They say you have a friend for every purpose, and the older I get, the more and more I realize this truly is the case. Some friends are there for the comic relief. Others are oldies, but goodies, where no explanation is needed, you just can "be". Some are there to give you a reality check, others are there to help you dream. Some are there to laugh with you. Others are there to laugh at you. Some have seen you only at your best, some only at your worst, and some have seen you at your best and worst at the same time. I am lucky. I have an amazing bouquet of friends who enrich my life in so many beautiful ways.
And then there are the friends who also have a deaf kid who wears Cochlear Implants.
Sometimes we talk about "deaf" stuff, other times we just laugh and watch our kids play. The binding thread though is that they just GET IT. When you look at these friends, you know they've had the same pits in their stomach, they've celebrated the same milestones, and also grieved something so complicated yet so basic. The same sacrifices have been made, family stories have been rewritten, and journeys have taken different roads than planned. These friendships are so very important to me. These beautiful women keep me sane, they keep me grounded, and they remind me just by their smiles when they replace a coil or check a battery that I am not alone.
Our Family's Cochlear Implant Journey
Showing posts with label reflection. Show all posts
Showing posts with label reflection. Show all posts
Thursday, August 12, 2010
Friday, July 23, 2010
Cherish.
I was sitting in the backyard yesterday watching the kids run around and be silly. They just finished popsicles, and the cicadas were buzzing. They both were laughing, especially Christian. I had this wave of emotion come over me, and as the tears rolled down my face it hit me: It's not always going to be like this.
A day will come when video games will replace sidewalk chalk. They won't beg me to play with them, rather they'll be begging me to leave them alone. Lily probably won't always want to wear her dresses, and Christian will put away Buzz LightYear and Woody. Sticky hands won't paw at me for hugs and kisses, and bedtime routines won't include stories. Our playroom won't be covered with Little People and MatchBox Cars.
My babies are growing up, especially Christian. I've noticed a change in him this past summer. He's taller, stronger, yet leaner. He's even more goofy than what he was before, making up jokes, and telling me about "Star Wars Guys", and creating elaborate long stories about his little fantasy play world in the playroom. It has been such a gift being able to stay at home with them, always being there for the little moments during the day. Patting Lily's back during a restless nap, having the two of them with me for lunch everyday, making snacks together, going on so many fun field trips, and even the car rides to and from school are moments I know I will cherish forever. I realized that instead of complaining about all these little things that come with having 2 kids exactly 2 years apart under the age of 4, I really need to try to embrace this beautiful, crazy, sleepless years before they disappear.
A day will come when video games will replace sidewalk chalk. They won't beg me to play with them, rather they'll be begging me to leave them alone. Lily probably won't always want to wear her dresses, and Christian will put away Buzz LightYear and Woody. Sticky hands won't paw at me for hugs and kisses, and bedtime routines won't include stories. Our playroom won't be covered with Little People and MatchBox Cars.
Tuesday, May 25, 2010
A Beautiful Gift--Looking Back at 6 Months Post Activation
This video was taken 6 months after Christian's Cochlear Implant activation. He was just about 20 months old. I remember this day like it was yesterday. I remember feeling my heart almost burst with joy listening to Christian's voice. This was such a moment of clarity for me, as I knew that he was going to be ok. All the uncertainty was replaced by a sense of wonder.
Sunday, May 9, 2010
Savoring the Moment
I woke up this morning to pancakes, eggs, and bacon made especially for me. I was showered with gifts, hugs, and kisses. I spent the afternoon walking around an art festival, then having a fun lunch out with my babies and my husband. I took a 2 hour long nap. I made Rice Krispie treats with Christian, and giggled with Lily as she played outside. Christian told me several times today "I love you so much Mom. Happy Mother's Day". And my heart melted.
I'm savoring these moments. They won't always be 3 and 1. They won't always have milk moustaches, pigtails with bows, and sippy cups. Life won't always be as simple as Peanut Butter and Jelly Sandwiches and Goldfish crackers. As hard and challenging as it is, life just doesn't get better than this. I love these days, even the ones that are followed by the sleepless nights. They won't always be this little, and while one day I will get the much needed rest I crave, I know I'll miss these days full of parkdates, juice boxes and never ending laughter.
Thursday, January 14, 2010
Even when you think you have it together
You don't.
I just pulled out an old notebook to make a To-Do list for myself, and came across notes from a conversation that I had with Christian's pediatrician very early on in his diagnosis. I can tell my handwriting is shaky, and if I close my eyes, I can actually hear her saying these words:
"He has fluid in his ear"
"He has positive signs that he is hearing"
So, instead of just throwing that page out or just flipping it over, I started to cry. And then, almost instinctively, I opened my laptop to blog about it. This blog started as a way for me to share my feelings, especially during my grieving process, then morphed into a place where we chronicled our journey with Christian. And here I am, almost 3 years later, still needing to write about my sadness.
I don't think this sadness will ever truly disappear, and I don't expect it to. It comes and goes, visiting me at bath time when his CI flashes it's "off" light as it sits on the ledge, and Christian's world is silent. Sometimes it comes at 3:30am when he wakes up from a nightmare, and the only way I can comfort him in the darkness is with a touch of my hand and my breath on his cheek. It's always there, most of the time hidden by all the laughter, songs, and words that fill our world. I fight it everyday, being proactive, fighting for Christian, celebrating who he is, and doing whatever I can for him to succeed.
I just pulled out an old notebook to make a To-Do list for myself, and came across notes from a conversation that I had with Christian's pediatrician very early on in his diagnosis. I can tell my handwriting is shaky, and if I close my eyes, I can actually hear her saying these words:
"He has fluid in his ear"
"He has positive signs that he is hearing"
So, instead of just throwing that page out or just flipping it over, I started to cry. And then, almost instinctively, I opened my laptop to blog about it. This blog started as a way for me to share my feelings, especially during my grieving process, then morphed into a place where we chronicled our journey with Christian. And here I am, almost 3 years later, still needing to write about my sadness.
I don't think this sadness will ever truly disappear, and I don't expect it to. It comes and goes, visiting me at bath time when his CI flashes it's "off" light as it sits on the ledge, and Christian's world is silent. Sometimes it comes at 3:30am when he wakes up from a nightmare, and the only way I can comfort him in the darkness is with a touch of my hand and my breath on his cheek. It's always there, most of the time hidden by all the laughter, songs, and words that fill our world. I fight it everyday, being proactive, fighting for Christian, celebrating who he is, and doing whatever I can for him to succeed.
Friday, January 8, 2010
More on Resolutions
Today I had an opportunity to really test out my New Years Resolution of working on patience, and I somehow managed my way through 2 meltdowns (one in the middle of a busy Northwest DC street), 1 diaper blow-out, 1 near accident in Bethesda thanks to a jerk who cut me off, and 1 very cranky preschooler who has "sassy" as his middle name. I found peace in those moments (channeling a dear friend of mine who lives around the corner from me, who always seems to find peace in chaos). After I found peace, I had a sense of calm that was completely unfamiliar. And I can't wait to feel it again.
I do think that your level of patience and level of stress in your life go hand in hand (although, I'm not sure how my dear friend who lives around the corner does find so much peace because I do know that she is stressed). So, in finding patience, I've learned that I need to cut down on the stress.
I hate to use this label, but as a Mom to a child with "Special Needs", we have a level of stress that will never go down. We are always anticipating, always waiting for the next shoe to drop. We're always on the defense, in our warrior Mom mode, ready with our armor, doing anything we can to fight for our child. That particular stress is so deeply embedded in my bones, that I really don't think about it anymore. It's a part of my body, partially to blame for the baggy eyes and too-early crows feet. I can do a pretty good job of hiding that stress when it does start to seep out. A strained laugh, a little bit of concealer, and a glass of wine usually do the trick. I get in trouble though when more and more stress is layered on top of that "in my bones" stress. Then it gets bad.
I started peeling back my layers of stress today, and I found that maybe really the only way to make it to my goal of finding more patience is to also find a way to be less stressed in my life. Some of my layers are so real and so important, that there's no way to rid them. I will ALWAYS be concerned about our financial future. We will ALWAYS want more family time. However, there were so many layers of things that didn't need to be there. And I can do something about them. I need to let them go. Maybe if I didn't have the "deep in my bones" stress that I have that goes along with raising a deaf child, I'd be able to deal a bit better. While this stress is a part of who I am, it also maxxes me out at times. I then am suffocated by the layers and layers of both little and big things, and I falter. I become the Mom with no patience. The wife who is annoyed. The friend who is hurt. I become the person I dread.
I'm obviously going to have this "deep in my bones" stress for as long as I shall live. I can't do anything about it. But all these little layers, these layers of things that really don't matter, I can rid myself of them. I can chose to say No. I can chose to not care. I can chose to ignore. I can chose my focus, which will always be advocating for Christian and giving my family the best of me everyday.
I do think that your level of patience and level of stress in your life go hand in hand (although, I'm not sure how my dear friend who lives around the corner does find so much peace because I do know that she is stressed). So, in finding patience, I've learned that I need to cut down on the stress.
I hate to use this label, but as a Mom to a child with "Special Needs", we have a level of stress that will never go down. We are always anticipating, always waiting for the next shoe to drop. We're always on the defense, in our warrior Mom mode, ready with our armor, doing anything we can to fight for our child. That particular stress is so deeply embedded in my bones, that I really don't think about it anymore. It's a part of my body, partially to blame for the baggy eyes and too-early crows feet. I can do a pretty good job of hiding that stress when it does start to seep out. A strained laugh, a little bit of concealer, and a glass of wine usually do the trick. I get in trouble though when more and more stress is layered on top of that "in my bones" stress. Then it gets bad.
I started peeling back my layers of stress today, and I found that maybe really the only way to make it to my goal of finding more patience is to also find a way to be less stressed in my life. Some of my layers are so real and so important, that there's no way to rid them. I will ALWAYS be concerned about our financial future. We will ALWAYS want more family time. However, there were so many layers of things that didn't need to be there. And I can do something about them. I need to let them go. Maybe if I didn't have the "deep in my bones" stress that I have that goes along with raising a deaf child, I'd be able to deal a bit better. While this stress is a part of who I am, it also maxxes me out at times. I then am suffocated by the layers and layers of both little and big things, and I falter. I become the Mom with no patience. The wife who is annoyed. The friend who is hurt. I become the person I dread.
I'm obviously going to have this "deep in my bones" stress for as long as I shall live. I can't do anything about it. But all these little layers, these layers of things that really don't matter, I can rid myself of them. I can chose to say No. I can chose to not care. I can chose to ignore. I can chose my focus, which will always be advocating for Christian and giving my family the best of me everyday.
Monday, January 12, 2009
Old Wounds Are Hard To Heal
I'm furious.
Not because of something that happened today, yesterday, last week, or last month. Not even something that happened last year.
I was in full nesting mode this evening, clearing out my desk, making labels, and getting everything in order to prepare for our little girl's arrival. I went to go place Christian's updated audiogram from Hopkins in his medical binder, and I started flipping through the pages. This binder is our bible. It's thick, and holds every single medical record I have on file for this kid that has to do with his hearing loss. It's meticulously organized and labeled. It comes to every appointment with us. All the contents are even scanned onto an archived drive for "just in case" moments.
At first, I was glancing at how much he progressed from going unaided, to aided, to implanted. Then, I flipped through our CI candidacy section, re-reading speech-language evaluations, genetic testing results, and even the psychological evaluation.
Then, I flipped to the only tab in the binder that isn't labeled, yet I know exactly what's in there.
The first document in that section is the red note that was given to us after Christian's newborn hearing screen. You see, at our hospital if your child passes the hearing screen, you get a green note with a smiley bear, which details the OAEs that they did, and a signature. If your child "refers" (come on, just call it what it is, it's failed), you get a red note, also with a smiley bear, that details the OAEs, and which ear(s) were tested. Our red note said that we referred on the right ear, but passed on the left...and then has a note on it "Unable to acquire OAEs in right ear, due to fluid in ears from C-Section delivery".
The second document in this section is a packet of information from the first ENT's office we went to to get Christian evaluated. A note from the ENT on the front to our pediatrician says "Normal hearing per attached OAEs. Possible eustachian tube dysfunction due to fluid in ears from C-Section". Yes, this was the well-respected doctor at one of DC's largest ENT practices who looked me, the brand-new Mom, in the eye and said "Christian can hear perfectly, look at how responsive he is".
The third, fourth, and fifth documents in this section are all from our very reputable Children's Hospital, all of which show no responses on his OAE, but yet in the notes section all have varying forms of "Needs more testing, refer to X audiologist".
Now I ask myself why didn't I ask more questions? Why did they piece together OAEs and DPOAEs at this office? Why did they assume that his hearing loss was due to fluid from a C-Section delivery? Were all of these doctors in disbelief?
Why didn't ANYONE...ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn't all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn't take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN'T ANYONE HELP MY SON?
Knowing what I know now, Christian should've never have passed any portion of any screens in the hospital, or any OAEs that were ever done in any office. It wasn't until we FINALLY got to Hopkins that we got any answers. It wasn't until we got to Hopkins that we were looked in the eye and finally told what we always knew--that our son was Deaf.
So here I am. It's been 2 years since Christian was born. 2 years since we had that first test in the hospital with the red note and the smiley bear. And even though it's been 2 years, I'm still FURIOUS over how everything happened (or didn't). I've learned to control my anger about Christian's actual hearing loss. I've learned to see past it. However, on days like today, when I revisit the first part of our journey with him, I get so angry. And I think I always will.
I'm prepared to possibly get another red note with a smiley bear in 2 short weeks when our daughter is born. And if we do get that red note, I'm going to cry. I'm going to be sad. Then, I'll make the calls I need to make, put our action plan in place, and make sure that we never, ever, have to go through what we went through with Christian once again.
As a parent, you want your child's life to be better and EASIER than yours. A hearing loss, no matter what level, makes a child's life hard. Then again, having a Deaf child is all I know. I don't know what life is like without pilot caps, ear molds, or topstick wig tape. I don't know what life is like without modeling language the way that I do, constantly narrating my life. I don't know what life is like without sign language. I don't know what life is like without running to the Dry-n-Store first thing in the morning to get all of the equipment ready to turn on my kid's ears. I don't know what life is like without having a Deaf child.
Just when I think I've gotten through the grief, it appears again. I'm sure my pregnancy hormones have something to do with it. When I think I've got things under control, it sneaks up on me. I guess I should just come to terms with the fact that a part of me will always be angry, and that same part of me will always be heartbroken for my sweet son who doesn't know what life is like without his magic ears.
Not because of something that happened today, yesterday, last week, or last month. Not even something that happened last year.
I was in full nesting mode this evening, clearing out my desk, making labels, and getting everything in order to prepare for our little girl's arrival. I went to go place Christian's updated audiogram from Hopkins in his medical binder, and I started flipping through the pages. This binder is our bible. It's thick, and holds every single medical record I have on file for this kid that has to do with his hearing loss. It's meticulously organized and labeled. It comes to every appointment with us. All the contents are even scanned onto an archived drive for "just in case" moments.
At first, I was glancing at how much he progressed from going unaided, to aided, to implanted. Then, I flipped through our CI candidacy section, re-reading speech-language evaluations, genetic testing results, and even the psychological evaluation.
Then, I flipped to the only tab in the binder that isn't labeled, yet I know exactly what's in there.
The first document in that section is the red note that was given to us after Christian's newborn hearing screen. You see, at our hospital if your child passes the hearing screen, you get a green note with a smiley bear, which details the OAEs that they did, and a signature. If your child "refers" (come on, just call it what it is, it's failed), you get a red note, also with a smiley bear, that details the OAEs, and which ear(s) were tested. Our red note said that we referred on the right ear, but passed on the left...and then has a note on it "Unable to acquire OAEs in right ear, due to fluid in ears from C-Section delivery".
The second document in this section is a packet of information from the first ENT's office we went to to get Christian evaluated. A note from the ENT on the front to our pediatrician says "Normal hearing per attached OAEs. Possible eustachian tube dysfunction due to fluid in ears from C-Section". Yes, this was the well-respected doctor at one of DC's largest ENT practices who looked me, the brand-new Mom, in the eye and said "Christian can hear perfectly, look at how responsive he is".
The third, fourth, and fifth documents in this section are all from our very reputable Children's Hospital, all of which show no responses on his OAE, but yet in the notes section all have varying forms of "Needs more testing, refer to X audiologist".
Now I ask myself why didn't I ask more questions? Why did they piece together OAEs and DPOAEs at this office? Why did they assume that his hearing loss was due to fluid from a C-Section delivery? Were all of these doctors in disbelief?
Why didn't ANYONE...ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn't all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn't take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN'T ANYONE HELP MY SON?
Knowing what I know now, Christian should've never have passed any portion of any screens in the hospital, or any OAEs that were ever done in any office. It wasn't until we FINALLY got to Hopkins that we got any answers. It wasn't until we got to Hopkins that we were looked in the eye and finally told what we always knew--that our son was Deaf.
So here I am. It's been 2 years since Christian was born. 2 years since we had that first test in the hospital with the red note and the smiley bear. And even though it's been 2 years, I'm still FURIOUS over how everything happened (or didn't). I've learned to control my anger about Christian's actual hearing loss. I've learned to see past it. However, on days like today, when I revisit the first part of our journey with him, I get so angry. And I think I always will.
I'm prepared to possibly get another red note with a smiley bear in 2 short weeks when our daughter is born. And if we do get that red note, I'm going to cry. I'm going to be sad. Then, I'll make the calls I need to make, put our action plan in place, and make sure that we never, ever, have to go through what we went through with Christian once again.
As a parent, you want your child's life to be better and EASIER than yours. A hearing loss, no matter what level, makes a child's life hard. Then again, having a Deaf child is all I know. I don't know what life is like without pilot caps, ear molds, or topstick wig tape. I don't know what life is like without modeling language the way that I do, constantly narrating my life. I don't know what life is like without sign language. I don't know what life is like without running to the Dry-n-Store first thing in the morning to get all of the equipment ready to turn on my kid's ears. I don't know what life is like without having a Deaf child.
Just when I think I've gotten through the grief, it appears again. I'm sure my pregnancy hormones have something to do with it. When I think I've got things under control, it sneaks up on me. I guess I should just come to terms with the fact that a part of me will always be angry, and that same part of me will always be heartbroken for my sweet son who doesn't know what life is like without his magic ears.
Thursday, July 24, 2008
Lucky.
I know that I have a million and one reasons to claim that our family is lucky. Our baby boy is healthy. We live in a beautiful home in a beautiful neighborhood. We have a wonderful family, we have fabulous friends, and we have a deep and strong faith.
This morning, Chuck and I were chatting, and I casually mentioned to him how we are hosting a playgroup of children with CIs from Christian's school that he'll be attending this fall. We both were just amazed on how lucky and fortunate we are to be able to have access to the best of the best for our little boy. We live in an area that has so many wonderful resources for our son. If we would have chose to send him to the Maryland School for the Deaf, it's 20 minutes away. Gallaudet University is across the state line in DC. One of the best CI centers in the country, is just up the road in Baltimore. Our wonderful preschool that we'll be sending Christian to has one of the most innovative oral/deaf programs in the country. Our Early Intervention program is fantastic, and we have an amazing support group of other parents of D/HOH and CI children.
I always reflect back at the beginning of my journey with Christian's hearing loss, when the days were so dark, and no matter how hard I tried, I couldn't find any hope or light. I wish I could've looked in a crystal ball at our future. I would've seen how happy and well our little boy was doing. I would've seen all the opportunities that we had access to. I would've seen that despite our challenges, we really are the luckiest.
This morning, Chuck and I were chatting, and I casually mentioned to him how we are hosting a playgroup of children with CIs from Christian's school that he'll be attending this fall. We both were just amazed on how lucky and fortunate we are to be able to have access to the best of the best for our little boy. We live in an area that has so many wonderful resources for our son. If we would have chose to send him to the Maryland School for the Deaf, it's 20 minutes away. Gallaudet University is across the state line in DC. One of the best CI centers in the country, is just up the road in Baltimore. Our wonderful preschool that we'll be sending Christian to has one of the most innovative oral/deaf programs in the country. Our Early Intervention program is fantastic, and we have an amazing support group of other parents of D/HOH and CI children.
I always reflect back at the beginning of my journey with Christian's hearing loss, when the days were so dark, and no matter how hard I tried, I couldn't find any hope or light. I wish I could've looked in a crystal ball at our future. I would've seen how happy and well our little boy was doing. I would've seen all the opportunities that we had access to. I would've seen that despite our challenges, we really are the luckiest.
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