I don't know if you can tell through our writings, but my wife and I are fairly optimistic people. We're hell bound and determined that we are going to do everything we can to give our sons a beautiful, happy and fulfilling life.
But of course with everything going on, sometimes we question our boundless optimism and wonder if it's misguided...and whether we're setting ourselves up for a big fall. When that happens, I remind myself of a habit Gommy has that involves his little tongue.
To preface, Dommy pants has been rolling all over the place and scooting forwards (army crawling). It's been fantastic to see. So now, in an effort to encourage him to move around, we'll put him on the floor and put his favorite toys (a toy remote and a toy laptop) nearby...close enough to where he can get to it, but far enough to where has to work for it.
Here's what happens when we do that. We'll hit one of the buttons so Dommy knows that it's there (it's normally out of his peripheral vision). He'll strain to look at it, and at look of recognition pops onto his face, and you can just see him thinking "oh...i'd really like to play with that". Then comes the best part. He sticks his little toungue out of the side of his mouth with fierce determination, flips over on to his belly and makes his way over.
Getting there isnt necessarily always pretty, but that little tongue...that little tongue and the look he has on his face while he's getting there is just awe inspiring. Him sticking that tongue out is basically him saying "giddy up y'all, it's time to go to work and i WILL NOT be denied"...which he never is.
This kid has grit. This kid has determination. This kid has an unyielding inner strength that's inspiring to watch. With that kind of fire in his belly, the sky is the absolute limit for my gommy.
Tuesday, September 17, 2013
Saturday, September 7, 2013
Dear Anonymous
Dear Anonymous,
I don't appreciate you. I won't say I don't like you, but I don't appreciate you.
Why did you write the things you wrote? Are you worried about my salvation? Worried that my relationship with God is not like yours? Are you so insecure in your faith, that you need everyone's faith to look the same?
When you wrote your first comment I could respect that your faith is different and led you to blame our situation on the devil; can you not accept that my faith leads me to believe that our situation is a gift of God? Why do you feel the need, even after we explained how we view our life as part of God's plan (and not an attack from the devil) to correct us, saying "we walk around ignorant... and can you not stretch your faith"? Who are you to try to take away my method of coping with this alternate lifestyle that I believe was blessed on our family?
Mahatma Gandhi said, "I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ." This quote sums up how I view your entire rant. Why do you use a message of hate to send a message of love? If you truly wanted to help, could you not have sent encouraging words, instead of correcting me to tell me that the devil created the way my beloved son is? I don't think your intent was to encourage me. I think your intent was to show how wise you are in your faith. "Preach the Gospel at all times, and if necessary, use words." That is my advice to you.
Really? Do you try to help your child with their struggles? Does that make your view of parenting any less of a blessing? And what do you know about my journey anyways?
Ok, so you just want to serve a God that would put something potentially life threatening on others children and His own? Did God not tell Abraham to kill Isaac? Do you not serve Abraham's God? Did He not sacrifice His own Son for us all? Is is so hard to believe that He would create Dominic differently for a purpose? Can you not stretch your faith to believe that?
Why would you assume that God views death as a negative? Does He not ultimately want my son with Him? Is that not all of our goals? We as christians are taught to triumph in death. No, I don't want to lose my son, but isn't that because I am left behind?
Yes, yes I would. Right now I am sending my other son to a new preschool because that is what is best for him. He does not understand why I would take him away from his beloved teacher and all his best friends, but he's growing up. It's time for him to go to school. He doesn't understand, and I am hurting him every day by pushing him to grow. Do you not put your child in time out? Does that not hurt them to teach them? So why can't God put situations in our life that aren't easy and maybe we don't understand, but are ultimately for our own good.
What the hell are you even trying to say here? That God did not create my son beautifully and wonderfully? Instead my son was created by the devil since you believe he created my son's brain structure? One of my rules of life is that if you have to say it, it's not true. There are no exceptions to this rule. For instance, if you are wearing a shirt that says sexy or princess, you are neither of those things. So, if you need to specify that you don't think my baby is bad or unwanted, you clearly do.
Who are you to say that God does not find value in my son's condition? My faith leads me to believe that my son is who he is because of God. This was God's intent for my family, not that God would stand idly by while Satan ate my son's brain. Why do you assume God sees not being able to talk or walk as a negative? Just because you do? Do you really believe that God views my son as any less perfect than your child? Why do you imply that my son has less value throughout your post? My son is every bit as good and valuable as your child, even if you do not view him that way. God clearly does not feel the need to create us all the same or He would have created us all as good looking as Dominic. Polymicrogyria translates to mean many small folds. It simply describes the shape of his brain. There are certainly symptoms associated with this brain structure, but who are you to say that fewer folds are better? Can God not choose to create someone with a brain different from your own?
Perhaps I have not accurately conveyed my concerns for my son or my own motivations. I don't care if my son does not walk or talk. I am only concerned that my son will not be able to do things he wants to do. That is why I work so hard with him now. I have no idea what he will want to do later, so I am trying to give him all the tools to do what he wants to do. If he doesn't care if he walks then neither do I. If he wants to communicate with me solely with his perfect smile, well then I'll give him one right back.
So you see, my son couldn't have been created with any help from Satan. Looking in his eyes is the closest to God I've ever been.
Love,
Twisty
I don't appreciate you. I won't say I don't like you, but I don't appreciate you.
Why did you write the things you wrote? Are you worried about my salvation? Worried that my relationship with God is not like yours? Are you so insecure in your faith, that you need everyone's faith to look the same?
When you wrote your first comment I could respect that your faith is different and led you to blame our situation on the devil; can you not accept that my faith leads me to believe that our situation is a gift of God? Why do you feel the need, even after we explained how we view our life as part of God's plan (and not an attack from the devil) to correct us, saying "we walk around ignorant... and can you not stretch your faith"? Who are you to try to take away my method of coping with this alternate lifestyle that I believe was blessed on our family?
Mahatma Gandhi said, "I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ." This quote sums up how I view your entire rant. Why do you use a message of hate to send a message of love? If you truly wanted to help, could you not have sent encouraging words, instead of correcting me to tell me that the devil created the way my beloved son is? I don't think your intent was to encourage me. I think your intent was to show how wise you are in your faith. "Preach the Gospel at all times, and if necessary, use words." That is my advice to you.
"The very fact that your family is resistant to what the Docs say is his future based on his symptoms tells me you don't accept this journey as a blessing."
Really? Do you try to help your child with their struggles? Does that make your view of parenting any less of a blessing? And what do you know about my journey anyways?
"I would not want to serve a God that put something potentially life threating on my child just to teach me something."
Ok, so you just want to serve a God that would put something potentially life threatening on others children and His own? Did God not tell Abraham to kill Isaac? Do you not serve Abraham's God? Did He not sacrifice His own Son for us all? Is is so hard to believe that He would create Dominic differently for a purpose? Can you not stretch your faith to believe that?
Why would you assume that God views death as a negative? Does He not ultimately want my son with Him? Is that not all of our goals? We as christians are taught to triumph in death. No, I don't want to lose my son, but isn't that because I am left behind?
"Would you hurt your baby to teach him? No."
Yes, yes I would. Right now I am sending my other son to a new preschool because that is what is best for him. He does not understand why I would take him away from his beloved teacher and all his best friends, but he's growing up. It's time for him to go to school. He doesn't understand, and I am hurting him every day by pushing him to grow. Do you not put your child in time out? Does that not hurt them to teach them? So why can't God put situations in our life that aren't easy and maybe we don't understand, but are ultimately for our own good.
"I am not condemning you or saying your baby is bad or unwanted but God creates everyone beautifully and wonderfully.Couldn't you stretch your faith farther to believe God wants Gommy talking, walking, running, living a long life instead of the latter?"
What the hell are you even trying to say here? That God did not create my son beautifully and wonderfully? Instead my son was created by the devil since you believe he created my son's brain structure? One of my rules of life is that if you have to say it, it's not true. There are no exceptions to this rule. For instance, if you are wearing a shirt that says sexy or princess, you are neither of those things. So, if you need to specify that you don't think my baby is bad or unwanted, you clearly do.
Who are you to say that God does not find value in my son's condition? My faith leads me to believe that my son is who he is because of God. This was God's intent for my family, not that God would stand idly by while Satan ate my son's brain. Why do you assume God sees not being able to talk or walk as a negative? Just because you do? Do you really believe that God views my son as any less perfect than your child? Why do you imply that my son has less value throughout your post? My son is every bit as good and valuable as your child, even if you do not view him that way. God clearly does not feel the need to create us all the same or He would have created us all as good looking as Dominic. Polymicrogyria translates to mean many small folds. It simply describes the shape of his brain. There are certainly symptoms associated with this brain structure, but who are you to say that fewer folds are better? Can God not choose to create someone with a brain different from your own?
Perhaps I have not accurately conveyed my concerns for my son or my own motivations. I don't care if my son does not walk or talk. I am only concerned that my son will not be able to do things he wants to do. That is why I work so hard with him now. I have no idea what he will want to do later, so I am trying to give him all the tools to do what he wants to do. If he doesn't care if he walks then neither do I. If he wants to communicate with me solely with his perfect smile, well then I'll give him one right back.
So you see, my son couldn't have been created with any help from Satan. Looking in his eyes is the closest to God I've ever been.
Love,
Twisty
Thursday, September 5, 2013
Frankincense, Gold and Myrrh
A few days ago our blog went viral. Although I started this blog to bring some type of awareness or even just humanity to our situation and others like ours, I never actually thought I would reach people on a larger scale. I guess God had other plans. I realize most people viewed our blog because they were interested in Johnny and not Dominic, but I hope that some of you will stick around and enjoy his journey with us.
Dominic is still too young for me to explain to him how, for one day, he was a celebrity in his own right, and he had the whole world (ok maybe not the whole world, but it kinda felt that way) rooting for him. But I have always said that my Gominic is extremely intelligent and off the charts socially. At this age, he should not even be ready to play next to others, but he has already started trying to play with them. He amazes me every day.
Somehow on the day that everyone was reading his story, I think he knew. I think he knew that the world was rooting for him, and I think he knew that they were watching. He started playing peek-a-boo. And I am not talking about laughing at us playing peek-a-boo; he legitimately started pulling a blanket over his face, then jerking it down quickly and laughing uncontrollably. Then he started rolling across his mat to get to toys. He would roll from back to tummy and back again. You could just tell on his face that he was practicing. Then he started trying harder to come into the sitting position from lying (it will be a long time before he has the ability to do this, but he keeps trying just the same). You could just see the extra determination on his face. Then he started taking steps in his walker (he has always had trouble moving his legs independent of each other). And no, this is not a legitimate medical walker, and maybe I am a terrible mom for ignoring all the medical warnings to not let your kid use a walker. When your kid is special needs though, you just kind of throw all advice out the window.
But I think he knew. If I could read his mind, I think that he was thinking, "Alright, you guys want a story, I'll give you a story". He knew that the world's eyes were on him and he was ready to do work.
I also found another treatment. I have realized that I am kind of a treatment-whore. I guess the first step is admitting you have a problem. Our latest thing is essential oils. Apparently the regimen for Cerebral Palsy actually involves rubbing frankincense and myrrh on your child. I figure if it was good enough for Jesus, it is good enough for Dominic. Makes me wonder if perhaps JC had some spasticity as a baby. I'd imagine it'd be pretty difficult to fit the essence of God into a little baby. I think it'd make anyone tight. Either way, he seems to enjoy the oils, and it has a pleasant tingling sensation that seems to relax his muscles.
On another note, I read that frankincense is good for wrinkles, so naturally I rubbed it on my entire face last night before bed. Poppa told me I smelled like an Indian temple. That can't be good for our marriage. So if you notice that I am looking especially young lately, its likely the frankincense. It's certainly not from the abundance of sleep I am getting.
Dominic is still too young for me to explain to him how, for one day, he was a celebrity in his own right, and he had the whole world (ok maybe not the whole world, but it kinda felt that way) rooting for him. But I have always said that my Gominic is extremely intelligent and off the charts socially. At this age, he should not even be ready to play next to others, but he has already started trying to play with them. He amazes me every day.
Somehow on the day that everyone was reading his story, I think he knew. I think he knew that the world was rooting for him, and I think he knew that they were watching. He started playing peek-a-boo. And I am not talking about laughing at us playing peek-a-boo; he legitimately started pulling a blanket over his face, then jerking it down quickly and laughing uncontrollably. Then he started rolling across his mat to get to toys. He would roll from back to tummy and back again. You could just tell on his face that he was practicing. Then he started trying harder to come into the sitting position from lying (it will be a long time before he has the ability to do this, but he keeps trying just the same). You could just see the extra determination on his face. Then he started taking steps in his walker (he has always had trouble moving his legs independent of each other). And no, this is not a legitimate medical walker, and maybe I am a terrible mom for ignoring all the medical warnings to not let your kid use a walker. When your kid is special needs though, you just kind of throw all advice out the window.
But I think he knew. If I could read his mind, I think that he was thinking, "Alright, you guys want a story, I'll give you a story". He knew that the world's eyes were on him and he was ready to do work.
I also found another treatment. I have realized that I am kind of a treatment-whore. I guess the first step is admitting you have a problem. Our latest thing is essential oils. Apparently the regimen for Cerebral Palsy actually involves rubbing frankincense and myrrh on your child. I figure if it was good enough for Jesus, it is good enough for Dominic. Makes me wonder if perhaps JC had some spasticity as a baby. I'd imagine it'd be pretty difficult to fit the essence of God into a little baby. I think it'd make anyone tight. Either way, he seems to enjoy the oils, and it has a pleasant tingling sensation that seems to relax his muscles.
On another note, I read that frankincense is good for wrinkles, so naturally I rubbed it on my entire face last night before bed. Poppa told me I smelled like an Indian temple. That can't be good for our marriage. So if you notice that I am looking especially young lately, its likely the frankincense. It's certainly not from the abundance of sleep I am getting.
Wednesday, September 4, 2013
1 year
Happy Birthday Gominic! This has been the happiest year of my life. I wouldn't trade you for anything. Here is a look back at all your awesomeness...
Tuesday, September 3, 2013
Jet Lag
Poppa here.
I see no value in thinking about the future. My method of making sense of what's going on with Gommy is to remain grounded in the here and now. The present is filled with fantastic things happening...like yesterday our sweet gommy rolled from back to belly and pushed up in to a crawling position as if it were nothing. The present is filled with lots of happiness.
The future on the other hand is filled with uncertainty, and is therefore petrifying to me. Schools, bullies, social life, family life...all that stuff is something I don't like thinking about because I have no real influence over it. So the way that I parent is by being intensely focused on this moment right here...almost to a fault.
To that end, getting over our incredibly depressing (no other way to phrase it) Seattle trip was similar to getting over jet lag. For those three hours at the clinic we were face to face with our future. We were thrust into a completely unfamiliar world...filled with concerns about saving enough money and life expectancy issues among other things. It was terrible. Beneficial, in some senses, but terrible all the same. Adjusting back to our normal life after having spent time in a completely different time zone (aka the future) was difficult, but I think we're at a good place now.
Here's the thing...were those projections based on who Gommy is, or simply based on a static image of his brain? I think the latter, which makes me quicker to not necessarily dismiss them, but take them less seriously. A picture of his brain does not properly convey how smart, capable, and driven my beautiful son is. It cannot, and it will not. So I refuse to accept a future based on one static image.
In the grand scheme of things, projections don't mean much. This past weekend I was flipping through pictures of our boys, and I found a few from well before our PMG diganosis. If I were to have made a projection based on that static image, I would have said "well this kid is happy, and giggles uncontrollably (for some reason) when i stick my nose in his mouth. He's also more social than his brother was at this age. He's a little tight, but nothing overly concerning"
That's it.
So what's changed? Maybe we know a little more about his brain and what it looks like, but we have no idea what its capable of...so why bother pretending that I can predict the future, for good or for bad? Why put myself in a different time zone when I know that I struggle with jet lag?
When Gommy flipped over and pushed up, Twisty and I were celebrating, fist bumping and wiping tears. But Gommy was going about his day as if it were nothing because NO ONE HAS TOLD HIM HE'S INCAPABLE OF DOING REMARKABLE THINGS. He's happy. He's capable. No one has told him that the future is sad or scary or anything. So if he doesn't care about the future, why the hell should I be freaking out about it? Why on earth should my ego, my fears, my doubts, and my own neuroses impact my approach to the here and now?
I'm over my jet lag. I'm done with the future. Our fam is too damn busy kicking ass in the present.
I see no value in thinking about the future. My method of making sense of what's going on with Gommy is to remain grounded in the here and now. The present is filled with fantastic things happening...like yesterday our sweet gommy rolled from back to belly and pushed up in to a crawling position as if it were nothing. The present is filled with lots of happiness.
The future on the other hand is filled with uncertainty, and is therefore petrifying to me. Schools, bullies, social life, family life...all that stuff is something I don't like thinking about because I have no real influence over it. So the way that I parent is by being intensely focused on this moment right here...almost to a fault.
To that end, getting over our incredibly depressing (no other way to phrase it) Seattle trip was similar to getting over jet lag. For those three hours at the clinic we were face to face with our future. We were thrust into a completely unfamiliar world...filled with concerns about saving enough money and life expectancy issues among other things. It was terrible. Beneficial, in some senses, but terrible all the same. Adjusting back to our normal life after having spent time in a completely different time zone (aka the future) was difficult, but I think we're at a good place now.
Here's the thing...were those projections based on who Gommy is, or simply based on a static image of his brain? I think the latter, which makes me quicker to not necessarily dismiss them, but take them less seriously. A picture of his brain does not properly convey how smart, capable, and driven my beautiful son is. It cannot, and it will not. So I refuse to accept a future based on one static image.
In the grand scheme of things, projections don't mean much. This past weekend I was flipping through pictures of our boys, and I found a few from well before our PMG diganosis. If I were to have made a projection based on that static image, I would have said "well this kid is happy, and giggles uncontrollably (for some reason) when i stick my nose in his mouth. He's also more social than his brother was at this age. He's a little tight, but nothing overly concerning"
That's it.
So what's changed? Maybe we know a little more about his brain and what it looks like, but we have no idea what its capable of...so why bother pretending that I can predict the future, for good or for bad? Why put myself in a different time zone when I know that I struggle with jet lag?
When Gommy flipped over and pushed up, Twisty and I were celebrating, fist bumping and wiping tears. But Gommy was going about his day as if it were nothing because NO ONE HAS TOLD HIM HE'S INCAPABLE OF DOING REMARKABLE THINGS. He's happy. He's capable. No one has told him that the future is sad or scary or anything. So if he doesn't care about the future, why the hell should I be freaking out about it? Why on earth should my ego, my fears, my doubts, and my own neuroses impact my approach to the here and now?
I'm over my jet lag. I'm done with the future. Our fam is too damn busy kicking ass in the present.
Subscribe to:
Posts (Atom)