I cannot tell you how amazingly brave and strong my sweet 4 year old is. I was listening to a song tonight that about sums up my feelings.
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son
The feelings I have had this week have been a HUGE roller coaster as they always are around the times we have any kind of procedure. I half laugh because jokingly said " it isn't brain surgery" and we have HAD brain surgery ( a lot) yet it still makes my insides and my anxiety kick into gear. The feelings of helplessness, defeat, and for me a lot of guilt get thrown in as I watch him go through ONE more thing and know that it isn't the end.
The morning went really smooth considering our early wake up. Ty was actually still asleep when we were ready to go. Which is GREAT and helped with the no eating issue.
The roads were pretty good as well until we got into downtown but we made it just in time to check in.
Ty was a pretty happy camper and we got him all set up to watch a movie and get ready for the paperwork to come. When we got there and they were ready to put a hospital bracelet on he FREAKED until we gave one to his Barney.
Shriner's has a bag of stuff ready for all the kids on their bed and the puppy was in it. He was in love. The kid currently has a zoo with all the stuff they have given him this last week. So he is all ready with Barney and his puppy watching a movie.
When we asked them to put a bracelet on Barney they even wrote his name. ( man I should be a child life specialist cause I had all the answers for my kid... OH WAIT... I am)
The vitals are pretty tough for Tyler as well. He cries when they do them. I have no idea why, but again I got the bright idea to have Barney's done and Ty complied when me and Ty did Tyler's where they needed the stethoscope. It was kinda nice to not have him cry. ( yet)
The docs were taking forever ( not uncommon in a specialist hospital or appointments) so me and Ty went on a wagon ride, all over the top floor of the fun hospital. Seriously. Shriner's is a pretty happy place.
As we headed back we started consents and talking to Dr. Gooch and the surgical team. And then came the waiting.
They gave Ty Versed. It has never worked before but man did it work this time. He was so freaking funny. I would sing him songs and he would laugh and laugh. He was "telling" his dad he was a penguin and patting his dad on the tummy. It was funny. This is the hardest part of the day knowing they are taking away my baby. It NEVER gets easier. But we laid him in the bed and off he went. NOT A PEEP.. and I didn't cry because I knew he was not missing me ( that I heard!)
We ran down and got some breakfast while Ty was gone and headed back to the room.
A tid bit about Shriner's. Most of it is run on donations and from the local Shrine. They don't take credit/debit cards there at the Cafeteria. ( I didn't know) and they handed me the receipt and said oh well. That is what we are for. Seriously. So when we went today I remember a check book and was able to "donate" back.
We got back to the room and Ty was on his way soon. It seemed everything went well. We didn't get to see Dr. Gooch but saw all the rest of the team and have all of our therapies lined up and appointments for the next 2 months to see how this goes.
Anesthesia is kind of a a beast for Tyler. For and hour and a half he screamed. And yes I look mean and fed up but we did that for an hour and a half. I was blocking it out... BLOCKING... and I have bruises.
When we finally got him settled we were able to take him home. But before we did I asked the Lady to please give Barney casts and so she did. Barney had casts and was ready to go with us. Tonight Tyler wouldn't play with Barney unless they were off but he was pretty content having the same things as Barney.
Tonight was sponge bath and meds time and he was pretty tired. The next few photos are not GREAT but shows what we are looking at for his feet.
So the verdict on the feet and why we are doing this.
Because he is totally dependant on me at this point I know I could use a few adults to converse with so I don't lose my sanity. I normally wouldn't' ask but I am asking for the help from friends and family at this time. Please come and help us out. I promise the favor will be returned.
And the moral of my story:
I love Tyler. I feel I have given up every part of who I "was" and was "going to be" in order to be his mom. More so by going to the therapy, advocating really loudly sometimes and losing "friends" in the process. I needed my son to have the best possible outcome for his sake. I will continue to do that, even it it does step on toes.
I love him more than anything.
The words of my song as I beg my Father in Heaven
Can you hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
I will and would take his place in a heartbeat.
T you are MY bravest of Heroes
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son
The feelings I have had this week have been a HUGE roller coaster as they always are around the times we have any kind of procedure. I half laugh because jokingly said " it isn't brain surgery" and we have HAD brain surgery ( a lot) yet it still makes my insides and my anxiety kick into gear. The feelings of helplessness, defeat, and for me a lot of guilt get thrown in as I watch him go through ONE more thing and know that it isn't the end.
The morning went really smooth considering our early wake up. Ty was actually still asleep when we were ready to go. Which is GREAT and helped with the no eating issue.
The roads were pretty good as well until we got into downtown but we made it just in time to check in.
Ty was a pretty happy camper and we got him all set up to watch a movie and get ready for the paperwork to come. When we got there and they were ready to put a hospital bracelet on he FREAKED until we gave one to his Barney.
Shriner's has a bag of stuff ready for all the kids on their bed and the puppy was in it. He was in love. The kid currently has a zoo with all the stuff they have given him this last week. So he is all ready with Barney and his puppy watching a movie.When we asked them to put a bracelet on Barney they even wrote his name. ( man I should be a child life specialist cause I had all the answers for my kid... OH WAIT... I am)The vitals are pretty tough for Tyler as well. He cries when they do them. I have no idea why, but again I got the bright idea to have Barney's done and Ty complied when me and Ty did Tyler's where they needed the stethoscope. It was kinda nice to not have him cry. ( yet)
The docs were taking forever ( not uncommon in a specialist hospital or appointments) so me and Ty went on a wagon ride, all over the top floor of the fun hospital. Seriously. Shriner's is a pretty happy place.
As we headed back we started consents and talking to Dr. Gooch and the surgical team. And then came the waiting.
They gave Ty Versed. It has never worked before but man did it work this time. He was so freaking funny. I would sing him songs and he would laugh and laugh. He was "telling" his dad he was a penguin and patting his dad on the tummy. It was funny. This is the hardest part of the day knowing they are taking away my baby. It NEVER gets easier. But we laid him in the bed and off he went. NOT A PEEP.. and I didn't cry because I knew he was not missing me ( that I heard!)
We ran down and got some breakfast while Ty was gone and headed back to the room.
A tid bit about Shriner's. Most of it is run on donations and from the local Shrine. They don't take credit/debit cards there at the Cafeteria. ( I didn't know) and they handed me the receipt and said oh well. That is what we are for. Seriously. So when we went today I remember a check book and was able to "donate" back.
We got back to the room and Ty was on his way soon. It seemed everything went well. We didn't get to see Dr. Gooch but saw all the rest of the team and have all of our therapies lined up and appointments for the next 2 months to see how this goes.
Anesthesia is kind of a a beast for Tyler. For and hour and a half he screamed. And yes I look mean and fed up but we did that for an hour and a half. I was blocking it out... BLOCKING... and I have bruises.
When we finally got him settled we were able to take him home. But before we did I asked the Lady to please give Barney casts and so she did. Barney had casts and was ready to go with us. Tonight Tyler wouldn't play with Barney unless they were off but he was pretty content having the same things as Barney.
Tonight was sponge bath and meds time and he was pretty tired. The next few photos are not GREAT but shows what we are looking at for his feet.
So the verdict on the feet and why we are doing this.- The phenol shots that were put in his gastric and abductors are to help with the tight muscles cause by CP ( or brain damage) by taking away the tight muscles we are hoping to encourage the not strong muscles to take over and help make his muscles some what normal.
- Casting, after the shots helps us stretch the muscles that have been tight for a long time in hopes that the shots will work and do their magic and a more "normal" gait will arise
- Casting will hopefully help future orthopedic problems. Look at his toes in the last pictures. They do not sit straight. They curve. That is a GOOD curve to normally how they look and it is WAY WAY worse and isn't suppose to be there .
Because he is totally dependant on me at this point I know I could use a few adults to converse with so I don't lose my sanity. I normally wouldn't' ask but I am asking for the help from friends and family at this time. Please come and help us out. I promise the favor will be returned.
And the moral of my story:
I love Tyler. I feel I have given up every part of who I "was" and was "going to be" in order to be his mom. More so by going to the therapy, advocating really loudly sometimes and losing "friends" in the process. I needed my son to have the best possible outcome for his sake. I will continue to do that, even it it does step on toes.
I love him more than anything.
The words of my song as I beg my Father in Heaven
Can you hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
I will and would take his place in a heartbeat.
T you are MY bravest of Heroes
9 comments:
Ty, you are very brave... So proud of you... If I was there I'd sign your casts! Mom, your also brave too, so is dad... Average people will never understand how grateful a disabled child is to their parent to care taker... When it's all over, all the screaming, crying, and fits... in the end, he's still your son, and he still loves you; and you will always love him...
you are in my prays and will help how i can. let me know im here.
Nancy...bless you, Tyler and Dallas...that song always makes me cry...I remember that Clarissa had it on her blog and when our Gavin was so sick, I would listen and pray...I don't know if you remember her video montage, but if you do, just know that the future is so bright someday you and Ty will be wearing shades:)
What a brave boy. If I lived anywhere nearby I would come by and help save your sanity!
He is a brave little boy! I am sorry I got cut off last night, our internet STINKS! If it rains/snows/wind blows....it goes out for hours. I hope today is a bit better day. Sending hugs your way!
((HUG)) If you were still here in AZ I would come and visit you! I do not know you personally but I know what it is like to be stuck in the house and no adult interaction.
Bree does the same thing with anesthesia and it is hard to deal with. I know what you mean about blocking it out.
Hi Ty! Those are pretty good looking casts you have! You are so blessed to have such a good mommy and daddy who love you and want you to stand big and tall, walk and run, and swim like a dolphin! I know you know how to swim...You splashed me so many times while you were swimming in your play pool! Maybe the doctor could attach skis on the bottom of your casts and you could ski on all those snow covered hills where you live! That would be fun, hu? I miss seeing your sweet face! My grandson has big blue eyes like yours and it reminds me of you when I look at him. You are an awesome boy! Keep being the brave boy you are! Say "HI" to Barney for me, OK?
Nancy & Dallas, Keep up the great work of being Ty's parents. You're awesome! May the Lord bless you with the strength you need.
Sincerely,
Corinne Hurst
POOR BROWN FAMILY!!! I wish I could come and help you but 2,00 miles is a little too far. You can give me a call on my cell phone ((714)612-4131) and I will be happy to lend my ear to you. You are all in my thoughts and prayers. I hope Tyler's days get better. SLY!!!
Nancy,
When can I come take you to lunch? Maybe sometime the first of January? I would LOVE LOVE LOVE to see you. I read your blog all the time because it gives me the strength I need on days that are hard. You are doing an amazing job and I admire and look up to you so much. Hang in there. Ty is a little angel and I would love to meet him in person...as would Makayla.
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