Today I feel negative.
Today I was told my son may not walk.
Today we went to Seattle.
Today we saw an expert.
Today I felt excited to see him.
Today I thought he might change my world.
Today he did.
Today he told me that my son will at best be mildly mentally disabled.
Today I cried.
Today he told me that my son's microcephaly would follow the same curve and not get worse.
Even today I am vain enough to be thankful that he will retain his good looks.
Today my world was destroyed once again.
Today we got a worse diagnosis than the first.
Today I felt disbelief.
Today I choose to ignore most of what I have been told.
Today I heard someone talk about my son's life expectancy.
Today I choose to ignore him.
Today I wonder about my other son.
Today I wonder what type of a relationship he will have with his brother.
Today I wonder if I should give them another sibling.
Today I wonder what happens when I'm gone.
Today I will live forever.
Today I wonder if its all bullshit.
Today I know my Gommy.
Maybe today this doctor didn't know shit.
Today I realize I may not be the supermom I thought I was.
Today I cried.
Today Gommy skipped a nap.
Today I wonder what would have happened if he saw Gommy on a good day or a normal one.
Today I wonder if my son will be able to talk.
Today I saw kids living the future of my son. I'm just not sure which ones they were.
Today my world was crushed.
Today I feel sad.
Today I feel overwhelmed.
But today I wouldn't change Gominic for the world.
Tomorrow I start over.
Tomorrow I forget today happened.
Tomorrow I enjoy my son.
Tomorrow I'll be supermom again.
Tomorrow is different.
Tomorrow is Gommy's.
Monday, August 26, 2013
Friday, August 16, 2013
Dear Twisty
I dont know when you'll read this (and I do hope that you blog soon because you have done so much good work over the past few weeks/months that everyone needs to know about), but this note is note just to you and only you.
Too often when I try to thank you for everything that you do for your boys (myself included) it comes out as "GOMMY DO GOOD TODAY ME THANK YOU FOR ALL YOU WORK" or something else cave-manish. Rarely do I take the time to sit down and articulate just how much I love you and appreciate you for who you are.
Our life has been a love story. It started off as just the two of us, and then we included a sweet (and now feisty, tooties) and then we brought in our adorable gommy. I look at this blog as a living manifestation of that love story, which is why i try and keep it updated. It's a remarkable thing to have a repository for all of the emotions we've felt over the past 4 or so years.
But going back to that theme of the love story...your love has been the thread that has carried us through the past few months. Your love is the reason that our sweet gommy is doing what he's doing. Everyday I see you working as hard as you can to make him work as hard as he can to be everything he can and will be. Everyday I see you critically analyzing your effort to see what you can do better the next day. Everyday I see that the choices you make in life revolve around what is best for your men (myself included), and words will never be able to express how much i appreciate and admire you for that.
Admire is the right word. Your efforts are heroic, and I'm self aware enough to know that I'm incapable of doing the things that you do. Not saying that you love our sons anymore than I do--but your love empowers you in a way that I cant even fathom. Your constant drive, your constant energy, and your constant single minded focus of raising our sons to be the best they possibly can be...well...it inspires me. I'm so very lucky that you're my wife, and I'm so very lucky that you are the mother of my two beautiful boys.
Our family is perfect. And we are perfect because of you. We will be perfect because of you. Mitch Albom said, "When you look into your mother's eyes, you know that it us the purest lovve you can find on this earth". I'll take that one step further. When our sons look into your eyes, or hell when i look into your eyes I see the purest heart, and a single minded, unselfish desire to help all of us be the best we can be.
You are my heart, my soul, and my hero. I'm so very blessed to be your husband.
Love,
Poppa.
Our family is perfect. And we are perfect because of you. We will be perfect because of you. Mitch Albom said, "When you look into your mother's eyes, you know that it us the purest lovve you can find on this earth". I'll take that one step further. When our sons look into your eyes, or hell when i look into your eyes I see the purest heart, and a single minded, unselfish desire to help all of us be the best we can be.
You are my heart, my soul, and my hero. I'm so very blessed to be your husband.
Love,
Poppa.
Tuesday, August 6, 2013
One small step for man
One giant douche for mankind...
I witnessed something today. Something that was truly terrible. It was such a raw form of bigotry that left my day disrupted and left me shaking for hours in anger. I saw my old high school principal refer to special needs kids as defective on Facebook. You sir are the only defective person I see here. I do not and will not stand idly by and watch someone like my son called anything ugly. I have warned on here before that if you come at mine, I will come at you. I sent the following email to his boss and copied upper management:
Mr. So and so,
I was very disappointed to see a reference one of your employees, Blah blah blah used on a social media site refering to a special needs person as "defective". I have attached a screen shot of the incident for your reference. In the media age that we live in, it is very important for employees to maintain a professional demeanor at all times espcecially on public forums such as this.
I certainly hope this is not a tolerated way to refer to individuals who are differently abled. I find it extremely disappointing that a person in a management position would find social media an appropriate venue to discuss his hateful message. By representing himself in this manner online, he not only brings into question his own integrity but also the integrity of an employer where this public behavior can appear to be deemed tolerable.
As a mother of a special needs child, active in many support and advocacy groups, I try to send a message of hope and acceptance. Small minded, bigoted statements such as these made on public forums greatly diminish the message we are trying to send.
I thank you for your time and appreciate that you will handle this situation as you deem appropriate.
Sincerely,
Twisty Yamagucci
(Names have been changed because Twisty knows better than to spread her hate in any way but anonymously).
His post was later removed, and I feel accomplished. Gomminic, I promise you this, no hate or prejudice will go to you untouched. I will take on those bastards one bigot at a time.
I witnessed something today. Something that was truly terrible. It was such a raw form of bigotry that left my day disrupted and left me shaking for hours in anger. I saw my old high school principal refer to special needs kids as defective on Facebook. You sir are the only defective person I see here. I do not and will not stand idly by and watch someone like my son called anything ugly. I have warned on here before that if you come at mine, I will come at you. I sent the following email to his boss and copied upper management:
Mr. So and so,
I was very disappointed to see a reference one of your employees, Blah blah blah used on a social media site refering to a special needs person as "defective". I have attached a screen shot of the incident for your reference. In the media age that we live in, it is very important for employees to maintain a professional demeanor at all times espcecially on public forums such as this.
I certainly hope this is not a tolerated way to refer to individuals who are differently abled. I find it extremely disappointing that a person in a management position would find social media an appropriate venue to discuss his hateful message. By representing himself in this manner online, he not only brings into question his own integrity but also the integrity of an employer where this public behavior can appear to be deemed tolerable.
As a mother of a special needs child, active in many support and advocacy groups, I try to send a message of hope and acceptance. Small minded, bigoted statements such as these made on public forums greatly diminish the message we are trying to send.
I thank you for your time and appreciate that you will handle this situation as you deem appropriate.
Sincerely,
Twisty Yamagucci
(Names have been changed because Twisty knows better than to spread her hate in any way but anonymously).
His post was later removed, and I feel accomplished. Gomminic, I promise you this, no hate or prejudice will go to you untouched. I will take on those bastards one bigot at a time.
Monday, August 5, 2013
As long as its healthy
Today we had Dominic's appointment with the audiologist (which he passed!). I've gotten used to the terrified looks and condolences (which I typically just ignore and judge later from the comfort of my own home) when people hear about my beautiful son, but today I was hit with the unexpected. A completely. appropriate. response. You know I'm serious because I used periods between words.
Today our new audiologist who clearly had no idea what I was talking about when I told her my son has congenital CMV, despite her valiant efforts to convey otherwise, simply said to me, "my husband and I are thinking about having a baby. You never know what to expect." It wasn't her words that were spot on; it was her conveyance that she would not be horrified to be in my position. For that I thank you, Dr. W. Well done. Well done.
Today our new audiologist who clearly had no idea what I was talking about when I told her my son has congenital CMV, despite her valiant efforts to convey otherwise, simply said to me, "my husband and I are thinking about having a baby. You never know what to expect." It wasn't her words that were spot on; it was her conveyance that she would not be horrified to be in my position. For that I thank you, Dr. W. Well done. Well done.
Sunday, July 14, 2013
I got 99 problems but a flight ain't one...
Ok, maybe I don't have 99 problems, but I have been meaning to update for awhile because we have had some amazing things happening. We recently booked our flights for our trip to see Dr. Dobyns in August, and by we I mean my dad gave us a very generous gift:) Thanks, Poppi! Not only did he book our flights, but he booked us in first class for the trip there! This kid is seriously going to get so full of himself. First he has his name on a race car, now this?! I look forward to upsetting all the other passengers in first class by sitting up there with a baby. I just hope some one gives me some judgement for bringing a baby to first class. I have just been waiting to tell someone, "Oh, I'm sorry is my brain-damaged child bothering you?!" It's pretty much going to be my get out of free card for all things ever. I have already used it to get out of a crossfit membership. I am pretty sure I am actually a really terrible person:)
Back to updates, our first good news was two months ago when we had our first cognitive evaluation. At the time, Gommy had just turned 8 months old. We were having him evaluated because we had some concerns about his eating abilities (which I now think is mainly preference and stubbornness; he is my son:)) which is directly related to a child's speech prognosis. He actually tested at a 7 month level (only one month delayed)! This is very exciting. It is literally the first service we did not qualify for! Yay for getting rejected!
Since then we have continued with occupational, physical and massage (mixed with Cranial Sacral) therapy. He also sees a chiropractor and I do kinesio taping with him at home. These things have all been incredibly helpful, but recently I found a game changer. I have started doing the Anat Baniel Method with him. In one week he started sitting up (although he still needs support from his hands most of the time, and still has very little reflexes), turned pages of his favorite book using BOTH hands together, said BABABA (which is perhaps my biggest fear answered; hearing him talk has never been a certainty and we will never take his words for granted), and is able to hold himself up in the crawling position. His occupational therapist is one of my most trusted "advisors", and I can always count on her to give me good advice and not sugar coat things. She is probably the only reason we got a diagnosis as quickly as we did. In his first OT appointment after starting the AB method, she actually said she thought he did not need speech therapy for the first time ever, and he hadn't even said BABABA at that point! This may not sound huge but it truly is. I cannot wait until his appointment tomorrow so she can see him sitting up and babbling. She is not going to believe the transformation.
It's funny how our reality and my perception has changed in so many ways. It feels like ages ago that we got this diagnosis, but really its only been a few short months. I used to worry about everything. In fact, when Vincent was a baby, I was convinced he would die of SIDS. I was not scared of it, I was CONVINCED. I don't even think I enjoyed the newborn phase, I anxiously awaited until he was 8 months old and the risk dropped slightly. I did not go anywhere without his angelcare monitor. Fast forward to my sweet Gominic, I have everything in the world to worry about, but I don't know that I actually worry about any of it. One of the things that I don't talk about often is the fact that our sweet Gommy could go deaf at any time. Yes, you read that correctly. One of the side affects of congenital CMV is hearing loss up until early school age. Sometimes it blows my mind thinking about stuff like that. Our world could change completely tomorrow. I just choose not to worry about that today. Tomorrow is never guaranteed anyways.
My perspective has changed completely on so many things. I remember when I was pregnant or talking to pregnant women, I used the phrase "as long as its healthy" so many times. I never stopped to think about what that really meant. Now whenever I hear that, I can't help but smile and say that the alternative is really not that bad:) Perfect is in the eye of the beholder.
In some ways I feel like all this is God's way of evening out the playing field a little. My husband and I have long known that we have something very special. They don't make love stories like ours very often. We have always jokingly (or seriously, whatever) referred to ourselves as the modern day Cosbys. We both have successful careers, have a kick-ass relationship not to mention we are inter-racial. We have been pretty much dominating life. We actually recently started our own in home church because everyone at our last church kept trying to be friends with the interracial couple. We were not interested. Anyways, God needed to throw us a curveball, so He did. I don't know if He was anticipating that this curveball was going to make our lives that much more awesome, but it did. You know what was missing from the Cosbys? A kid with Cerebral Palsy. That's right, Bill, take that, because we no longer refer to ourselves as the Cosbys; now you should be referring to yourself as the old Singhs. Plus, have you seen how good looking Gommy is? It just wouldn't have been fair for him to get those looks and a fully formed brain.
I will say that there are still times when things are difficult for me. Today we took the boys to the playground and there was a kid a few months older than Dominic there. He was of course walking and doing all things normal things kids do. I don't think it will ever get easy to see that. At this point I am pretty insulated from other babies, but someday it won't be that way. What is funny about the situation is that I could see the parents looking at Dominic to compare their son. It has been confirmed to me through multiple sources that Gominic is truly the happiest baby of all time. He laughs constantly or shrieks at you in delight. He literally cooed at a lady taking his blood, not once but twice. He is quite the charmer. He has always been off the charts socially. I could see the family looking at him laughing on the swings and comparing their son who was not expressing the same delight. Um, dude your son can walk and will likely talk, count your blessings.
I think as parents we are all going through the same things. We may have different walks to get there, and we may even end up in completely different places, but I think there is some parallelism between our paths. Terrible person though I am :) we aren't that different you and me.
Back to updates, our first good news was two months ago when we had our first cognitive evaluation. At the time, Gommy had just turned 8 months old. We were having him evaluated because we had some concerns about his eating abilities (which I now think is mainly preference and stubbornness; he is my son:)) which is directly related to a child's speech prognosis. He actually tested at a 7 month level (only one month delayed)! This is very exciting. It is literally the first service we did not qualify for! Yay for getting rejected!
Since then we have continued with occupational, physical and massage (mixed with Cranial Sacral) therapy. He also sees a chiropractor and I do kinesio taping with him at home. These things have all been incredibly helpful, but recently I found a game changer. I have started doing the Anat Baniel Method with him. In one week he started sitting up (although he still needs support from his hands most of the time, and still has very little reflexes), turned pages of his favorite book using BOTH hands together, said BABABA (which is perhaps my biggest fear answered; hearing him talk has never been a certainty and we will never take his words for granted), and is able to hold himself up in the crawling position. His occupational therapist is one of my most trusted "advisors", and I can always count on her to give me good advice and not sugar coat things. She is probably the only reason we got a diagnosis as quickly as we did. In his first OT appointment after starting the AB method, she actually said she thought he did not need speech therapy for the first time ever, and he hadn't even said BABABA at that point! This may not sound huge but it truly is. I cannot wait until his appointment tomorrow so she can see him sitting up and babbling. She is not going to believe the transformation.
It's funny how our reality and my perception has changed in so many ways. It feels like ages ago that we got this diagnosis, but really its only been a few short months. I used to worry about everything. In fact, when Vincent was a baby, I was convinced he would die of SIDS. I was not scared of it, I was CONVINCED. I don't even think I enjoyed the newborn phase, I anxiously awaited until he was 8 months old and the risk dropped slightly. I did not go anywhere without his angelcare monitor. Fast forward to my sweet Gominic, I have everything in the world to worry about, but I don't know that I actually worry about any of it. One of the things that I don't talk about often is the fact that our sweet Gommy could go deaf at any time. Yes, you read that correctly. One of the side affects of congenital CMV is hearing loss up until early school age. Sometimes it blows my mind thinking about stuff like that. Our world could change completely tomorrow. I just choose not to worry about that today. Tomorrow is never guaranteed anyways.
My perspective has changed completely on so many things. I remember when I was pregnant or talking to pregnant women, I used the phrase "as long as its healthy" so many times. I never stopped to think about what that really meant. Now whenever I hear that, I can't help but smile and say that the alternative is really not that bad:) Perfect is in the eye of the beholder.
In some ways I feel like all this is God's way of evening out the playing field a little. My husband and I have long known that we have something very special. They don't make love stories like ours very often. We have always jokingly (or seriously, whatever) referred to ourselves as the modern day Cosbys. We both have successful careers, have a kick-ass relationship not to mention we are inter-racial. We have been pretty much dominating life. We actually recently started our own in home church because everyone at our last church kept trying to be friends with the interracial couple. We were not interested. Anyways, God needed to throw us a curveball, so He did. I don't know if He was anticipating that this curveball was going to make our lives that much more awesome, but it did. You know what was missing from the Cosbys? A kid with Cerebral Palsy. That's right, Bill, take that, because we no longer refer to ourselves as the Cosbys; now you should be referring to yourself as the old Singhs. Plus, have you seen how good looking Gommy is? It just wouldn't have been fair for him to get those looks and a fully formed brain.
I will say that there are still times when things are difficult for me. Today we took the boys to the playground and there was a kid a few months older than Dominic there. He was of course walking and doing all things normal things kids do. I don't think it will ever get easy to see that. At this point I am pretty insulated from other babies, but someday it won't be that way. What is funny about the situation is that I could see the parents looking at Dominic to compare their son. It has been confirmed to me through multiple sources that Gominic is truly the happiest baby of all time. He laughs constantly or shrieks at you in delight. He literally cooed at a lady taking his blood, not once but twice. He is quite the charmer. He has always been off the charts socially. I could see the family looking at him laughing on the swings and comparing their son who was not expressing the same delight. Um, dude your son can walk and will likely talk, count your blessings.
I think as parents we are all going through the same things. We may have different walks to get there, and we may even end up in completely different places, but I think there is some parallelism between our paths. Terrible person though I am :) we aren't that different you and me.
Thursday, June 27, 2013
Seeing beyond what is...To what could be
I teach a leadership course, and one of the definitions of a vision that we provide is the art of "seeing beyond what is, to what could be". Additionally, i teach about a skills assessment called "strengthsquest"...and one of the primary tenets of that program is that attempting to only fix your weaknesses leads to failure prevention. building on your strengths leads to success.
I know that the majority of folks who read this blog are family and friends...but if there are any folks out there with kids with CP, please watch the video below. On first watch i found it mind blowing. on second watch, i found it inspiring and incredibly motivational. the video is a tedtalk from Dr. Karen Pape. she discusses the concept of "neuroplasticity" with brain damaged children:
I took notes during the second round of watching this video in an attempt to summarize the content, but i realize now that summarizing would be impossible...so instead i'm just going to share the bullets that i took away:
I know that the majority of folks who read this blog are family and friends...but if there are any folks out there with kids with CP, please watch the video below. On first watch i found it mind blowing. on second watch, i found it inspiring and incredibly motivational. the video is a tedtalk from Dr. Karen Pape. she discusses the concept of "neuroplasticity" with brain damaged children:
I took notes during the second round of watching this video in an attempt to summarize the content, but i realize now that summarizing would be impossible...so instead i'm just going to share the bullets that i took away:
- Our expectations determine perception and our perception determines the way that we work with our kids
- Doctors are trained to look for problems, and to an extent that's what we, as CP parents, do as well.
- Instead of looking at correcting inabilities, we need to look at our children as elite athletes. We need to be coaches. Doctors look for problems. Coaches look for possibilities (chew on that one for a second).
- When an adult has a mild stroke we expect them to fully recover. When a child has a stroke (either at an early age or in utero) we think that there is no possibility for "recovery" only "rehabilitation"
- Kids can learn lower level skills (like walking) when their brain is still in the process of recovery...and over time that lack of ability to do something (like walk) becomes a habit. It's not that they CANT do it, it's just that they've practiced the same habits over and over again.
- We cant change habits by working the habit. Encouraging a kid who walks badly to walk more teaches them only how to walk badly better.
- So how do we reframe teaching? How do we look at our kids in terms of potential instead of correction?
The notion of coaching vs. doctoring resonates with me. Dr. Pape shared an example of a child with hemiplegia who she expected to have issues walking...and sure the kid had some issues walking...but he could run like the wind...because NO ONE TOLD HIM THAT HE WOULDNT BE ABLE TO RUN!
Absolutely fascinating. I've often said that we have no idea the amazing things that Gommy's brain is capable of and this video further reinforces it. I have to figure out just what "not training him to do bad better" means to me, but we'll figure it out.
Last thing...the wife and I have a severe lack of patience in general. We're not really folks who like to wait. And I think that part of that personality trait of ours has translated into how we work with our kids...we see something that we think could help either one of our kids, and we think "well, why shouldnt we get it now?!?!" and immediately go out and buy it.
In exploring that feeling a little bit deeper, and in discussing it with twisty, I think I've determined that having a special needs kid has led to a irrational and unnecessary sense of urgency, almost a twisted butterfly effect. We think that doing something now, meaning RIGHT NOW, could benefit him in 5 years...and the converse is true as well...not doing something right now could negatively impact him in 5 years. So of course the answer is to do it RIGHT NOW. And from reading this blog, I think you know how determined we are to do everything we can.
But in truth that needs to be checked a little bit. There certainly is some truth to the notion of wanting to do everything we can to teach and love on our two little men...but that sense of urgency is often fueled more by fear and almost a manic desire to make sure we're parenting as hard as we can, instead of a rational sense of what today means in terms of the future (if that makes sense). It's good to be determined. I'm not sure that it's good to be impatient, so we're working on balancing the two out.
Monday, June 10, 2013
irrrational musings
this post is irrational and i know it. so bear with me.
we went to the doctor this weekend for gommy's 9 month appointment, and he's doing extremely well. he's following his growth charts (for the most part), and has taken the slightest dip in head size.
his brother had a huge melon. gommy's was well with a normal range, but on the small size. i remember when he was born thinking that he 1) looked small and 2) looked proportional...which is different because babies normally have an orange on a toothpick for a head. but again, it was well within the normal range. the doctors didnt mention anything about it, and it didnt really register as a red flag in my mind...just one that i kind of went "huh" and moved on with.
a part of PMG is microcephaly, meaning smaller sized heads. rationally, gommy does not meet the criteria to be considered microcephalic. rationally, it's possible that his head charts are going to be off because of his time in his cranial band. rationally, there is nothing to even pay even the remotest amount of attention to in this situation.
irrationally, i should have known. i should have taken the next step in logic when i thought he looked "proportional". irrationally i should have had some sort of fatherly spidey sense that something was going on.
back to rationally discussing my irrational concerns. could we have done anything? no. the damage had been done. he's doing extraordinarily well...to the point where every doctor that we see is almost shocked about how interactive he is, and how physically active he is--and not just for a kid with CP--in general. Gommy is doing great.
but irrationally again...there are moments where i feel an extraordinary amount of pressure as a parent...which is not a bad thing really because parenting should be a huge responsibility. and the pressure doesnt manifest as a burden by any stroke of the imagination, but it feels like in order for gommy to be the best he can be, i need to be the best i can be for him at all times. and not noticing...rather not giving creedence to the thought i had about his head being proportional makes me feel like i let him down in some odd strange sick way.
and i know i didnt. i know that. but the irrational part of me hasnt stopped thinking about it since our doctor's appointment.
we went to the doctor this weekend for gommy's 9 month appointment, and he's doing extremely well. he's following his growth charts (for the most part), and has taken the slightest dip in head size.
his brother had a huge melon. gommy's was well with a normal range, but on the small size. i remember when he was born thinking that he 1) looked small and 2) looked proportional...which is different because babies normally have an orange on a toothpick for a head. but again, it was well within the normal range. the doctors didnt mention anything about it, and it didnt really register as a red flag in my mind...just one that i kind of went "huh" and moved on with.
a part of PMG is microcephaly, meaning smaller sized heads. rationally, gommy does not meet the criteria to be considered microcephalic. rationally, it's possible that his head charts are going to be off because of his time in his cranial band. rationally, there is nothing to even pay even the remotest amount of attention to in this situation.
irrationally, i should have known. i should have taken the next step in logic when i thought he looked "proportional". irrationally i should have had some sort of fatherly spidey sense that something was going on.
back to rationally discussing my irrational concerns. could we have done anything? no. the damage had been done. he's doing extraordinarily well...to the point where every doctor that we see is almost shocked about how interactive he is, and how physically active he is--and not just for a kid with CP--in general. Gommy is doing great.
but irrationally again...there are moments where i feel an extraordinary amount of pressure as a parent...which is not a bad thing really because parenting should be a huge responsibility. and the pressure doesnt manifest as a burden by any stroke of the imagination, but it feels like in order for gommy to be the best he can be, i need to be the best i can be for him at all times. and not noticing...rather not giving creedence to the thought i had about his head being proportional makes me feel like i let him down in some odd strange sick way.
and i know i didnt. i know that. but the irrational part of me hasnt stopped thinking about it since our doctor's appointment.
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