Wednesday night David had a severe headache again. I tried the new pain medication the neurologist prescribed. I tried peppermint essential oil. I tried almost every PT headache treatment technique I know (and I've treated a LOT of people with headaches). NOTHING even made a dent! I was so angry and frustrated. We've been trying so many different medications and treatments for David's headaches and nothing is working. I cried out to God in desperation (and probably a bit of unrighteous fury and frustration) to take David's headaches away. He has so many challenges, why this incurable, almost constant pain too? God didn't take his headache away in that moment, so off to the ER we went, where they are getting to know us by name. It was an unusually busy night at the ER with several critical patients, so a person with a bad headache that's becoming known as a regular visitor gets put on the bottom of the list. So we waited for several hours and then he got doped up on the regular dose of morphine. That just made him dopey but no pain relief. Who doesn't get pain relief from morphine!? So they gave him another half dose. That did the trick. We got home at almost 1 am and I heaved my husband into bed. I was hoping this was the beginning of a restful night. Wrong. I was woken up about every 20-30 minutes by a delirious, anxiety-ridden husband who was, come to find out, having an allergic reaction to morphine. Great. Back to square one. Can't even take him to the ER for headaches now because that's all they have to give him. It's been 4 days without a headache for David. I don't know what's happened but God has given him a gift of these beautiful headache-free days! Anyone who has experienced debilitating headaches for months on end will know what a gift these last few days are.
I believe that God has given me a promise from the beginning of this journey that David will have a quality life and purpose and live to see "...the goodness of the Lord in the land of the living." (Psalms 27:13), not just a promise of a new body in eternity. My faith is falling short as I wander around in this "wilderness" especially when the effects of the brain injury make progress negligible. The lack of judgement about safety and lack of understanding about how things that aren't fun or may hurt may help to reach long-term goals, frustrates progress so easily. I find myself longing for my "Egypt" instead of what God has for us today and in the future.
What is my "Egypt"? Everything that destroys my contentment in Now and undermines my faith in a big, powerful, amazingly wise God. I need faith like Caleb and Joshua that God will conquer the giants that look so incredibly big and impossible to beat. Pray for us in our spiritual, physical and emotional battles against giants every day.
Sunday, March 15, 2015
Wednesday, February 25, 2015
And This is the Victory...Faith
I haven't written in awhile. I've been meaning to write but somehow haven't found the right words or inspiration. I'm not sure I have it even now but I feel like I should share some things. Pardon the non-eloquence...
There's this verse in I John that I've been mulling over. It just amazes me. I think about how Jesus overcame the world and if He can overcome death and the world and has given us the Holy Spirit (indwelling believers). If He has done all this, do we not have amazing power through Him, as Christians? So here's the verse to satisfy your curiosity: "For whatever is born of God overcomes the world. And this is the victory that has overcome the world -- our faith." I John 5:4 Wow. Seems so simple...until you have a brain injury that wipes out your moral compass and destroys any control you had or victories you thought you had over sin in your life. It takes away any initiative to do right, to make good choices. You see, the frontal lobe is responsible for giving you control over the stuff the comes from the depths of your heart out of your mouth or actions. When it gets damaged as severely as David's did, it becomes a playground for Satan to attack weaknesses. BUT, David has God's power available to him to overcome -- even medically impossible injuries to the brain.
I will not go into explicit detail as to David's struggles but I will say that we've been begging God to give him victory because it's destructive. He's been struggling and praying, struggling and praying for a long time. Finally, David initiated a move in his life that makes this problem almost non-existent. This is a miracle!!
On a different note, David's progress has kind of slowed way down. We don't get real exciting bursts of progress lately. We took him off his spasticity medication, hoping he didn't need it anymore but I'm starting to think he does need it. :( His walking isn't doing very well. His therapies decided to taper off for awhile because he wasn't motivated at all and wasn't really making much progress. We're still doing things at home. My latest tactic is to try "working from the ground up". Sort of a NDT (neurodevelopmental technique) approach. So I'm starting him like a baby develops, starting getting him stronger on his stomach, lifting his head and trunk up, propping himself up on his elbows, pushups, etc... on up the chain. Right now we're working on balancing in quadruped (hands and knees position). He did really well today and was able to balance there for about a minute almost by himself. Since I've changed the caregiver schedule so we don't have a caregiver at night, I do David's cares at night. We're hitting dressing/undressing hard at night. He's improving. It's challenging doing everything with one "good" arm and poor balance but it's getting better and I think he's gaining some confidence. Lately, the changes I notice are subtle. His smile is wider and more even (he's got his goofy cheesy smile back!). He's starting to "get" things and laugh at subtleties more and more. He's getting better at thinking outside his little bubble and realizing other people have needs and desires that might be different than his own. He's getting better at knowing how to engage strangers with more varied and appropriate questions and conversation and come up with more novel, realistic ideas or problem-solving tactics that actually work. (To give to you an idea of how this has improved...last year about this time, when asked to problem-solve, he couldn't, period. He would just say, "Cry for help!" no matter what or how simple the problem was.) David is still having bad headaches daily. We've tried a whole gamut of medications, supplements, oils, etc... to try to relieve them, at no avail. We've started him going to a chiropractor the last two weeks. Today, he had 4 HOURS of no headache after his adjustment! His night pain medication worked better too.
A beautiful bouquet from my honey. :) Thoughtful and generous he is. :)
There's this verse in I John that I've been mulling over. It just amazes me. I think about how Jesus overcame the world and if He can overcome death and the world and has given us the Holy Spirit (indwelling believers). If He has done all this, do we not have amazing power through Him, as Christians? So here's the verse to satisfy your curiosity: "For whatever is born of God overcomes the world. And this is the victory that has overcome the world -- our faith." I John 5:4 Wow. Seems so simple...until you have a brain injury that wipes out your moral compass and destroys any control you had or victories you thought you had over sin in your life. It takes away any initiative to do right, to make good choices. You see, the frontal lobe is responsible for giving you control over the stuff the comes from the depths of your heart out of your mouth or actions. When it gets damaged as severely as David's did, it becomes a playground for Satan to attack weaknesses. BUT, David has God's power available to him to overcome -- even medically impossible injuries to the brain.
I will not go into explicit detail as to David's struggles but I will say that we've been begging God to give him victory because it's destructive. He's been struggling and praying, struggling and praying for a long time. Finally, David initiated a move in his life that makes this problem almost non-existent. This is a miracle!!
On a different note, David's progress has kind of slowed way down. We don't get real exciting bursts of progress lately. We took him off his spasticity medication, hoping he didn't need it anymore but I'm starting to think he does need it. :( His walking isn't doing very well. His therapies decided to taper off for awhile because he wasn't motivated at all and wasn't really making much progress. We're still doing things at home. My latest tactic is to try "working from the ground up". Sort of a NDT (neurodevelopmental technique) approach. So I'm starting him like a baby develops, starting getting him stronger on his stomach, lifting his head and trunk up, propping himself up on his elbows, pushups, etc... on up the chain. Right now we're working on balancing in quadruped (hands and knees position). He did really well today and was able to balance there for about a minute almost by himself. Since I've changed the caregiver schedule so we don't have a caregiver at night, I do David's cares at night. We're hitting dressing/undressing hard at night. He's improving. It's challenging doing everything with one "good" arm and poor balance but it's getting better and I think he's gaining some confidence. Lately, the changes I notice are subtle. His smile is wider and more even (he's got his goofy cheesy smile back!). He's starting to "get" things and laugh at subtleties more and more. He's getting better at thinking outside his little bubble and realizing other people have needs and desires that might be different than his own. He's getting better at knowing how to engage strangers with more varied and appropriate questions and conversation and come up with more novel, realistic ideas or problem-solving tactics that actually work. (To give to you an idea of how this has improved...last year about this time, when asked to problem-solve, he couldn't, period. He would just say, "Cry for help!" no matter what or how simple the problem was.) David is still having bad headaches daily. We've tried a whole gamut of medications, supplements, oils, etc... to try to relieve them, at no avail. We've started him going to a chiropractor the last two weeks. Today, he had 4 HOURS of no headache after his adjustment! His night pain medication worked better too.
Thursday, January 15, 2015
"Strength for Today and Bright Hope for Tomorrow"
I've been thinking about the line from the beloved hymn "Great is thy Faithfulness" that says, "Strength for today and bright hope for tomorrow." I find it amazing to see how the Lord gives the strength needed to get through today in small ways. Some days, it's harder to see that strength but maybe it's because we are not leaning on Him hard enough to be our Strength.
We found out a few weeks ago that we have a new miracle coming to us around July 24th! The sonogram last week recorded a perfect little heartbeat thumping away. :) We are very excited to have another child join our family and give Jocelyn a sibling but are aware that it will bring extra challenges to our life. An example of the Lord's strength for me in these last few weeks has manifested itself in my parents being here for the first few weeks of the pregnancy when I was the most fatigued and not feeling great. I have been blessed with hardly any morning sickness so I've been able to function pretty normally. :)
Another way to Lord has been giving an extra boost is a shift in relationship between Jocelyn and David. For awhile now, it has been a struggle. David has a hard time controlling his grasp strength and when he goes to touch/grab Jocelyn in a "friendly" way when she walks by, he ends up hurting her by grasping her little limbs too hard and not being able to let go fast enough. Of course, she is too little to understand that daddy is not trying to hurt her, but only trying to play. She reacts with displeasure and lots of hitting and shouting. We've been trying to work on both ends because both the action and reaction are problematic. Lately, we've seen a shift to a more loving relationship between the two. Jocelyn has taken to holding David's hand and gently stroking his arm, saying, "Nice!" and actually requesting and consenting to sitting on his lap without protest!
Something we've been working on for several months has finally come to fruition. Last Friday, David got a special mount for his wheelchair that moves at several joints. It has a special attachment so that he can read books and another one for a cell phone. With his glasses, he can read his regular Bible for the first time by himself in 2-1/2 years! He also is able to text on his cell phone with a stylus and his glasses. It's so great for him to have another added way of communication and allows him to work on visual attention and fine motor skills. I see it as a great tool for him that will open more doors for him. He's also puttering around by himself in his new bright orange wheelchair with his right arm and leg propelling him.
With these new avenues of independence comes with a need for added supervision. Pray for strength and wisdom for me and others who work with David to know how to "nag" him appropriately to not discourage him, but still keep him from hurting himself or others.
We were blessed lately with a beautiful trip to CA. I'm including a few snapshots of our time there. :)
We found out a few weeks ago that we have a new miracle coming to us around July 24th! The sonogram last week recorded a perfect little heartbeat thumping away. :) We are very excited to have another child join our family and give Jocelyn a sibling but are aware that it will bring extra challenges to our life. An example of the Lord's strength for me in these last few weeks has manifested itself in my parents being here for the first few weeks of the pregnancy when I was the most fatigued and not feeling great. I have been blessed with hardly any morning sickness so I've been able to function pretty normally. :)
Another way to Lord has been giving an extra boost is a shift in relationship between Jocelyn and David. For awhile now, it has been a struggle. David has a hard time controlling his grasp strength and when he goes to touch/grab Jocelyn in a "friendly" way when she walks by, he ends up hurting her by grasping her little limbs too hard and not being able to let go fast enough. Of course, she is too little to understand that daddy is not trying to hurt her, but only trying to play. She reacts with displeasure and lots of hitting and shouting. We've been trying to work on both ends because both the action and reaction are problematic. Lately, we've seen a shift to a more loving relationship between the two. Jocelyn has taken to holding David's hand and gently stroking his arm, saying, "Nice!" and actually requesting and consenting to sitting on his lap without protest!
Something we've been working on for several months has finally come to fruition. Last Friday, David got a special mount for his wheelchair that moves at several joints. It has a special attachment so that he can read books and another one for a cell phone. With his glasses, he can read his regular Bible for the first time by himself in 2-1/2 years! He also is able to text on his cell phone with a stylus and his glasses. It's so great for him to have another added way of communication and allows him to work on visual attention and fine motor skills. I see it as a great tool for him that will open more doors for him. He's also puttering around by himself in his new bright orange wheelchair with his right arm and leg propelling him.
With these new avenues of independence comes with a need for added supervision. Pray for strength and wisdom for me and others who work with David to know how to "nag" him appropriately to not discourage him, but still keep him from hurting himself or others.
We were blessed lately with a beautiful trip to CA. I'm including a few snapshots of our time there. :)
Sunday, December 21, 2014
A Stained Glass Window
While baking Christmas cookies today, the thought crossed my mind that our life is like a stained glass window. That moment that David fell off that pole, our colorful, happy life as we knew it shattered to a thousand pieces. But it isn't for naught. Slowly, the colored shards are being pieced back together into another picture by the master Artist. It's painful to have them fitted back together. Sometimes the pieces don't seem to quite fit right, but then at the last moment, when it seems we can't bear it any longer, He welds in another small piece to make it a little more comfortable. We don't see the whole picture in the window yet but He has a plan and He will shine through this life too.
Last week, it seemed He was melting the glass or filing sharp edges off. Whatever He was doing was not comfortable! Long story short, about 4 doctors gave 3 diagnoses to us for reasons why David was having severe abdominal pain. After several tests, he ended up in the hospital overnight, for what ended up being a fairly simple problem that I could have handled at home, had I known it wasn't something as serious as the doctors had diagnosed in the beginning! It left us all pretty ragged, unrested and with very contemptible attitudes.
Some of the old pieces are being fitted back into our new life. It's surprising when I recognize an old piece because I've gotten so used to it being gone. Here's an example: when we were first married, David showed high esteem for my cooking and decided that I was the best cook in the world. Maybe I took pride in this a little too much because when, for the last year, he hasn't praised my cooking much and even declared it "nasty" a few times, it rather deflated my balloon. Last week, he surprised me with a comment. I told him the options at the potluck dinner at church. He just wanted what I made because it was the only dish he "trusted." This made me chuckle inside because there are lots of other good cooks in our church that he should trust his palate to. It's kind of a silly thing, but I think he thinks I'm the "best cook in the world" again.
This week has been a better week, but still has us on our toes, doing things differently or new things. David was doing some pretty intense vocational rehab testing for Monday-Wednesday. My parents were here for a couple months and took care of Jocelyn when I was taking David to therapy. In these last two months, she has turned into a monster for staying to watch David's therapies. I've decided to step back a bit for my mental health, for David to develop more independence and for Jocelyn be able to just be a regular 20-month old wild thing that doesn't have to be caged up during hours of therapy. I think it will be better for all of us.
I don't remember who I've asked for prayer about this but I asked some to pray that his new wheelchair would come before our trip to CA at the end of the month. The prayer has been answered and we are delighted to get it the day before we leave! :)
Last week, it seemed He was melting the glass or filing sharp edges off. Whatever He was doing was not comfortable! Long story short, about 4 doctors gave 3 diagnoses to us for reasons why David was having severe abdominal pain. After several tests, he ended up in the hospital overnight, for what ended up being a fairly simple problem that I could have handled at home, had I known it wasn't something as serious as the doctors had diagnosed in the beginning! It left us all pretty ragged, unrested and with very contemptible attitudes.
Some of the old pieces are being fitted back into our new life. It's surprising when I recognize an old piece because I've gotten so used to it being gone. Here's an example: when we were first married, David showed high esteem for my cooking and decided that I was the best cook in the world. Maybe I took pride in this a little too much because when, for the last year, he hasn't praised my cooking much and even declared it "nasty" a few times, it rather deflated my balloon. Last week, he surprised me with a comment. I told him the options at the potluck dinner at church. He just wanted what I made because it was the only dish he "trusted." This made me chuckle inside because there are lots of other good cooks in our church that he should trust his palate to. It's kind of a silly thing, but I think he thinks I'm the "best cook in the world" again.
This week has been a better week, but still has us on our toes, doing things differently or new things. David was doing some pretty intense vocational rehab testing for Monday-Wednesday. My parents were here for a couple months and took care of Jocelyn when I was taking David to therapy. In these last two months, she has turned into a monster for staying to watch David's therapies. I've decided to step back a bit for my mental health, for David to develop more independence and for Jocelyn be able to just be a regular 20-month old wild thing that doesn't have to be caged up during hours of therapy. I think it will be better for all of us.
I don't remember who I've asked for prayer about this but I asked some to pray that his new wheelchair would come before our trip to CA at the end of the month. The prayer has been answered and we are delighted to get it the day before we leave! :)
Tuesday, December 9, 2014
Everyday Life When You Are Married to Someone With a TBI
Everyday life is busy, just like everyone else but not like everyone else. It involves lots of phone calls, visits, and emails to therapists, doctors, nurses, and other practitioners. We never know what a day will bring forth. This year, David has been under the care of probably 20-30 different people, or possibly more.
Lately, we made changes to our caregiving schedule to consolidate cares and free up some time for family, just us time. We haven't really hardly had any "us" time in a LONG time. It puts a strain on things, because we can never talk about private family matters even at our own dinner table. It's come with it's own challenges, as it always does, but I like it. Instead of having caregivers 15 hours a day, they are here 9 hours.
I feel like a fire fighter or maybe, a babysitter/ manager would be a better description. I'm constantly having to follow up on new things we're starting such as orders, appointments, new schedules... Nothing is cut and dried. It's always refreshing when I get someone on the phone that follows through right away or does their job right the first time. For example, I had to call and/or email the scheduler for our caregivers FIVE times regarding one caregiver's schedule with David. We've been in the process of getting David a new wheelchair for FOUR months. Meanwhile, David's physical medicine doctor had to have an emergency procedure and is out of his office for an indefinite amount of time causing David's botox injections to be delayed two months. I could write a book just on the reasons that caregivers come up with to either not show up at all, be late, or be unable to fill the position after training. It's unbelievable, really.
In other ways, our life is normal. We go to church, we eat meals together, we scramble after a very active, smart 19-month old, we go out to eat, we go on walks (weather permitting), we get together with friends, we celebrate holidays with family...and we are very thankful for these things.
Things to pray for and praise for: David is still having almost constant moderate to severe headaches despite numerous drug interventions, massage, positioning and other interventions and a clear CT scan, David's walking, bed mobility, interaction with people and environment continues to slowly improve.
Lately, we made changes to our caregiving schedule to consolidate cares and free up some time for family, just us time. We haven't really hardly had any "us" time in a LONG time. It puts a strain on things, because we can never talk about private family matters even at our own dinner table. It's come with it's own challenges, as it always does, but I like it. Instead of having caregivers 15 hours a day, they are here 9 hours.
I feel like a fire fighter or maybe, a babysitter/ manager would be a better description. I'm constantly having to follow up on new things we're starting such as orders, appointments, new schedules... Nothing is cut and dried. It's always refreshing when I get someone on the phone that follows through right away or does their job right the first time. For example, I had to call and/or email the scheduler for our caregivers FIVE times regarding one caregiver's schedule with David. We've been in the process of getting David a new wheelchair for FOUR months. Meanwhile, David's physical medicine doctor had to have an emergency procedure and is out of his office for an indefinite amount of time causing David's botox injections to be delayed two months. I could write a book just on the reasons that caregivers come up with to either not show up at all, be late, or be unable to fill the position after training. It's unbelievable, really.
In other ways, our life is normal. We go to church, we eat meals together, we scramble after a very active, smart 19-month old, we go out to eat, we go on walks (weather permitting), we get together with friends, we celebrate holidays with family...and we are very thankful for these things.
Things to pray for and praise for: David is still having almost constant moderate to severe headaches despite numerous drug interventions, massage, positioning and other interventions and a clear CT scan, David's walking, bed mobility, interaction with people and environment continues to slowly improve.
Sunday, November 16, 2014
New Toy and More Progress
Later that day, he had OT and PT. Although he wasn't standing tall really good, his gait pattern is becoming more fluid and normal. I'm having some difficulties getting videos uploaded here but when I figure it out, I'll give a visual. 😄
Monday, November 10, 2014
Fish Out of Water
This last weekend, I drove 4 hours down to Milwaukee for a Physical Therapy course on shoulders and knees. I stayed at a nice hotel for a good price. A king sized bed, a large couch, bathroom and walk-in closet were all mine to enjoy all by myself. I had an absolutely quiet night in the hotel. No squishy, stinky diapered child bouncing on my head yelling "UPPEEDOOO!!!" at 6:45am or "HOOONEY! RELEASE ME! at 2am. Instead, a white fluffy comforter enveloping me in quiet, uninterrupted sleep.
For 2 days, my brain tried to sponge as much information as possible from the class -- 284 pages and 15 hours later, I might just know all there is to know about MLB players and shoulder injuries, or maybe not. I'm not working as a PTA right now but want to keep my license up just in case I need or want to go back to work, so I'm required by the state to fulfill a certain amount of hours every 2 years. I wasn't sure how to switch gears. I had no current orthopedic patients to go home and practice on. The last 2 years of my life have left me rather emotionally depleted, so I didn't have much to offer as far as making new friends or contacts. In some ways the class was exhilarating, something different from the regular day to day pace lately, but empty in other ways. I was filling my brain with things that I wouldn't be using in the near future, at least as far as I know.
While gone, I was able to facebook message David a few times. It felt really awesome to get messages from him. It was like old times, getting that little flutter of excitement in my stomach when I'd get a text or email. I've been missing that a lot. Since I'm with him 24-7, I never get to have the "absence-makes-the-heart-grow-fonder" moments.
When I got home, I got snuggles and a back rub from my honey and a bouncing, redhead shouting excitedly in the morning, "MaMA MaMA!!" and extra loves. Taking care of these two is my life and I love it. This is home, this is where I fit.
For 2 days, my brain tried to sponge as much information as possible from the class -- 284 pages and 15 hours later, I might just know all there is to know about MLB players and shoulder injuries, or maybe not. I'm not working as a PTA right now but want to keep my license up just in case I need or want to go back to work, so I'm required by the state to fulfill a certain amount of hours every 2 years. I wasn't sure how to switch gears. I had no current orthopedic patients to go home and practice on. The last 2 years of my life have left me rather emotionally depleted, so I didn't have much to offer as far as making new friends or contacts. In some ways the class was exhilarating, something different from the regular day to day pace lately, but empty in other ways. I was filling my brain with things that I wouldn't be using in the near future, at least as far as I know.
While gone, I was able to facebook message David a few times. It felt really awesome to get messages from him. It was like old times, getting that little flutter of excitement in my stomach when I'd get a text or email. I've been missing that a lot. Since I'm with him 24-7, I never get to have the "absence-makes-the-heart-grow-fonder" moments.
When I got home, I got snuggles and a back rub from my honey and a bouncing, redhead shouting excitedly in the morning, "MaMA MaMA!!" and extra loves. Taking care of these two is my life and I love it. This is home, this is where I fit.
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