I made an entry during September of 2012 about Kimberley and her experience dealing with a newborn who has CP. I was going to post a new entry about yesterdays big doctor visit but after re-reading the post titled "My Wife-His Mother" I've decided to provide an update with regards to it. I hope you enjoy.
You can revisit the old blog entry here, I encourage you to give it another look.
http://prayersforcash.blogspot.com/2012/09/my-wifehis-mother.html
The damned measuring stick keeps getting adjusted. It may be one of the most difficult parts to understand your child's growth. I mean even for a parent of a "normally developing" child, isn't this a pain in the butt? One year at school your kid excels in every way-seemingly without a drop of sweat they breeze through the year with straight A's, a couple 3 pointers and lots of spiritual growth; then the next year you look at them at some point and ask, "Who are you?" "What the hell happened to last years kid?" No? Well, heck I guess it's just me then. There are times when Savy is on a roll, kickin' butt, then all of a sudden BOOM, she just can't get her crap together. We all have our ups and downs I suppose, but typically we kinda know what our children are capable of from one day to the next with rare surprises.
Por ejemplo, Savy tells me she's going to do the high jump in track for school. Now I aint sayin' she can't, but the girl is knee high to a grasshopper on a good day in heels. The typical jumper is long and leggy, tall even and above all else-a real athlete. Savy likes to wear cheerleader uniforms with a bow in her hair. She looks darn good to. She loves football, which doesn't hurt seeing as she will spend 75% of her cheer career watching the game, but she doesn't have to run or hurl herself over a bar taller than her head. Feel me?
Ok,, back to what I was saying, the measuring stick can stick it. One day we see Cash running in his gate trainer across the room, smiling and opening doors and the next day he won't pull his knees up under him to learn to crawl. Meanwhile we have to get him to do his best and hopefully get him mobile. There's a job to do but you never know when your days work is over.
Kimberley, has a long measuring stick, as discussed in the previously mentioned blog entry,
She is methodical, engineer'ish in approach, practical and reliable. She is a rock. Nope, she is a cave. She is made of rock, but has little secret passage ways, caverns and a small opening out front to keep all those twisting tunnels safe. She keeps us all safe. Steady, firm and reliable.
Every couple in a lasting and healthy relationship experiences the handing off of the reins at certain times, taking turns righting the ship and maneuvering the choppy waters of life. Today, I pass the torch.
We will use your measuring stick Kimberley. I will travel your narrows and discover what you will reveal to me, because I know you will keep us safe. You are our children's enveloping arms and I know you know what is best. You are steadfast, deliberate and thoughtful, and I thank you.
I'm going to catch my breath. Still a long ride ahead, and if I've learned anything in this life it's that just as you hit dry land, there's always a rough landing.
I love you.
Thursday, January 28, 2016
Wednesday, January 13, 2016
He Is Perfectly And Wonderfully Made
It has been a while. Lots to cover, so lets get to it.
One of my many NY resolutions was to write more, and I've been waiting for a prompt; today, I got it in spades.
7:12am - I'm holding Cash, waiting for the girls to gather their things before heading off to school, when he points to Kimberleys elliptical machine and says "Me want! Cash go!" I replied, "Sorry bubba but that is for adults." Again he demands to use it and I say, "Cash you have to stand and walk on it, maybe another time."
Then he says what I have dreaded ever hearing him say.
"Me legs sick. Doc doc fix."
A punch to my gut is an understatement, I literally wanted to take him to my bed, wrap my arms around him all day and cry. I know it, everyone else knows it, the kids at school certainly don't forget to mention it-but now, he knows it.
This revelation probably came well before this exchange, but nevertheless, it was verbalized for the first time from son to father and it hurt. Cue sad music. Seriously though, it affected me more than I even thought it would, and it didn't help that the tone he uttered those few words sounded concerned. He knows.
I have no misconceptions about the physical shortcomings my son has-but there is just something about the notion that his little head has thoughts about them. When most children will be concerned about how long recess is, he is struggling with comprehending why he doesn't get to walk. For a parent, it defines the reality that your baby is growing up, and that he has emotion and concern about something most of us take for granted.
In the past Cash has said "Me walk", but his request was for you to carry him. Recently he says "Dadda carry Cash." I should've realized this understanding was becoming clear in his mind. At some point it was going to happen but I guess you can never really prepare for the shoe to drop-even though it is falling to the ground right in front of you.
Immediately after this exchange with Cash, Savy and Kim come walking up with all the necessary bags and coats for the day and whisk Cash away to the warming car, but Savy sees my face and as she is just about to step out the door looks back and asks, "Daddy are you crying?" "No I'm fine baby, have a great day!" I say as I hold back a welling tear. I didn't think anyone noticed. I took a couple deep breathes and went about my day, recounting this event every hour or so, wondering about the future.
Then the questions start
"Will he ever...?"
"Are we doing enough?"
"How much should we push him?"
"What do I say to him?"
"I should talk to Kim."
"Are these therapists at school trying?"
"I need to ask Savy how she is doing."
"Why are there still Thanksgiving decorations up at the guest house?"
"Should I play this insane Powerball?"
"Will he always have to use a walking device?"
"This dog sheds wayyyy too much."
"It can always be worse."
"This sucks."
"What am I cooking for dinner?"
"Who is picking the kids up from school?"
The last question was answered via text from Kimberley- I am on deck. She thanked me in advance.
"I should go grocery shopping."
"Will they ever get my bike fixed, and should I call them?"
"If I could burn that fucking wheelchair I would."
"If Cash went to TX State, how the hell would he get around that hilly campus? A&M is flat..STOP!"
Seriously this is how my brain works, and every one of these thoughts popped into my head today. I'm not sure if it is all that unique, but I swear I am never not answering a question I asked myself, so how many questions does Cash have?
1:45pm- I do the grocery thing, I have dinner and the college question answered in my head, and Duke is white. I chose the espresso wood floors, not him.
2:58pm- I call in Cash' medicines. Nothing crazy, just the typical allergy stuff, but it gets me rethinking this morning. I feel myself getting all "negative nelly" and refuse to allow it, so I think happy thoughts, like Cash running through the quad in San Marcos to get a girls number. I'm golden.
3:11-I hit the jackpot, going in through the outdoor, I land the one and only handicap space at Cash' school. Thats right, I am about to skip the entire line of cars and by doing so save me upwards of 15 minutes waiting to pick up Cash Money. Clouds part, the birds sing. Winning!
3:20- I see the first little rug rats exit the building, so I hop out and go wait at the front for my lil munchkin.
3:23- I'm looking for Cash, his wheelchair, his teacher-anything familiar through the crowds and then-I see him! He is in a new gait trainer, one I have never seen before and his sweet teacher is guiding him as he walks through the front doors right to my feet. I just won the Powerball of my life and all the "Will he's?" I could ever ask have been answered. No, not a definitive yes he will walk, but hope. More importantly, that big smile and Caribbean blue eyes were beaming as he said "Me walk! Dadda! Cash walk outside!" His teacher (Mrs. Flink-who is friggin' awesome and deserves all the praise any teacher could ask for-and prayers) says that he has been in his gait trainer for 15 minutes and walked from his classroom to pickup really well. He moved his legs, pushed and got where he knew he had to be.
It was a miracle. Not the walking, as he has been in a gait trainer many many times-though this may be the longest and seems to be the most productive time in it, but the timing of it. I needed this. He needed this. It was fitting that this little exchange and question we had this morning (and that I had allowed to negatively consume my day) was answered. I would not have normally picked Cash up, but God knew I needed to. He had Kim ask if I could get the kids so that I could witness this little boy be proud of himself and his accomplishment. I got to do it. God gave this moment to me, specifically. There is no other explanation.
3:27pm- I call Kimberley and tell her the good news-
Me:"Hey babe you are not going to believe who walked out of school to meet me in his gait trainer..."
Cash:"ME!!!"
Kimberley:"HaHaHa! Awe thats so awesome Cash!"
^^^That is literally word for word how it went down. He was so excited to tell his mommy. Who could blame him. He was beaming, and so was I.
I pick up Savy, tell her Cash' accomplishment and in her usual sweet voice she congratulates him with an added kiss on the cheek.
9:15pm- Everyone is snoring but me. Typical. I turn on E;60, a series focused on the world of sports and the feel good stories about folks in that business. I DVR it.
Tonight was a compilation, 3 stories of triumph. The first was about Ernie Johnson, the second about a dog that retrieves bats and the third about a little boy named Liam.
I'm going to review 2 of these stories. I fast forwarded through the golden-retriever vignette. Ernie was first, but I'll get back to him, let's meet Liam. Liam is a hockey fan, has downs-syndrome and beat Leukemia. Total tear jerker and the kid is amazing in so many ways. Certainly a tough little man, cute as a button and a smile that you can't help but want to see more of. He is basically a Bruins mascot and you may have seen him in a viral video about the "Fist-bump Kid". If not, here it is. Fist Bump Kid A beautiful story.
As great as Liam is however, the story that really got me was about Ernie Johnson. The son of a legendary sports announcer, he makes a name for himself-arguably even bigger than his pops. Meanwhile adopts 2 children, has 2 others, beats cancer, loses his dad and then finds out that his first adopted son who had multiple health issues as a small child has been diagnosed with a form of Muscular Dystrophy. The film follows Ernie through his daily routine with his son Michael, how he almost died, is now on a breathing machine and basically illustrates the hardship this family is dealing with while loving this 27 yr old son. Their strength, Michael's love for his dad and the happy nature with which they carry on their daily lives is inspiring.
But what really got me way down in the feels was one line; one simple line that comes from a man who has experienced every type of loss and pain one could experience.
"He was perfectly and wonderfully made."
Thank you Ernie, you just made this dads life more clear.
You can find Ernie's story here.
God bless, everyone.
Matthew
Tuesday, August 27, 2013
He's Got Legs
First off, I would be remiss to not mention that I dig me some ZZ Top.
So bubba has grown lots since I last posted. Everything from his hair to his legs are getting longer. We are due a haircut for sure, but those skinny legs are starting to find a purpose. Cash was fitted for AFO's(Ankle Foot Orthotics) a couple weeks ago and he gets them tomorrow! We are pretty excited to get these "magic shoes" on him and see what they can do in shaping his feet and legs as well as assist in his standing.
Last week Cash jumped in his jumper for the first time. A legitimate repetition and extension of both legs with the intention of movement. That's how I define it anyhow. Before last week his jumps were not really intentional or repetitive. So, we are excited! He has found his legs in the jumper as well as on the ground, scooting on his back from one side of the area rug to the other. He has also mastered rolling from left to right as well, which gives him good mobility when reaching for something. I liken it to an alligators "death roll". (Not really but you get the idea).
Sitting up alone still has some work, but he is very close. We can get up to a minute on occasion with him sitting up by himself, which gives us hope he will do it soon. The day I can sit him down with some toys to play with will be a miracle and a blessing. For us, the assumptions most parents make are lofty goals. Baby steps.
His smile is beautiful and refreshing. Every little millimeter of his smile adds fuel to keep pressing on. That toothy smile gives us renewed ambition to provide, love and persevere. We love him to pieces.
Savy started 4th grade yesterday and boy does he know it. Cash and Kimberley walked Savy to school the last two mornings, so he is starting to catch on to the routine. The best part of his day is when he sees her come running out of school at pick up time. He gets all excited and starts pumping those legs trying to run to her. It is a beautiful thing to see their relationship so strong. To be fair, Savy lights up as much as Cash does when she sees him. Kisses to and from each other are the standard greeting.
One other big milestone for Cash is the discontinued requirement to patch his right eye. This means the doc believes his left eye is strong and has good vision. The surgery he had worked like a charm; thank you Dr. Paysee. When we see old pictures of Cash, we always comment how glad we are that crossed eye is gone for good. It hurts me to think how many months his vision was double.
Cash has also been attending church nursery most Sundays. This is a really nice turn of events, and by all accounts both the ladies providing the care and Cash thoroughly enjoy the time. We are hoping to get him into a mothers day out program sometime in the near future. Once sitting up is mastered we will get him some much needed social interaction.
Sorry for the lack of updates, but life speeds by quickly. I know how many of you are interested in this life long race we are running and it still means the world to us that you care. Thank you, and I promise less time before the next post. God bless.
So bubba has grown lots since I last posted. Everything from his hair to his legs are getting longer. We are due a haircut for sure, but those skinny legs are starting to find a purpose. Cash was fitted for AFO's(Ankle Foot Orthotics) a couple weeks ago and he gets them tomorrow! We are pretty excited to get these "magic shoes" on him and see what they can do in shaping his feet and legs as well as assist in his standing.
Last week Cash jumped in his jumper for the first time. A legitimate repetition and extension of both legs with the intention of movement. That's how I define it anyhow. Before last week his jumps were not really intentional or repetitive. So, we are excited! He has found his legs in the jumper as well as on the ground, scooting on his back from one side of the area rug to the other. He has also mastered rolling from left to right as well, which gives him good mobility when reaching for something. I liken it to an alligators "death roll". (Not really but you get the idea).
Sitting up alone still has some work, but he is very close. We can get up to a minute on occasion with him sitting up by himself, which gives us hope he will do it soon. The day I can sit him down with some toys to play with will be a miracle and a blessing. For us, the assumptions most parents make are lofty goals. Baby steps.
His smile is beautiful and refreshing. Every little millimeter of his smile adds fuel to keep pressing on. That toothy smile gives us renewed ambition to provide, love and persevere. We love him to pieces.
Savy started 4th grade yesterday and boy does he know it. Cash and Kimberley walked Savy to school the last two mornings, so he is starting to catch on to the routine. The best part of his day is when he sees her come running out of school at pick up time. He gets all excited and starts pumping those legs trying to run to her. It is a beautiful thing to see their relationship so strong. To be fair, Savy lights up as much as Cash does when she sees him. Kisses to and from each other are the standard greeting.
One other big milestone for Cash is the discontinued requirement to patch his right eye. This means the doc believes his left eye is strong and has good vision. The surgery he had worked like a charm; thank you Dr. Paysee. When we see old pictures of Cash, we always comment how glad we are that crossed eye is gone for good. It hurts me to think how many months his vision was double.
Cash has also been attending church nursery most Sundays. This is a really nice turn of events, and by all accounts both the ladies providing the care and Cash thoroughly enjoy the time. We are hoping to get him into a mothers day out program sometime in the near future. Once sitting up is mastered we will get him some much needed social interaction.
Sorry for the lack of updates, but life speeds by quickly. I know how many of you are interested in this life long race we are running and it still means the world to us that you care. Thank you, and I promise less time before the next post. God bless.
Tuesday, January 1, 2013
So Long 2012
We officially survived our first year since the addition of Cash, and did so with flying colors I might add!
My last post was at the end of September, easily the longest stretch without a post. This is probably a good thing, as this blog is more a catharsis for me than anything. That being said, I must be handling and coping with my emotions better these days. Or maybe weve just been too busy for me to think? In either case, its been over 3 months since you last heard from me, so I am prepared to give an update on our hero and villain, as well as the cast of remaining characters in our play of life.
Hero=Cash
I could almost stop there. He is one. He always will be. He defines it, as far as I am concerned. What an amazing little boy he is. So full of laughter and smiles, surprises and curveballs. He continues his therapy 3-4 times per week and always makes his doctor appointments on time. Meanwhile he meets his therapy goals and throws in the occasional "Dadda" or "I bubba" for good measure. He is just now beginning to roll over unprompted, and weve found him on his back a number of times when he left him on his stomach. He hasnt started crawling, or rolling back to front, but his head control and sitting up is coming right along. Long road ahead, but he keeps putting the proverbial foot in front of the other. He makes me proud.
The oxygen is completely a non-concern at this point, though weve added weekly breathing treatments for the slight wheezing he has on occasion. His appetite is undoubtedly Franek. The boy could chew through a bamboo prison I kid you not. Oh, and while speaking of chewing, he has three teeth on the bottom! The tops are not quite there. Preemies are known for having "out of order" teeth ruptures. Stage 3 foods are the staple now with an occasional wafer/toast. The diapers are filling as quickly as his gut.
He has the most beautiful eyes I've ever seen. They speak to me like the blue waters of Roatan. Calm, yet with purpose; Cash can stare a hole through you. I literally get hypnotized at times. His disposition is first rate, and he has avoided any colds so far. RSV shots are on the docket to assist in that venture. His hair is coming in great on top, even long. The back, not so much. Until he sits up on his own, the back of his head will likely not grow much.
It is important to note that he is officially a world traveler! He has now visited two foreign countries and survived a cruise. Those who know us well can attest to the seriousness with which we take travel, so this was a blessing for him to not only join us, but enjoy and tolerate it well. One more blessing to count for sure.
Villain=CP
Its here, its not going anywhere, but it wont consume us anymore than it has. Our new normal includes this barnicle of antagonistic bullshit(Breathe Matthew). However, it does not and will not define Cash or us. Its kind of like having to take work with you on vacation. You know its there. You have to deal with it. How and when you deal with it is up to you, just do yourself a favor and get it done while most others are sleeping so not to disrupt the family time. Get it? Fortunately for us, we love our partners(therapists, nurses), so their visits arent always so clinical. We talk family, politics whatever. Taming the CP is the goal. You cannot kill it. There will never be a day that goes by that I won't think "My son has CP" or "Remember, Cash has a different race to run".
--Whiskey break--
Ok, back. Like I was saying, Cash's differnce is what makes him special. His being special is what gets me through the day. Its an odd position, but one that somehow remedies itself when you allow your head to run the full circle. Its when I stop half way around the bend that I get in trouble. Interestingly, right now anyhow, Cash doesnt seem to mind his foe. He laughs in its face, farts then rolls over and says "I bubba!" How can I get upset over that? I can't.
Heroine(s)=Savanah/Kimberley
I could almost always pair these two up, and even more so now as Savy grows up. She is her mother, no doubt. Not just in looks, but in mannerisms, thought process and attitude. Spittin' image for sure.
Both are amazing with Cash, but lets start with Sissy(Savy).
Sissy got her name by being the big sis. We call Cash, Bubba; Savy is called Sissy. I know what you are thinking, "Somebody likes Urban Cowboy". That was actually an after thought, but I'll take it. Great flick. Savy is doing very well in school, keeps her room decent and takes a shower at least 3 times a week with a little coaxing. I don't understand her avoidance of the shower, cuz as soon as she gets in she doesnt want to get out. Tolstoys War and Peace could be read faster. I'm not kidding, we have to kick her out after 30-40 minutes. We've listened in and have discovered she turns into the director for any given Disney production when she is in her aquatic office. I attribute 30% of our water bill and 15% of the electric bill to her thrice weekly cleaning sessions. We have seen a slight up tick lately in frequency of showering, so the average may be closer to 4 times weekly. Hopefully by the time she hits 5th grade we can count on a near daily occurence, however I am concerned for our pocketbook if that happens.
Speaking of clean, Kimberley maintains her squeaky clean image. Still chugging along growing her business while just as effectively keeping both myself and Savy in line. Her travel schedule has settled down a bit as of late, but for a couple months it seemed she was gone at least 8 days a month. Maybe thats just in my head and its actually 4 days, but in either case, I miss her when she's gone. We are working on that, diligently.
Sticking with the Greek Tragedy theme of the play references Electra=Finances
Speaking of trying to keep Kim off the road, weve recently made several financial decisions. I'll save you the minor details but the big ones include moving, trading in my truck for a small car and a spending freeze on non-essential items. I would encourage everyone reading to call your cell phone, cable, internet and insurance companies; I did, and managed to save $300 a month! These things add up. These changes along with the big stuff have had no affect on our happiness or convenience, but in total amount to tens of thousands a year. We now save more than we spend, which is an amazing feeling. In case you were wondering, we chose the Dave Ramsey method to do this, though I made a couple modifications to the program. Overall though, Dave is a great coach and his books "Total Money Makeover" and "Financial Peace" are easy to understand, direct and effective reads for those serious about a dramatic change in their financial life. We've literally saved as much in the last 6 months as we had the 3 yrs prior. It can be dramatic. The best part is, we can do more good with our savings and not feel so afraid to let more go to charity and the like. Its a great feeling. Enough with my preaching. Finances will have you kill yourself and your mother, if not careful.
__________________________For the first time ever, I just deleted 2 paragraphs of something I wanted to say but didnt. Maybe some day I will________________________________________
2012 sucked for the most part. It was a very tough year. I hope noone tries to tell me otherwise. Something like, "But look how beautiful Cash is, didn't 2012 end up great?" Blah blah blah. It sucked, and it sucked bad. I'm biting my tongue here. The first 5 months were miserable, and that followed two months of complete hell. I pray I never see another year even close to 2012, and my wish for all of you is that you never have to endure something similar. Some of you have, many of you will at some point. All I can say is, have your relationships prepared, have your heart in the right place and hold the fuck on.
I welcome 2013 with open arms, cuz if I can have 12 months close to what I've had the last 3, I'm gonna be sittin' pretty with my girls, my boy and a fruity drink on the beach somewhere.
Here's to hoping 13 is just a number! Cheers to each and everyone one of you. Happy life, happy wife, happy children, healthy bodies and tidy home. God bless you and talk to ya soon!
Pura Vida
My last post was at the end of September, easily the longest stretch without a post. This is probably a good thing, as this blog is more a catharsis for me than anything. That being said, I must be handling and coping with my emotions better these days. Or maybe weve just been too busy for me to think? In either case, its been over 3 months since you last heard from me, so I am prepared to give an update on our hero and villain, as well as the cast of remaining characters in our play of life.
Hero=Cash
I could almost stop there. He is one. He always will be. He defines it, as far as I am concerned. What an amazing little boy he is. So full of laughter and smiles, surprises and curveballs. He continues his therapy 3-4 times per week and always makes his doctor appointments on time. Meanwhile he meets his therapy goals and throws in the occasional "Dadda" or "I bubba" for good measure. He is just now beginning to roll over unprompted, and weve found him on his back a number of times when he left him on his stomach. He hasnt started crawling, or rolling back to front, but his head control and sitting up is coming right along. Long road ahead, but he keeps putting the proverbial foot in front of the other. He makes me proud.
The oxygen is completely a non-concern at this point, though weve added weekly breathing treatments for the slight wheezing he has on occasion. His appetite is undoubtedly Franek. The boy could chew through a bamboo prison I kid you not. Oh, and while speaking of chewing, he has three teeth on the bottom! The tops are not quite there. Preemies are known for having "out of order" teeth ruptures. Stage 3 foods are the staple now with an occasional wafer/toast. The diapers are filling as quickly as his gut.
He has the most beautiful eyes I've ever seen. They speak to me like the blue waters of Roatan. Calm, yet with purpose; Cash can stare a hole through you. I literally get hypnotized at times. His disposition is first rate, and he has avoided any colds so far. RSV shots are on the docket to assist in that venture. His hair is coming in great on top, even long. The back, not so much. Until he sits up on his own, the back of his head will likely not grow much.
It is important to note that he is officially a world traveler! He has now visited two foreign countries and survived a cruise. Those who know us well can attest to the seriousness with which we take travel, so this was a blessing for him to not only join us, but enjoy and tolerate it well. One more blessing to count for sure.
Villain=CP
Its here, its not going anywhere, but it wont consume us anymore than it has. Our new normal includes this barnicle of antagonistic bullshit(Breathe Matthew). However, it does not and will not define Cash or us. Its kind of like having to take work with you on vacation. You know its there. You have to deal with it. How and when you deal with it is up to you, just do yourself a favor and get it done while most others are sleeping so not to disrupt the family time. Get it? Fortunately for us, we love our partners(therapists, nurses), so their visits arent always so clinical. We talk family, politics whatever. Taming the CP is the goal. You cannot kill it. There will never be a day that goes by that I won't think "My son has CP" or "Remember, Cash has a different race to run".
--Whiskey break--
Ok, back. Like I was saying, Cash's differnce is what makes him special. His being special is what gets me through the day. Its an odd position, but one that somehow remedies itself when you allow your head to run the full circle. Its when I stop half way around the bend that I get in trouble. Interestingly, right now anyhow, Cash doesnt seem to mind his foe. He laughs in its face, farts then rolls over and says "I bubba!" How can I get upset over that? I can't.
Heroine(s)=Savanah/Kimberley
I could almost always pair these two up, and even more so now as Savy grows up. She is her mother, no doubt. Not just in looks, but in mannerisms, thought process and attitude. Spittin' image for sure.
Both are amazing with Cash, but lets start with Sissy(Savy).
Sissy got her name by being the big sis. We call Cash, Bubba; Savy is called Sissy. I know what you are thinking, "Somebody likes Urban Cowboy". That was actually an after thought, but I'll take it. Great flick. Savy is doing very well in school, keeps her room decent and takes a shower at least 3 times a week with a little coaxing. I don't understand her avoidance of the shower, cuz as soon as she gets in she doesnt want to get out. Tolstoys War and Peace could be read faster. I'm not kidding, we have to kick her out after 30-40 minutes. We've listened in and have discovered she turns into the director for any given Disney production when she is in her aquatic office. I attribute 30% of our water bill and 15% of the electric bill to her thrice weekly cleaning sessions. We have seen a slight up tick lately in frequency of showering, so the average may be closer to 4 times weekly. Hopefully by the time she hits 5th grade we can count on a near daily occurence, however I am concerned for our pocketbook if that happens.
Speaking of clean, Kimberley maintains her squeaky clean image. Still chugging along growing her business while just as effectively keeping both myself and Savy in line. Her travel schedule has settled down a bit as of late, but for a couple months it seemed she was gone at least 8 days a month. Maybe thats just in my head and its actually 4 days, but in either case, I miss her when she's gone. We are working on that, diligently.
Sticking with the Greek Tragedy theme of the play references Electra=Finances
Speaking of trying to keep Kim off the road, weve recently made several financial decisions. I'll save you the minor details but the big ones include moving, trading in my truck for a small car and a spending freeze on non-essential items. I would encourage everyone reading to call your cell phone, cable, internet and insurance companies; I did, and managed to save $300 a month! These things add up. These changes along with the big stuff have had no affect on our happiness or convenience, but in total amount to tens of thousands a year. We now save more than we spend, which is an amazing feeling. In case you were wondering, we chose the Dave Ramsey method to do this, though I made a couple modifications to the program. Overall though, Dave is a great coach and his books "Total Money Makeover" and "Financial Peace" are easy to understand, direct and effective reads for those serious about a dramatic change in their financial life. We've literally saved as much in the last 6 months as we had the 3 yrs prior. It can be dramatic. The best part is, we can do more good with our savings and not feel so afraid to let more go to charity and the like. Its a great feeling. Enough with my preaching. Finances will have you kill yourself and your mother, if not careful.
__________________________For the first time ever, I just deleted 2 paragraphs of something I wanted to say but didnt. Maybe some day I will________________________________________
2012 sucked for the most part. It was a very tough year. I hope noone tries to tell me otherwise. Something like, "But look how beautiful Cash is, didn't 2012 end up great?" Blah blah blah. It sucked, and it sucked bad. I'm biting my tongue here. The first 5 months were miserable, and that followed two months of complete hell. I pray I never see another year even close to 2012, and my wish for all of you is that you never have to endure something similar. Some of you have, many of you will at some point. All I can say is, have your relationships prepared, have your heart in the right place and hold the fuck on.
I welcome 2013 with open arms, cuz if I can have 12 months close to what I've had the last 3, I'm gonna be sittin' pretty with my girls, my boy and a fruity drink on the beach somewhere.
Here's to hoping 13 is just a number! Cheers to each and everyone one of you. Happy life, happy wife, happy children, healthy bodies and tidy home. God bless you and talk to ya soon!
Pura Vida
Friday, September 28, 2012
Breathtaking...
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
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
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
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