Most of you have followed our story from day one, and many know the tests that have been put in front of us over the last 11 months. We never know exactly how or when these little tests pop up, but they do and we learn to cope. Adapt. Like Darwin said, the survivors are not necessarily the strongest, but those who willfully adapt.
Over the last two months our medical supply company changed, and we've not been happy about it. New company means retraining, reordering, new delivery times etc etc. The most important of these are the pulse oximeter probes that we wrap around Cash's feet, which plug into the monitor. They keep track of his pulse and oxygen levels.
After a hiccup in delivery, we only received 2 probes which is nearly impossible to stretch out over a month's worth of use. So we adapted. Last night Cash slept without being monitored for the first time in his life. A pacifier for us, to lose this monitoring was nerve busting to say the least. He survived.
The point of this blog is not to mull the details of probes, but to emphasize the point that as a family we have learned to morph and adapt, adjust and change into the new normal. I think we are doing very well.
Savy has been a big concern for us, for obvious reasons. She has the occasional break down at school and home, but for the most part she has been great. Yesterday we met with her new teachers and they gave us a huge compliment. Not only is Savy doing well in school with regards to grades, but they also made note that she avoids drama(Probably already has enough). They continued, saying she is very empathetic, caring for other kids and always lending a hand. What a great thing to hear!! We were so proud.
So we are just trucking along, doing the routine and adjusting into our La Vida Loca. As I type this Cash is having his 4th therapy session this week. He continues to amaze me. What a strong will and headstrong determination he has. I love him so much.
Thank you God for all your blessings. Amen
Friday, September 28, 2012
Wednesday, September 19, 2012
My Wife/His Mother
The list of reasons why we all love our wives and mothers is sure to be the longest. It is for all these reasons that authors, songwriters, poets and speakers have given so much thought and paper to the subject. To try and make a list for Kimberley would be futile; nothing more than a re-hash of what has already been said.
The simple fact that only a woman may carry our most precious gifts in life is testament enough to the respect they deserve, have earned and should be given. The list of women who have made the history books or are revered in the scripture are plenty. Many times they give us a perspective in life that could only be defined through the eyes and thoughts of an experienced, responsible woman.
My wife is no different. On the outside she is tougher than she needs to be. An armour encases her that is nearly impenetrable. I've been lucky enough to get past it, ashave her children. Few people will ever have that pleasure, nor the ability to do so.
Todays post is about her "inside". That glitter glue that holds her together. At her core, Kimberley is a traditional mother. Her work is important, but she prides herself most on her children. She is firm but fair, kind and reasonable, but has high standards. She smiles the most when around her kids. She has high hopes, big dreams and many goals for anyone in her life, but her children will always have a high bar to clear.
These traits are all what I admire most about her. In an age of mediocrity, low standards, gray areas and exceptions, Kimberley says no. She wants the best. It is why we fight to keep Savy in private school, push her to want more and have provided the best in care and therapy for Cash. If we had to sell everything to give either of them anything for their education or health, it would be done without thinking twice.
All of this comes with a price however, and I'm not talking about money this time. To raise your children with this mantra takes effort, time and resilience to stay the course. We are problem solvers, never blaming another and always taking full responsibility. Our methods and measuring stick must change for Cash. Kimberley is having a hard time of it.
With Savy, its easy: She comes home with an 88 on a spelling test and you ask her if she did her best. The next week we study a few minutes more and poof its a 100. Problem solved.
Health issues are different, specifically disabilities. If you get sick, you do what you can to get well. Most disease can be fought, sometimes at much cost. Vaccines prevent, eating right drops the pounds and an antibiotic kills the bug. Disabilities, at least CP, cannot be "fixed". For a problem solving mother who believes trying harder and doing your best will get you your reward, this is baffling.
Savy is becoming more aware of the differences between Cash and other children his age, now 10.5 months. It has been hard for us to explain this to her and having her understand that this is not a punishment of sins, rather a blessing we cannot explain, yet. These conversations are taxing for Kimberley and I, taking our already emotionally charged minds to another stratosphere. Anyone who has dealt with a long term illness or disability can attest that there are times you are completely consumed by the thoughts of why, how etc. These emotional rollercoasters, I assume, will level off in time as the "new normal" places itself firmly in our everyday lives. I pray. On the other hand, on good days, you don't stop thinking about it, but you cope and manage your way through it. Think about the first time your child drove a car without you, or went on a date. You know how you are thinking about them the whole time they are away, that little worry or concern you cannot let go of until they walk back through the door; this is our good day.
We are hypersensitive to all of Cash's needs. If Savy has a bump or bruise, we look, apply the band-aid and tell her to get over it. Cash is another matter. I'll give you an example. CP kids work so hard to move, and the effort to make a movement takes more energy and time than most. There are times Cash will be in a completely relaxed state, recharging his batteries if you will, while just staring at you. This happened last night while Kim took Cash for a walk. She came back within 5 minutes upset and beside herself. Crying, she explained that he seemed distant and blank. Her time is valuable with Cash and that he wasn't having an "interactive" time with her, hurt her feelings. She asked if there was something wrong with him. Is the shunt blocked? Had the surgery gone wrong? Will he not be able to communicate with us? Questions that are hard to ask, much less answer. I explained that he has these moments and why. She should not worry, but my words can only ease the concern, not make it go away.
We have a lot in front of us, and the how's, why's and worry will continue, possibly forever.
We can learn to cope and measure Cash by another stick, and he will make progress,as he already has. We will communicate, no telling exactly how just yet. Maybe he will be a writer, or maybe he will just smile a lot, but one thing is for sure; no one will ever understand our son like we will.
Kimberley is having a rough time, it is to be expected; she will adapt. Her standards will remain high, but how she grades the report will have to change. We must not jump to conclusions, no matter how much we need answers. Savy must remain a priority and not allow her to get lost in our shortcomings and stress, all the while including her in our journey to understanding.
Meanwhile, Cash will rest, grow and become stronger; laughing and smiling when he deems fit.
Kimberley,
I want you to always know you are not on your own. I will always be here for you, as will Savy.
Find your peace in knowing you have been chosen to care for a miracle. When I get down, I look at him and think of 11/4/11; he has come so far, so have we. Much too far to give credit only to health providors and our efforts. God is working in him and us. We must let him continue to do so. I would not want anyone else to walk this path with me. Remember the picture I made for you? Its a mountain in front of us, but we get to the top by climbing the hills.
I love you,
Matthew
Here are some verses I find helpful:
Matthew 5:5 Blessed are the meek, for they shall inherit the earth.
Phillipians 4:13 I can do all things through Christ which strengtheneth me
1 Peter 4:1 Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin...
The simple fact that only a woman may carry our most precious gifts in life is testament enough to the respect they deserve, have earned and should be given. The list of women who have made the history books or are revered in the scripture are plenty. Many times they give us a perspective in life that could only be defined through the eyes and thoughts of an experienced, responsible woman.
My wife is no different. On the outside she is tougher than she needs to be. An armour encases her that is nearly impenetrable. I've been lucky enough to get past it, ashave her children. Few people will ever have that pleasure, nor the ability to do so.
Todays post is about her "inside". That glitter glue that holds her together. At her core, Kimberley is a traditional mother. Her work is important, but she prides herself most on her children. She is firm but fair, kind and reasonable, but has high standards. She smiles the most when around her kids. She has high hopes, big dreams and many goals for anyone in her life, but her children will always have a high bar to clear.
These traits are all what I admire most about her. In an age of mediocrity, low standards, gray areas and exceptions, Kimberley says no. She wants the best. It is why we fight to keep Savy in private school, push her to want more and have provided the best in care and therapy for Cash. If we had to sell everything to give either of them anything for their education or health, it would be done without thinking twice.
All of this comes with a price however, and I'm not talking about money this time. To raise your children with this mantra takes effort, time and resilience to stay the course. We are problem solvers, never blaming another and always taking full responsibility. Our methods and measuring stick must change for Cash. Kimberley is having a hard time of it.
With Savy, its easy: She comes home with an 88 on a spelling test and you ask her if she did her best. The next week we study a few minutes more and poof its a 100. Problem solved.
Health issues are different, specifically disabilities. If you get sick, you do what you can to get well. Most disease can be fought, sometimes at much cost. Vaccines prevent, eating right drops the pounds and an antibiotic kills the bug. Disabilities, at least CP, cannot be "fixed". For a problem solving mother who believes trying harder and doing your best will get you your reward, this is baffling.
Savy is becoming more aware of the differences between Cash and other children his age, now 10.5 months. It has been hard for us to explain this to her and having her understand that this is not a punishment of sins, rather a blessing we cannot explain, yet. These conversations are taxing for Kimberley and I, taking our already emotionally charged minds to another stratosphere. Anyone who has dealt with a long term illness or disability can attest that there are times you are completely consumed by the thoughts of why, how etc. These emotional rollercoasters, I assume, will level off in time as the "new normal" places itself firmly in our everyday lives. I pray. On the other hand, on good days, you don't stop thinking about it, but you cope and manage your way through it. Think about the first time your child drove a car without you, or went on a date. You know how you are thinking about them the whole time they are away, that little worry or concern you cannot let go of until they walk back through the door; this is our good day.
We are hypersensitive to all of Cash's needs. If Savy has a bump or bruise, we look, apply the band-aid and tell her to get over it. Cash is another matter. I'll give you an example. CP kids work so hard to move, and the effort to make a movement takes more energy and time than most. There are times Cash will be in a completely relaxed state, recharging his batteries if you will, while just staring at you. This happened last night while Kim took Cash for a walk. She came back within 5 minutes upset and beside herself. Crying, she explained that he seemed distant and blank. Her time is valuable with Cash and that he wasn't having an "interactive" time with her, hurt her feelings. She asked if there was something wrong with him. Is the shunt blocked? Had the surgery gone wrong? Will he not be able to communicate with us? Questions that are hard to ask, much less answer. I explained that he has these moments and why. She should not worry, but my words can only ease the concern, not make it go away.
We have a lot in front of us, and the how's, why's and worry will continue, possibly forever.
We can learn to cope and measure Cash by another stick, and he will make progress,as he already has. We will communicate, no telling exactly how just yet. Maybe he will be a writer, or maybe he will just smile a lot, but one thing is for sure; no one will ever understand our son like we will.
Kimberley is having a rough time, it is to be expected; she will adapt. Her standards will remain high, but how she grades the report will have to change. We must not jump to conclusions, no matter how much we need answers. Savy must remain a priority and not allow her to get lost in our shortcomings and stress, all the while including her in our journey to understanding.
Meanwhile, Cash will rest, grow and become stronger; laughing and smiling when he deems fit.
Kimberley,
I want you to always know you are not on your own. I will always be here for you, as will Savy.
Find your peace in knowing you have been chosen to care for a miracle. When I get down, I look at him and think of 11/4/11; he has come so far, so have we. Much too far to give credit only to health providors and our efforts. God is working in him and us. We must let him continue to do so. I would not want anyone else to walk this path with me. Remember the picture I made for you? Its a mountain in front of us, but we get to the top by climbing the hills.
I love you,
Matthew
Here are some verses I find helpful:
Matthew 5:5 Blessed are the meek, for they shall inherit the earth.
Phillipians 4:13 I can do all things through Christ which strengtheneth me
1 Peter 4:1 Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin...
Thursday, September 13, 2012
Surgery...again
Not as big of a deal, but still a surgery.
Cash has had a hernia since birth that needs to be corrected. It has also prevented one testicle from dropping. Then theres the old circumcision, put on hold til now. These three minor procedures will begin at 8:15am Friday Sept 14, 2012.
The only part we are really worried about is that he will be put under, and will be assisted with O2.
This may cause him to need O2 assistance for a day or two after. We are just nervous about taking steps backwards in this department. He is still a little shaky in his O2 levels.
The surgery is scheduled overnight, but they will release him if doing well, the same day.
Bubba aint gonna be a happy camper the next few days, thats for sure. Thankfully we have our outstanding nurse coming Saturday to help us the first day with cleaning incisions and keeping Cash comfortable.
So, it looks like this weekend will be football overload while we care for our little boy. Here's to hoping we don't have any complications or additional surgeries for at least a year. Thanks for your prayers in advance!
Cashtons Daddy
Cash has had a hernia since birth that needs to be corrected. It has also prevented one testicle from dropping. Then theres the old circumcision, put on hold til now. These three minor procedures will begin at 8:15am Friday Sept 14, 2012.
The only part we are really worried about is that he will be put under, and will be assisted with O2.
This may cause him to need O2 assistance for a day or two after. We are just nervous about taking steps backwards in this department. He is still a little shaky in his O2 levels.
The surgery is scheduled overnight, but they will release him if doing well, the same day.
Bubba aint gonna be a happy camper the next few days, thats for sure. Thankfully we have our outstanding nurse coming Saturday to help us the first day with cleaning incisions and keeping Cash comfortable.
So, it looks like this weekend will be football overload while we care for our little boy. Here's to hoping we don't have any complications or additional surgeries for at least a year. Thanks for your prayers in advance!
Cashtons Daddy
Wednesday, September 5, 2012
My Biggest Fear...
I was asked recently what my biggest fear for Cash is.
Aside from losing him, here was my response and explanation.
My biggest fear for Cash is that he will never get to experience love. The kind you have with your spouse/significant other. Therapy, Special Education, wheelchairs, even surgery do not scare me as much as the possibility Cash never finds love, the romantic kind. A broken heart is better than to never have been loved at all, right?
As a parent, we wish all these things for our kids, many of which I've found to be more for me than him. To see him suit up for a game, or get stuck in the mud at the bay; run across a field chasing after a dove or play hide and seek with his best friend. These are what little kids do, and I want that for him. That being said, there are lots of kids who have never done some of those things, I'm sure there are many who haven't done a one thing mentioned and they live happy fulfilling lives, but what if they never experienced falling in love? I couldn't imagine.
When I was younger, I always had a girl on my mind; he doesn't necessarily need the "always", but it would be tough to see him "never" have that thought or feeling. Worse yet, he has those feelings but they are not returned. Will he remain constantly heart broken and never "good enough" to be considered a worthy partner in life? Will a young lady ever look at my son and see a man, and not just one to be cared for, but as a lover, partner and potential father; all that goes with a life with someone you love.
We just assume this will happen at some point for our kids right? I mean, when was the last time you looked at your child and thought, "I really am concerned that someone may never love you." It's heartbreaking, no?
We always look at them and think, "I hope you live up to your potential and get straight A's," or "You look just like your mother, and you have her quick wit." Meanwhile they are jabbering about their day or what just happened on TV, but you are thinking all these thoughts about how perfect they are, or depending on the day, how much they frustrate you because they cannot seem to turn the damn lights off in any room at any time ever!!!
Regardless, we all think these random thoughts, but never in the last 8 yrs of Savy's life have I looked at her and thought, "Will someone be able to fall in love with her? Will she experience the beauty of a loving relationship? A family? A true love?" In fact its just the opposite for me when I watch Savy talk. I'm thinking, "This girl is gonna have to beat the guys off with a stick! She is awesome!" You see, I think the same things about Cash, cuz he is awesome too. He's adorable, and I'm sure he will dazzle the ladies with his sky blue eyes, but after they get past those windows to his soul will they think, "What a cute guy, I'll always be here as his friend to help him." or will they think, "I can love this man."
I know it seems like I am rambling a bit, and to be honest I am, but its my fear. I was asked.
Aside from losing him, here was my response and explanation.
My biggest fear for Cash is that he will never get to experience love. The kind you have with your spouse/significant other. Therapy, Special Education, wheelchairs, even surgery do not scare me as much as the possibility Cash never finds love, the romantic kind. A broken heart is better than to never have been loved at all, right?
As a parent, we wish all these things for our kids, many of which I've found to be more for me than him. To see him suit up for a game, or get stuck in the mud at the bay; run across a field chasing after a dove or play hide and seek with his best friend. These are what little kids do, and I want that for him. That being said, there are lots of kids who have never done some of those things, I'm sure there are many who haven't done a one thing mentioned and they live happy fulfilling lives, but what if they never experienced falling in love? I couldn't imagine.
When I was younger, I always had a girl on my mind; he doesn't necessarily need the "always", but it would be tough to see him "never" have that thought or feeling. Worse yet, he has those feelings but they are not returned. Will he remain constantly heart broken and never "good enough" to be considered a worthy partner in life? Will a young lady ever look at my son and see a man, and not just one to be cared for, but as a lover, partner and potential father; all that goes with a life with someone you love.
We just assume this will happen at some point for our kids right? I mean, when was the last time you looked at your child and thought, "I really am concerned that someone may never love you." It's heartbreaking, no?
We always look at them and think, "I hope you live up to your potential and get straight A's," or "You look just like your mother, and you have her quick wit." Meanwhile they are jabbering about their day or what just happened on TV, but you are thinking all these thoughts about how perfect they are, or depending on the day, how much they frustrate you because they cannot seem to turn the damn lights off in any room at any time ever!!!
Regardless, we all think these random thoughts, but never in the last 8 yrs of Savy's life have I looked at her and thought, "Will someone be able to fall in love with her? Will she experience the beauty of a loving relationship? A family? A true love?" In fact its just the opposite for me when I watch Savy talk. I'm thinking, "This girl is gonna have to beat the guys off with a stick! She is awesome!" You see, I think the same things about Cash, cuz he is awesome too. He's adorable, and I'm sure he will dazzle the ladies with his sky blue eyes, but after they get past those windows to his soul will they think, "What a cute guy, I'll always be here as his friend to help him." or will they think, "I can love this man."
I know it seems like I am rambling a bit, and to be honest I am, but its my fear. I was asked.
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