coming from. I think we clung to each other more than usual in the really tough times when things surrounding Eli were uncertain. But I think after Will's mom died we decided we were going to be together and if we could make it through that terrible experience, we could make it through anything. Most of the time I feel like we haven't been married all that long (because we haven't...) but then I think about how many people we know who have been married and divorced since we got married, and I'm pretty proud of us. I drive him crazy because I'm obsessed with the movie The Way We Were but I really do relate us to the characters of Hubbell and Katie so much. Except we don't break up in the end. I am EXTRA in everything I do and feel, and Will is steady in everything he does. He is absolutely the calm to my storm and I couldn't make it through everything without him.
God: I won't lie here. I've spent a lot of time mad at God for allowing this to happen to us and I'm still not over it, but I also try to recognize the things that have been fortuitously placed in our lives that make it easier. The people in our lives, as I've mentioned. We live in Dallas with access to amazing doctors and hospitals. If it's really necessary we have the means to travel to seek out specialists for Eli, and with my parents behind us we know Eli will never go without anything he needs, which is a luxury few people in our situation have. We have the intelligence and education to understand Eli's diagnosis in a pretty in-depth way. We have the job flexibility to go to most of his appointments with him. And frankly we live in a developed nation in the 21st century. It is never lost on me that if he had been born 100 years earlier, Eli would most likely be dead. If we were in a third world country right now...Eli probably would have died as a baby. And say what you will about Obamacare (but not to me...read my last blog post and thanks for coming to my Ted talk, byeee) but Eli was born after pre-existing condition coverage and no lifetime limit mandates came into play and I will be grateful for that forever (unless those get taken away, in which case I will NEVER stop fighting for those things to be reinstated). If Eli had been born in 2012 the KCS2 gene wouldn't have been isolated yet and we might still be living in undiagnosed hell. I guess what I'm trying to say is...I'm still pretty pissed but I recognize the blessings that have come our way as well.
I don't have a good way to end this besides saying there are probably plenty of things and people I forgot but I tried. This writing is probably crap because I'm extremely tired by now. Have a good Thanksgiving.
Eli: Ok so this is kind of obvious but it's true! I am so thankful Eli is the kid we ended up with. He definitely has moments when he's a little jerk (the terrible twos are coming and he is making that CLEAR), but honestly he's the happiest, goofiest, funniest kid I know and he is exactly what we needed. Whenever I'm feeling down about his diagnosis I remind myself that I could either have him, exactly as he is, or if we hadn't had him we would have ended up with a completely different child altogether. I never allow myself to think about having him WITHOUT his diagnosis, because that is genetically impossible. Will and I are neither one the most emotive people, but every night after Eli is in bed one of us will inevitably pick up the monitor and say "Look at that kid. He's the best. I love him so much." and the other will agree that yes, we do in fact have the best and most precious child in the whole world. We're THOSE people now and I'm 100% ok with it.
Eli's doctors: We've gotten extremely lucky here and we have loved most of Eli's doctors from the first time we met them. We did have one speciality where I moved him to a new doctor and might have given the old doctor a verbal smackdown, but that is not the norm. I could sing the praises of his geneticist, genetic counselor, pediatrician, and endocrinologist in particular all day. Especially his pediatrician. She acknowledges my crazy and accepts it. All I have to do is call her office and tell her I need a referral for something and explain why I want the referral and she handles it right away. She recognizes her limitations and understands that I probably know more about Eli's disease than her, and she's totally fine with supportin g me and never argues or makes me feel like a dumb parent or treats me condescendingly.
Our family and friends: We are so lucky to have so many people who love us and love Eli unconditionally. I know there isn't a single person in our lives who will ever make Eli feel "less than" or doubt his abilities in the slightest. He has so many people who will champion him. People he hasn't even met yet! And I know now that these people have been exposed to dwarfism and what it means, they will be steadfast allies for the rest of their lives. And it goes beyond just supporting him because of his differences. I know I have family down the road who, if I call and tell them I'm having a bad day, would think nothing of coming over and bringing me dinner and letting me complain for a while. I have a best friend who has had a passion for kids with differences (she's a speech therapist now) for our entire lives, who is always sending me helpful information and asking about his development. I have another best friend who is a dentist, and a kid who is almost certainly going to need a lot of dental work. Like, I couldn't have picked better friends if I had tried.
My parents: They are included in family and friends but they deserve their own section. First of all, my mom is basically Eli's third parent. One of the things people don't realize about having a kid with lots of issues is how many appointments they have. They've slowed down a lot in the past few months, but they will never end. When Eli was first released from the NICU he had multiple appointments most weeks. And we still had jobs, so it gets really hard to balance everything. My mom steps in whenever she can and takes him to appointments, meets us at appointments and takes him to his nanny afterward, takes him to the pediatrician and calls me from the office so I can ask the pediatrician my questions over the phone...whatever she needs to do. I make fun of her because she is a stay at home mom with no kids at home, but we really couldn't give Eli everything he needs without her help. And my dad...anyone who has been around Eli and my dad can tell you Eli is OBSESSED with my dad. My dad is by far Eli's favorite person in the whole world. It's slightly annoying (because we all know my dad is the favorite because he NEVER tells Eli no), but mostly it's the cutest thing ever. My dad embraces Eli's dwarfism probably more than anyone else we are close to. He is proud to tell people about Eli having dwarfism. He says his main goal is to never ever ever make Eli feel small, and I know he won't.
Eli's nanny: Eli was in a daycare we loved, but we had the opportunity to move to a nanny share back in May, and it was the best decision we could have made. I'm pretty sure Eli's nanny loves him almost as much as we love him, and almost as much as she loves her own kids. We joke that if Will and I died, she would probably fight my parents for custody and try to adopt him. I spend a lot of time worrying about Eli for various reasons. He's turning his right foot in, does he have hip dysplasia? He fell and hit his head, was that where he still has a soft spot? Should I call his neurosurgeon? He's sniffly today...should we up his allergy medicine or is he getting bronchiolitis or does he have an ear infection? He rubbed his head, is he having headaches because of the chiari malformation but he can't verbalize that? I could go on all day. Anyway, it's SO nice that I never ever worry about where we leave him during the day while we're at work. I know his nanny takes care of him probably BETTER than I would. She is definitely more patient and has way more kid-raising experience than I do. She works with him so much and celebrates his successes along with us and she's a big part of why he is even able to achieve the successes he does. She is tireless. And she makes it possible for me to keep working toward my career goals without the mom-guilt.
Therapy: I have been pretty open about my struggles with anxiety and PTSD, and I really could not be as mentally healthy as I am without my therapist. She's the bomb. I honestly do not understand people who think therapy is "weak" or whatever. Therapy is awesome. I think EVERYONE should go to therapy. I'd go twice a week if I could afford it. I finally talked Will into going as well and I know he enjoys having someone nonjudgmental to talk to. I can see he just feels lighter when he comes home, and that makes me happy. I am honestly like Oprah when it comes to suggesting therapy, "You go to therapy and you go to therapy and you go to therapy! Everybody go to therapy!"
Social media: This kind of goes along with the family and friends...but I've met so many NEW friends who have kids similar to Eli, and that would not have been possible 20 years ago. Facebook has allowed me to find other people with KCS2, which is amazing in itself since there have been fewer than 60 of them ever recorded. It's wonderful to have a group of people who understand the struggle of finding ride-on toys or play kitchens short enough for my kid, the annoyance when people stare at you weirdly when you tell them how old your kid is (because he looks way younger), the frustration of dealing with doctors and insurance, and the exhaustion of tireless advocacy.
Cher: I mean lets be real you didn't think I could write everything I'm thankful for and NOT mention her right? How can I relate this to Eli...? Ok, so I did an experiment and when I was pregnant I listened to "If I Could Turn Back Time" almost every day on my way to and from work SUPER loud, and now it's STILL the only thing that will calm Eli down if he is really upset. I just have to play the song and he stops crying right away. But I prefer to pull up the music video on YouTube and tell Eli to look at Grandma Cher and how beautiful she is. It's amazing and I am so proud and no this is not a joke and yes I definitely want to see how long it takes Eli to become un-brainwashed. Don't lie, you wish you had thought of an experiment as cool as mine.
Will: This maybe isn't about Eli as much as it's about me but oh well. I am so thankful for Will. I definitely don't spend a ton of time waxing poetic about him on social media because I generally think people who do that are trying to make up for something, but that's just me. And I'm not trying to brag with any of this, but it is what it is. I know people are more likely to divorce after a traumatic event (such as a disabled child), and that divorce rates are higher in high school sweetheart couples, but our marriage has never been shaky throughout this experience. We've been asked about it (by our therapists and by psychologists at the hospital who are there for parent support) and I think it's a question that is almost surprising to us because it's just not something we think about. We definitely fight (I mean, if you're reading this you probably know me, so...), but when it comes to the big things like Eli's healthcare decisions, decisions about future children, what would happen to Eli if we both died...we are either on the same page or we understand where the other is coming from. I think we clung to each other more than usual in the really tough times when things surrounding Eli were uncertain. But I think after Will's mom died we decided we were going to be together and if we could make it through that terrible experience, we could make it through anything. Most of the time I feel like we haven't been married all that long (because we haven't...) but then I think about how many people we know who have been married and divorced since we got married, and I'm pretty proud of us. I drive him crazy because I'm obsessed with the movie The Way We Were but I really do relate us to the characters of Hubbell and Katie so much. Except we don't break up in the end. I am EXTRA in everything I do and feel, and Will is steady in everything he does. He is absolutely the calm to my storm and I couldn't make it through everything without him.
God: I won't lie here. I've spent a lot of time mad at God for allowing this to happen to us and I'm still not over it, but I also try to recognize the things that have been fortuitously placed in our lives that make it easier. The people in our lives, as I've mentioned. We live in Dallas with access to amazing doctors and hospitals. If it's really necessary we have the means to travel to seek out specialists for Eli, and with my parents behind us we know Eli will never go without anything he needs, which is a luxury few people in our situation have. We have the intelligence and education to understand Eli's diagnosis in a pretty in-depth way. We have the job flexibility to go to most of his appointments with him. And frankly we live in a developed nation in the 21st century. It is never lost on me that if he had been born 100 years earlier, Eli would most likely be dead. If we were in a third world country right now...Eli probably would have died as a baby. And say what you will about Obamacare (but not to me...read my last blog post and thanks for coming to my Ted talk, byeee) but Eli was born after pre-existing condition coverage and no lifetime limit mandates came into play and I will be grateful for that forever (unless those get taken away, in which case I will NEVER stop fighting for those things to be reinstated). If Eli had been born in 2012 the KCS2 gene wouldn't have been isolated yet and we might still be living in undiagnosed hell. I guess what I'm trying to say is...I'm still pretty pissed but I recognize the blessings that have come our way as well.
I don't have a good way to end this besides saying there are probably plenty of things and people I forgot but I tried. This writing is probably crap because I'm extremely tired by now. Have a good Thanksgiving.
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