Thursday, July 7, 2011
Tuesday, July 5, 2011
Guest Blogger
Okay, this isn't really a guest blog. That would imply I asked Rachel if I could log in as her and post to our family blog. This is more of a hijacking because hey, why should she have all the fun, right? Before you judge me for logging into someone else's account, let me say that I hijacked the blog tonight to brag on my lovely wife and three great kids.
EG, Isaac and I just got back home from New Jersey tonight after our 11 day journey to the north. I'm not going to lie, it is really rough to watch your kid have to be completely retaught how to eat. Eating is something I do a lot of and just take for granted. Think about telling someone, "This is how you open your mouth. This is where your tongue goes. This is how you chew. Its okay to have a little food on your fingers and face. Its okay if your shoe straps aren't perfectly aligned while you practice the seemingly simple procedures of eating." It boggles the mind to think that every bite of every feeding for at least the next six months has to be calculated and controlled until Owen's muscles and brain are reformatted to eat normally. But then you sit across the table at breakfast this morning and watch this litte mouth doing everything it is supposed to do all on its own. Owen has always loved corn chex because he doesn't have to chew them, they dissolve in his mouth. Three weeks ago, that's how he would eat them. I was so proud of him this morning because he was chewing his food like a pro. That may not seem like a lot but it was pretty awesome in my book. Owen, I just want to thank you for fighting so hard this month to work with the doctors, for being patient with me while I learned how to feed you the right way and for all the hugs, kisses, nuggles, and laughs you shared with me in New Jersey. I miss you more than you can imagine!
I think what was even harder than realizing the depth of Owen's needs was knowing that your wife had been carrying the full weight of them for the last two plus years virtually single handedly. Whether its right or wrong, with three kids it has kind of been a divide and conquer setup and Rachel has been carrying the lion's share of Owen's heavy load. I know I am partial but I don't know another person more dedicated to their family than my wife. Rachel, I know you would take a bullet for any one of us without even hesitating. Thank you for sacrificing so much of your life for us and helping me better understand the definition of 'love' found in 1 John 3:16-18. You are the perfect wife and mother for our family. As a husband, Ephesians 5:25 is a challenging verse but you make it joyful for me. Thanks for sticking with us through this crazy ride and for all the laughter along the way. I guess what I want to say is, thanks for all the crazy moments like this:
Anyways, Emma Grace and Isaac have been quite the troopers over the last month or so too. It can't be easy having your mom and brother leave for 5 weeks, then get shipped all over the place so dad can still get in time to work, drive 10 hours in the car in one day twice, be away from home more than you are there and share a bed every night, but they did it. Emma Grace and Isaac, you two keep growing tighter every day and I am more proud than you can imagine to call both of you my kids. Thanks for putting up with the shortage of food, generally messy house and less than organized schedule since your mom has been gone. Here are some highlights from our journey.
EG, Isaac and I just got back home from New Jersey tonight after our 11 day journey to the north. I'm not going to lie, it is really rough to watch your kid have to be completely retaught how to eat. Eating is something I do a lot of and just take for granted. Think about telling someone, "This is how you open your mouth. This is where your tongue goes. This is how you chew. Its okay to have a little food on your fingers and face. Its okay if your shoe straps aren't perfectly aligned while you practice the seemingly simple procedures of eating." It boggles the mind to think that every bite of every feeding for at least the next six months has to be calculated and controlled until Owen's muscles and brain are reformatted to eat normally. But then you sit across the table at breakfast this morning and watch this litte mouth doing everything it is supposed to do all on its own. Owen has always loved corn chex because he doesn't have to chew them, they dissolve in his mouth. Three weeks ago, that's how he would eat them. I was so proud of him this morning because he was chewing his food like a pro. That may not seem like a lot but it was pretty awesome in my book. Owen, I just want to thank you for fighting so hard this month to work with the doctors, for being patient with me while I learned how to feed you the right way and for all the hugs, kisses, nuggles, and laughs you shared with me in New Jersey. I miss you more than you can imagine!
I think what was even harder than realizing the depth of Owen's needs was knowing that your wife had been carrying the full weight of them for the last two plus years virtually single handedly. Whether its right or wrong, with three kids it has kind of been a divide and conquer setup and Rachel has been carrying the lion's share of Owen's heavy load. I know I am partial but I don't know another person more dedicated to their family than my wife. Rachel, I know you would take a bullet for any one of us without even hesitating. Thank you for sacrificing so much of your life for us and helping me better understand the definition of 'love' found in 1 John 3:16-18. You are the perfect wife and mother for our family. As a husband, Ephesians 5:25 is a challenging verse but you make it joyful for me. Thanks for sticking with us through this crazy ride and for all the laughter along the way. I guess what I want to say is, thanks for all the crazy moments like this:
and this...
and this...
Apparently we need to do more than just hang out in Target and mess with carts and glasses...
Anyways, Emma Grace and Isaac have been quite the troopers over the last month or so too. It can't be easy having your mom and brother leave for 5 weeks, then get shipped all over the place so dad can still get in time to work, drive 10 hours in the car in one day twice, be away from home more than you are there and share a bed every night, but they did it. Emma Grace and Isaac, you two keep growing tighter every day and I am more proud than you can imagine to call both of you my kids. Thanks for putting up with the shortage of food, generally messy house and less than organized schedule since your mom has been gone. Here are some highlights from our journey.
Seeing the Statue of Liberty
(Sorry for the bad pic, its the best I had)
In front of "Eloise's House"
(Note the flag EG is pointing to. Not sure what Isaac is doing?)
Posing in front of a life sized Bumble Bee statue in Time Square
Riding a train to Weehawken NJ to watch the fireworks with Chips
Playing veterinarian at Marbles before Mom leaves
Getting home and realizing that your fish can survive 3 weeks without food
(Don't judge me. Rachel always feeds them. I forgot we had fish to feed.)
and my favorite, figuring out how to have fun with a few random bags from Subway
Life has its ups and downs but how can you complain when you are blessed with a family like this. I love you Rachel, EG, I & O!
[POSTED BY TODD...]
This, That, and the Other....
Todd and the kids took off this morning.
Luckily his parents were still here tonight to cushion the blow
when Owen got back from the hospital and his brother and sister were gone.
We had some rough feedings today,
but you know, what kid does like broccoli?
Watching The Office right now.
This show makes me laugh.
I'm scared to come home and step on a scale.
Seriously.
Apparently I am not at the age anymore where I can stop exercising, eat huge and fattening meals three times a day, and not gain any weight.
I miss being that age.
We hit Lake Packanack again on Saturday.
I played and played and played with the kids sat on the side and watched Todd win the Father of the Year Award.
I did take pictures though.
That counts for something, right?
Three days to go.
Woot Woot.
Saturday, July 2, 2011
Going Home
Owen will be discharged next Friday after four weeks here.
We're excited about going home and scared about doing all this on our own.
It's bittersweet. While it has been hard being here and away from everybody, being surrounded by specialists who are watching him closely and answering questions the second you have them has been quite nice. (It's kind of like being nervous leaving the hospital with your newborn....)
I offered to set up a clinic in our house for them, but apparently they don't think insurance will cover that.
It's also like having a newborn again because he has to eat every 3 hours and Todd and I are the only ones who are trained to feed him. Yowza. There goes our dating life..... Not that we had much of one anyways.
While Todd was at the hospital the past few days getting trained in the art of feeding Owen, the bigs and I had a blast swimming. We even borrowed passes to a lake and my skin was like "vitamin D? What the heck?"
They made some new friends and once we're done with laundry and laziness today, we may head back over there. The hotel will clean your bathrooms and kitchen and make your bed, but apparently they draw the line at washing your dirty undies. I don't get it....
After Owen's dinner, we went out to eat and to watch the fireworks last night.
(No, his feet are not one of his new foods. He just likes to smell them. Don't we all?)
Happy Holiday Weekend!
Thursday, June 30, 2011
To publish or not to publish
That is the question.
I've been sitting on this post for awhile now, mulling it over in my brain and trying to figure out exactly what I want to say. I've been ashamed that I don't want to publish it and then ashamed that I'm ashamed. There is absolutely no shame in what I'm about to say; yet I'm afraid. I'm afraid to take this leap into a new realm of parenting. In fact, it doesn't feel like leaping. It feels like the rug has been pulled out from under me and instead of leaping, I'm free falling and don't know where my feet will land.
If you know anything about the medical field, you may have already deduced from previous posts, that we are entering the world of special needs. We've been traveling the world of special health needs for two years and that was and is a hard enough journey. And we came up here thinking we were reaching the end of the road. We came up here thinking this is going to be hard as crap, but when we get home, all the doctor appointments will slow down. Well.....not exactly. Fears that were slowly starting to creep into our brains were confirmed last Wednesday. A day that I never hope to relive. I was called back into an unexpected meeting with social workers and a family counselor. After watching Owen and working with him, they think his developmental delays are not just a result of his health issues. They threw a lot of information at me, and I sat there by myself and kept waiting for the punch line. Then I kept waiting to wake up. Then I realized that this was neither a joke nor a dream and I kept waiting for the tears to stop. They didn't stop until around 4:30 that afternoon and then I think they only stopped because there were none left and my eyes were pretty much swollen shut. It was really pretty. They even kicked me out of the hospital to go for a run while Owen napped and I was hunched over on the treadmill holding my stomach and crying while running. Yes - I got some strange looks but at least I burned a few calories.
They told me about the four stages we will go through.
1. Mourning: grieving the loss of the typical.
2. Storming: Researching and learning as much as possible.
3. Performing: Putting together the best team of docs and specialists for your little one.
4. Norming: Accepting that this is your new life and it will be okay.
And it will be okay.
I thought I was moving past grief.
Last night I sat in the aisle of Barnes and Noble and looked at books hoping for comfort and direction and hope. My hands slowly crept back over my stomach as I hunched over and nosedived from storming back to grief. I suppose that's to be expected. Because while the books did have some helpful information; they also had a lot of statistics and scary stories. And I had to pick myself up off the floor and pray to God to remind me that Owen is not a statistic. Owen is not a scary story. He is my son. More importantly, he is God's son and he is exactly who God created him to be. He is a sweetheart who just happens to be wired a little bit differently than the typical child.
We don't yet know the extent of his needs and we won't know until we get a full evaluation from a geneticist and a neural developmental specialist. (Do I still hope somewhere deep down that they'll say these delays are a result of his health needs and lack of proper nutrition? Heck yeah. But I'm also trying to face the reality that there is probably more to this.) We do know that he needs services and interventions more than he needs a label. We do know that we've been told by doctors here and in Raleigh to start researching special needs preschools. We do know that he needs to go five days a week next year. So while I was already sad about sending one boy away to kindergarten; now all three children will be in school next year and I'm not quite ready for that. We do know that we have a lot to learn and so the journey has begun. The research has begun. Trying to learn the many many acronyms that go along with this type of diagnosis has begun. (That in itself is a full time job. Is it really that hard just to say the words?) It's like learning a foreign language while visiting a foreign country. And one that you never really wanted to take a trip to in the first place.
So if there is still so much unknown, why am I writing about this?
For myself.
It's that simple.
I'm practicing saying the words over and over. Special Needs. Therapies. Early Intervention. Special Education. Developmental Delays. Cognitive Delays. Speech Delays. Feeding Delays. Low Tone. More specialists. Sensory Disorders. Pervasive Developmental Disorders, Geneticists, Etc, etc, etc.
What do I hope to gain by saying these things and telling people these things?
I hope to claw my way out of mourning and into storming.
I hope to sprint to the finish line of Norming. I'm ready to get there. I've never wanted to accept something more in my life. I want to move past the fears and the doubts and the unknowns of the future back into the world of trusting God that my little man is going to be okay - that our family is going to be okay. That this will give Emma Grace and Isaac an empathy for others that they may not have had otherwise. I'm ready to start learning the lessons we're meant to learn and to be able to say these words and acronyms without flinching. I'm ready to advocate for my son and provide him with the best possible future. The future that God already has planned for him.
"For I know the plans I have for you," declares the Lord,
"plans to prosper and not to harm you,
plans to give you hope and a future."
Jeremiah 29:11
God knows His plans for my son.
And that is the biggest comfort of all.
If you know anything about the medical field, you may have already deduced from previous posts, that we are entering the world of special needs. We've been traveling the world of special health needs for two years and that was and is a hard enough journey. And we came up here thinking we were reaching the end of the road. We came up here thinking this is going to be hard as crap, but when we get home, all the doctor appointments will slow down. Well.....not exactly. Fears that were slowly starting to creep into our brains were confirmed last Wednesday. A day that I never hope to relive. I was called back into an unexpected meeting with social workers and a family counselor. After watching Owen and working with him, they think his developmental delays are not just a result of his health issues. They threw a lot of information at me, and I sat there by myself and kept waiting for the punch line. Then I kept waiting to wake up. Then I realized that this was neither a joke nor a dream and I kept waiting for the tears to stop. They didn't stop until around 4:30 that afternoon and then I think they only stopped because there were none left and my eyes were pretty much swollen shut. It was really pretty. They even kicked me out of the hospital to go for a run while Owen napped and I was hunched over on the treadmill holding my stomach and crying while running. Yes - I got some strange looks but at least I burned a few calories.
They told me about the four stages we will go through.
1. Mourning: grieving the loss of the typical.
2. Storming: Researching and learning as much as possible.
3. Performing: Putting together the best team of docs and specialists for your little one.
4. Norming: Accepting that this is your new life and it will be okay.
And it will be okay.
I thought I was moving past grief.
Last night I sat in the aisle of Barnes and Noble and looked at books hoping for comfort and direction and hope. My hands slowly crept back over my stomach as I hunched over and nosedived from storming back to grief. I suppose that's to be expected. Because while the books did have some helpful information; they also had a lot of statistics and scary stories. And I had to pick myself up off the floor and pray to God to remind me that Owen is not a statistic. Owen is not a scary story. He is my son. More importantly, he is God's son and he is exactly who God created him to be. He is a sweetheart who just happens to be wired a little bit differently than the typical child.
We don't yet know the extent of his needs and we won't know until we get a full evaluation from a geneticist and a neural developmental specialist. (Do I still hope somewhere deep down that they'll say these delays are a result of his health needs and lack of proper nutrition? Heck yeah. But I'm also trying to face the reality that there is probably more to this.) We do know that he needs services and interventions more than he needs a label. We do know that we've been told by doctors here and in Raleigh to start researching special needs preschools. We do know that he needs to go five days a week next year. So while I was already sad about sending one boy away to kindergarten; now all three children will be in school next year and I'm not quite ready for that. We do know that we have a lot to learn and so the journey has begun. The research has begun. Trying to learn the many many acronyms that go along with this type of diagnosis has begun. (That in itself is a full time job. Is it really that hard just to say the words?) It's like learning a foreign language while visiting a foreign country. And one that you never really wanted to take a trip to in the first place.
So if there is still so much unknown, why am I writing about this?
For myself.
It's that simple.
I'm practicing saying the words over and over. Special Needs. Therapies. Early Intervention. Special Education. Developmental Delays. Cognitive Delays. Speech Delays. Feeding Delays. Low Tone. More specialists. Sensory Disorders. Pervasive Developmental Disorders, Geneticists, Etc, etc, etc.
What do I hope to gain by saying these things and telling people these things?
I hope to claw my way out of mourning and into storming.
I hope to sprint to the finish line of Norming. I'm ready to get there. I've never wanted to accept something more in my life. I want to move past the fears and the doubts and the unknowns of the future back into the world of trusting God that my little man is going to be okay - that our family is going to be okay. That this will give Emma Grace and Isaac an empathy for others that they may not have had otherwise. I'm ready to start learning the lessons we're meant to learn and to be able to say these words and acronyms without flinching. I'm ready to advocate for my son and provide him with the best possible future. The future that God already has planned for him.
"For I know the plans I have for you," declares the Lord,
"plans to prosper and not to harm you,
plans to give you hope and a future."
Jeremiah 29:11
God knows His plans for my son.
And that is the biggest comfort of all.
Tuesday, June 28, 2011
On our Way to that Burger!
He did not eat a hamburger today.
But he did eat two small bites of hamburger meat.
Can I get a woot-woot?!
My boy is making some serious progress.
He's completely off baby food.
It's all about pureed table foods and even some chewables.
After 2 and 1/2 years, Owen is off baby foods.
That's worth some celebrating.
God is so good.
And in other news?
The bigs and Todd are still here and still making us smile.
And we sent Owen out to wake them up this morning and this is what we found:
And this may be the reason it took the diva a little bit longer to wake up than the boys:
Comfy, Isaac?
Donnie and Cinda are here spoiling us rotten right now.
They treated us to dinner last night, and today, Todd and Donnie took Emma Grace, Isaac, and Abby into New York City while Cinda went above and beyond the call of duty and helped me pin Owen down during some allergy testing. (Which came back negative by the way. Yay.) Cinda and I got to go meet another friend for dinner tonight and the time away from everything to laugh with good friends was just what I needed.
So to sum up, life in New Jersey continues.
Tomorrow is our half way point.
And even though I'm sure there will be more rough days ahead,
I'm so thankful for the day that was today.
I'm so thankful for the hamburger meat eating, no more allergen testing, and 25 pound weight victories of today.
Sunday, June 26, 2011
Best Surprise Ever!!
Owen and I were just heading out for a run yesterday afternoon when we saw a car that looked really familiar.
Hello Family!
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