For those of you not connected to me on Facebook...Hudson has been admitted into the hospital today. He has pneumonia and partial collapsed lung with his heart being pushed over.
Prayers are appreciated.
Tuesday, October 30, 2012
Friday, October 19, 2012
In a month...
Wow...a month has passed since I have updated. I am sorry to those who actually read my blog and have wondered how Hudson is doing...I really didn't mean to leave you hanging ( and I say that literally to the one person who may actually stop here and read.... as I am not even sure if anyone reads this blog anymore!)
Hudson is holding steady...his last hospitalization was on the heels of my mom's 4 week vacation on a cruise around the world....okay, not around the world, although it feels like she has been gone that long, but an amazing vacation she so incredibly deserves! Hudson just knew there was no margin for error once Nana was on the high seas, so he made sure to get his hospitalization in prior! Way to go Hudson! He got all the good juices he needed to keep him going while she has been gone....today, he is his regular gunky self, some days are better than others. This has actually been a pretty great week for him. Minimal seizures, sleeping well, not a ton of suctioning....praise God for a good week! We deserve them and will gladly take them!!! I should rephrase...HUDSON deserves them...he deserves far beyond "good" days....but we take what we we can get, and praise Jesus for the "good" ones.
I had a ton of anxiety with my mom heading out of town. I rely so much on her.
Honestly? It completely sucks to be my age and admit you need your mom....but I do. She takes over with Hunter and Hailey when Hudson needs medical attention, she is my best friend, she is my wine drinking partner, she is my confidant, she makes me laugh and sometimes frustrates me, BUT I adore her...and I right now I really miss her. I have some truly great friends....I am so blessed. Friends that knew it would be rough on me with my mom gone...after all, the past 10 months my mom and Fred have not left my side, they have been there at every moment...as I go through this process of trying to heal, and come to grips with all that has happened....they have never left my side. I encouraged them to go on this amazing cruise out of Hawaii, ending in Australia. I reassured them I would be just fine, the kids were great, Hudson would do well....and we are. In the meantime, those wonderful friends I mentioned have stepped in and filled my weekends. Girls nights out, dinner at friends, pumpkin carving and pizza night....they just let me know I am not alone. I am blessed.
What I have found, is when I stop worrying and let God do the work in my life...the work to figure out the small details that sometimes I just don't want to look at, He shows up and shows me He is working it all out for my good. I am grateful to know this. To know it is not all up to me.
So, all in all, things are good. The kids are doing really well in school...they have the absolute BEST teachers. Even the best "past" teachers....I got an email from Hunter's teacher from last year. Get this....he wanted to know if he could just spend some time with Hunter, as Hunter holds a special place in his heart and so they will hang out after school one day a week....shooting hoops, hitting the tennis ball, playing games, working on homework, etc. Like I said....God just shows up.
I am so proud of my kids...they have been through alot....they both are straight A students, and continue to give their all in everything they do. They are so faithful, and loving...I am so proud of who they are in spite of all our trials. I pray for them constantly...I rely on God as a father to my kids...and He shows up....He is a dad that is always there for his kids, he doesn't disappoint...
It is beautiful.
I am doing pretty okay myself. I have good and not so good days, but God shows up for me too....after all, I am one of His kids too! The week my mom left, Hudson's caretaker became my full time caretaker. She was only giving me 1-3 hours a couple days a week. The week my mom left her full time family of 4 years parted ways with her....their loss has been my gain. She is here pretty much 5 days a week, either from 10-3, or 9-2. At first I felt guilty spending so much time away from little Hudson, but I know in 5 years I have been there 24/7 with no help. I have always put myself on the back burner and taken care of everyone elses needs. Not anymore. I workout a minimum of 5 days a week. Hardcore cardio....where I am dripping and disgusting...it feels AMAZING! I throw my head phones on and listen to worship music or a sermon I missed and sweat! I feel the best I have felt in years....I am taking care of ME! It is truly the best therapy....good for the mind, body and soul. I started this process back in April with the help of my mom and Christina. I was worried with my mom being gone, my gym days would be far and few between....having her full time once my mom left was Gods way of once again taking care of those fine details.
It is all about Gods great providence....
life happens, tragedy happens, sadness ensues, the unexpected swallows you whole.....where do you go? Who do you turn to?
I have allowed my trials and tragedies to deepen my faith, to rely on God, to trust He who is in control...I am a work in progress...I don't always do it well or right....but I have a great God who makes it all well and right, even through all my screw ups! I am blessed....HE just shows up for me.
I leave you with our trip to the pumpkin patch last weekend, in our efforts to pick the perfect pumpkin!
Hudson is holding steady...his last hospitalization was on the heels of my mom's 4 week vacation on a cruise around the world....okay, not around the world, although it feels like she has been gone that long, but an amazing vacation she so incredibly deserves! Hudson just knew there was no margin for error once Nana was on the high seas, so he made sure to get his hospitalization in prior! Way to go Hudson! He got all the good juices he needed to keep him going while she has been gone....today, he is his regular gunky self, some days are better than others. This has actually been a pretty great week for him. Minimal seizures, sleeping well, not a ton of suctioning....praise God for a good week! We deserve them and will gladly take them!!! I should rephrase...HUDSON deserves them...he deserves far beyond "good" days....but we take what we we can get, and praise Jesus for the "good" ones.
I had a ton of anxiety with my mom heading out of town. I rely so much on her.
Honestly? It completely sucks to be my age and admit you need your mom....but I do. She takes over with Hunter and Hailey when Hudson needs medical attention, she is my best friend, she is my wine drinking partner, she is my confidant, she makes me laugh and sometimes frustrates me, BUT I adore her...and I right now I really miss her. I have some truly great friends....I am so blessed. Friends that knew it would be rough on me with my mom gone...after all, the past 10 months my mom and Fred have not left my side, they have been there at every moment...as I go through this process of trying to heal, and come to grips with all that has happened....they have never left my side. I encouraged them to go on this amazing cruise out of Hawaii, ending in Australia. I reassured them I would be just fine, the kids were great, Hudson would do well....and we are. In the meantime, those wonderful friends I mentioned have stepped in and filled my weekends. Girls nights out, dinner at friends, pumpkin carving and pizza night....they just let me know I am not alone. I am blessed.
What I have found, is when I stop worrying and let God do the work in my life...the work to figure out the small details that sometimes I just don't want to look at, He shows up and shows me He is working it all out for my good. I am grateful to know this. To know it is not all up to me.
So, all in all, things are good. The kids are doing really well in school...they have the absolute BEST teachers. Even the best "past" teachers....I got an email from Hunter's teacher from last year. Get this....he wanted to know if he could just spend some time with Hunter, as Hunter holds a special place in his heart and so they will hang out after school one day a week....shooting hoops, hitting the tennis ball, playing games, working on homework, etc. Like I said....God just shows up.
I am so proud of my kids...they have been through alot....they both are straight A students, and continue to give their all in everything they do. They are so faithful, and loving...I am so proud of who they are in spite of all our trials. I pray for them constantly...I rely on God as a father to my kids...and He shows up....He is a dad that is always there for his kids, he doesn't disappoint...
It is beautiful.
I am doing pretty okay myself. I have good and not so good days, but God shows up for me too....after all, I am one of His kids too! The week my mom left, Hudson's caretaker became my full time caretaker. She was only giving me 1-3 hours a couple days a week. The week my mom left her full time family of 4 years parted ways with her....their loss has been my gain. She is here pretty much 5 days a week, either from 10-3, or 9-2. At first I felt guilty spending so much time away from little Hudson, but I know in 5 years I have been there 24/7 with no help. I have always put myself on the back burner and taken care of everyone elses needs. Not anymore. I workout a minimum of 5 days a week. Hardcore cardio....where I am dripping and disgusting...it feels AMAZING! I throw my head phones on and listen to worship music or a sermon I missed and sweat! I feel the best I have felt in years....I am taking care of ME! It is truly the best therapy....good for the mind, body and soul. I started this process back in April with the help of my mom and Christina. I was worried with my mom being gone, my gym days would be far and few between....having her full time once my mom left was Gods way of once again taking care of those fine details.
It is all about Gods great providence....
life happens, tragedy happens, sadness ensues, the unexpected swallows you whole.....where do you go? Who do you turn to?
I have allowed my trials and tragedies to deepen my faith, to rely on God, to trust He who is in control...I am a work in progress...I don't always do it well or right....but I have a great God who makes it all well and right, even through all my screw ups! I am blessed....HE just shows up for me.
I leave you with our trip to the pumpkin patch last weekend, in our efforts to pick the perfect pumpkin!
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Tuesday, September 18, 2012
The season isn't here.....
And we are in the E.R.
Hudson has some type of viral infection but being admitted for what it is doing to him metabolically .
High ammonia levels, high heart rate, dehydrated, horrific gripping seizures.
I think he is all about making a statement during Mitochondrial Awareness Week.....
Hudson has some type of viral infection but being admitted for what it is doing to him metabolically .
High ammonia levels, high heart rate, dehydrated, horrific gripping seizures.
I think he is all about making a statement during Mitochondrial Awareness Week.....
Tuesday, August 28, 2012
Facing my Fears means Trusting
I have had my share of fear facing in one life time.
As a parent, I can't think of anything worse than finding out your child is not only sick, but suffers at the hands of an incurable disease. It is the most helpless feeling not being able to help your child, communicate with your child, mend what ails them....and honestly, with time it doesn't get any easier, it is just a painful reality daily.
The more I want to and tend to hold on to Hudson with white knuckles, is when I realize I really have to lay him at the feet of Jesus... over and over again....
I must trust He who created him...and pray Hudson's time here on earth is carved out longer than this disease allows him to live. That had not been an easy place to come to and I am not sure I am fully there....but the fear of having a sick child and the fear of outliving your child, can be paralyzing. I choose not to be paralyzed with fear...I think for much of Hudson's time here so far I have been numb with fear....fear of how I can care for him as he grows, fear of what pains him, fear of loosing him one day...fear creeps in often, and the enemy can and will pounce on vulnerability....
I choose Jesus, not fear.
So much of Hudson's life is out of my control....
I choose to replace my fears with trust...
I am going to trust God has a plan with Hudson, I am going to trust that His love for Hudson surpasses all the love I have for him, I choose to trust in the plan God has for today and will not worry about tomorrow.
Many days I have to repeat these thoughts in my head...because it is so easy to find myself worried, and blanketed in fear. I have to remind myself how big God is and how perfect His plan is and how imperfect mine are.
The state of WA has a huge Whooping Cough outbreak. I am not sure if other states are experiencing what we are, but it is bad here. I probably wouldn't be paying much attention to the epidemic if it weren't for Hudson. It has been seeded in the back of my head for some time now...none of my kids are vaccinated (worry) What happens if Hudson gets this? (worry) Do I need to vaccinate? (worry)
More worry...whooping cough has hit 2 of my best friends...
I found out a friend of mine who lives in Eastern WA, who was here for a visit, both her kids were confirmed whooping cough cases at the beginning of summer. Then just a week ago my neighbor and good friend got it....now she thinks her husband may have it. I know it is hard on a healthy person to endure....what happens to Hudson if he gets it????(worry, worry, worry)
So, the nagging at me lead me to call the mito nurse. She confirmed it is imperative Hudson, Hailey, and Hunter get the vaccination. Anybody who is in contact with him should be newly vaccinated. There is the belief that those who were vaccinated years ago, the vaccine may not have been strong enough, which is why it is spreading.
Yesterday we all got vaccinated, my mom and Kate did as well. I am asking anyone who we are in contact with often to get vaccinated. The kids will go back to school soon and it will be a whole new set of worries and exposure. Hudson has to have a series of vaccines because of his age, so he is not fully protected right now.
Whooping cough attacks the respiratory system. Hudson has many strikes against him, and as I was reminded, this virus kills healthy babies.
What more can I do?
I trust...
I will pray that God will blanket Hudson in protection, that His plan is greater than mine. That any fear will subside knowing God is in control, and He will bring me peace.
I remind myself how God is in control and has shown me time and time again of this...
I was told if Hudson got Swine Flu, he could die....lots of fear...and he did get it, and clearly survived....and actually got through it fairly easy...praise God!
A few months back he got RSV....another one that can be life threatening, especially for children like Hudson...he survived....praise God!
Yes, God has a plan for my super hero....I know Hudson is here to serve Him, to encompass Gods love and goodness and to spread that here on earth...
I thank God for him, for his mission, for giving me such an angel boy who is teaching me life lessons....I will pray for his mission to be a long one, that no whooping cough epidemic will touch my boy....I pray, I do my best to protect, and I trust. God is in control.
Be Strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.
Deuteronomy 31:6
As a parent, I can't think of anything worse than finding out your child is not only sick, but suffers at the hands of an incurable disease. It is the most helpless feeling not being able to help your child, communicate with your child, mend what ails them....and honestly, with time it doesn't get any easier, it is just a painful reality daily.
The more I want to and tend to hold on to Hudson with white knuckles, is when I realize I really have to lay him at the feet of Jesus... over and over again....
I must trust He who created him...and pray Hudson's time here on earth is carved out longer than this disease allows him to live. That had not been an easy place to come to and I am not sure I am fully there....but the fear of having a sick child and the fear of outliving your child, can be paralyzing. I choose not to be paralyzed with fear...I think for much of Hudson's time here so far I have been numb with fear....fear of how I can care for him as he grows, fear of what pains him, fear of loosing him one day...fear creeps in often, and the enemy can and will pounce on vulnerability....
I choose Jesus, not fear.
So much of Hudson's life is out of my control....
I choose to replace my fears with trust...
I am going to trust God has a plan with Hudson, I am going to trust that His love for Hudson surpasses all the love I have for him, I choose to trust in the plan God has for today and will not worry about tomorrow.
Many days I have to repeat these thoughts in my head...because it is so easy to find myself worried, and blanketed in fear. I have to remind myself how big God is and how perfect His plan is and how imperfect mine are.
The state of WA has a huge Whooping Cough outbreak. I am not sure if other states are experiencing what we are, but it is bad here. I probably wouldn't be paying much attention to the epidemic if it weren't for Hudson. It has been seeded in the back of my head for some time now...none of my kids are vaccinated (worry) What happens if Hudson gets this? (worry) Do I need to vaccinate? (worry)
More worry...whooping cough has hit 2 of my best friends...
I found out a friend of mine who lives in Eastern WA, who was here for a visit, both her kids were confirmed whooping cough cases at the beginning of summer. Then just a week ago my neighbor and good friend got it....now she thinks her husband may have it. I know it is hard on a healthy person to endure....what happens to Hudson if he gets it????(worry, worry, worry)
So, the nagging at me lead me to call the mito nurse. She confirmed it is imperative Hudson, Hailey, and Hunter get the vaccination. Anybody who is in contact with him should be newly vaccinated. There is the belief that those who were vaccinated years ago, the vaccine may not have been strong enough, which is why it is spreading.
Yesterday we all got vaccinated, my mom and Kate did as well. I am asking anyone who we are in contact with often to get vaccinated. The kids will go back to school soon and it will be a whole new set of worries and exposure. Hudson has to have a series of vaccines because of his age, so he is not fully protected right now.
Whooping cough attacks the respiratory system. Hudson has many strikes against him, and as I was reminded, this virus kills healthy babies.
What more can I do?
I trust...
I will pray that God will blanket Hudson in protection, that His plan is greater than mine. That any fear will subside knowing God is in control, and He will bring me peace.
I remind myself how God is in control and has shown me time and time again of this...
I was told if Hudson got Swine Flu, he could die....lots of fear...and he did get it, and clearly survived....and actually got through it fairly easy...praise God!
A few months back he got RSV....another one that can be life threatening, especially for children like Hudson...he survived....praise God!
Yes, God has a plan for my super hero....I know Hudson is here to serve Him, to encompass Gods love and goodness and to spread that here on earth...
I thank God for him, for his mission, for giving me such an angel boy who is teaching me life lessons....I will pray for his mission to be a long one, that no whooping cough epidemic will touch my boy....I pray, I do my best to protect, and I trust. God is in control.
Be Strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.
Deuteronomy 31:6
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Hudson Tyler
Our sweet angel!