Summer Camp

November 30, 2018

I’ve heard of parents dropping their kids off at Summer camps – maybe an adventure camp, computer camp, swim camp, or sports camp…ours is a bit of a different story….

It may seem a bit strange that I write about a Summer camp experience in late November, but I thought I’d share what that was all about – and, frankly, I feel it might be useful to also share the post camp experience.   When I signed our son up for a bimanual therapy camp at a large university in New York City, I knew it was a full commitment for me, as well.   It was far enough away that we needed to find somewhere to stay in the city.  The camp was free, but the stay was quite an expense.  I actually mulled it over for a couple years because I anticipated large challenges – I would also be going alone with our son and his usual supports at home, and it would require hard work and commitment from our son (who is not always so cooperative when pushed to try harder).  The hope was that our son’s participation in the three week therapy camp (& study) for kids with cerebral palsy and hemiplegia would enable our son to gain better use of his more affected side.  Our main goal was to give him the ability to safely hold on to both handhelds of his walker, and apply that to other activities (he plays sled hockey so using another stick in hand would be beneficial).  Additional goals were to more correctly use utensils when eating, taking his shirt off independently, and pulling himself up while holding on with two hands.   We didn’t have high expectations going into the camp.  We really felt that he might just get closer to these goals.

There was no shortage of pre-camp drama.  After making the commitment to go and arranging hotel stays for three weeks, there was an obstacle.   Attending the camp was contingent upon my finding a couple of specialists for second opinions over a cancer scare that came up from a routine screening for myself in the weeks just prior to camp. After an ultrasound, more X-rays and an MRI in the week ahead of camp, I was cleared to wait another three months for another ultrasound, rather than an immediate biopsy.  I was so grateful for the prayers received to this end from a group of wonderful ladies.  I really wasn’t sure until just days prior to leaving for the camp that we would attend.  I realized after my MRI was scheduled that it was on the exact day of my mother’s birthday.  She passed away from cancer 14 years ago.  I’ve recently been cleared for re-screening in 9 months.

After this green light, my son and I checked into a hotel in Yonkers, NY in late June just days after he graduated from the 5th grade.   The camp began and ended with a functional MRI of his brain (which means he had to be still and awake).  We had to cross town for the MRIs.  Unable to rely on subways, cabs or buses we made our way in rush hour traffic in our modified van hoping to find a parking spot on the streets of the city since most parking garages at the egress or ingress will cause our already lowered van to ‘bottom out’.  Parking, an otherwise minor issue for most people, was a major issue for us in the city.   I brought his walker to camp where his therapists would work with him on holding on as he walked.   I left the walker at camp for the duration of the camp as the equipment for our 12 year old is just large enough to make it very difficult to fit both his wheelchair and walker in the van at the same time.  This required me to walk and bathe and transfer our son without his equipment at the hotel and elsewhere.  I also developed costochondritis in my chest, in part, from the daily lifting, transferring, and care needed over the Summer months.  I am still recovering but making improvements, and gratefully functional enough to care for our son at home.

Then, there was more drama.   Most of our son’s time in camp was spent out of his wheelchair, working on core function and bi-manual tasks (which included fun games and activities).   I waited in the lobby to assist with transfers and toileting.  As the staff became a bit more comfortable with him, I walked around campus never more than a few minutes away.  When our son fell on his head on the third day of camp, I rushed him to the nearest ER.   With initial symptoms of vomiting, headache, and sleepiness, we took a four day hiatus.  Our son made a quick recovery over a long weekend home after his fall.  We had an unusual heat wave that weekend, and our air conditioning failed at home so I was glad to get back to the hotel the night prior to returning to camp.   When we checked in and made our way to the room on the fourth floor, it was actually hotter than home since there was a sprinkler incident over the weekend and the air conditioning had also malfunctioned at the hotel!   What luck.  So, we were reassigned to another hotel.  Camp went on through the July 4th holiday.  Our son worked an extra hour per day to make up for time (7 rather than the usual 6 hours per day at camp).  I would wait nearby or in the lobby as I was on call for transfers and toileting again.  When my husband visited on the eve of July 4, we discussed how we would get our son to assist with taking his shirt off in preparation for bedtime.  As we were discussing how to get him more involved in the process, he proceeded to take his shirt of in about 12 seconds!  We had never seen his motivation to do this before, and we were speechless for a few moments.  Suddenly, we had a whole new appreciation for what our son could and would accomplish at this camp.  In the ensuing weeks, our son held onto the right handheld of his walker longer and longer in therapy camp.  While his handhelds were actually removed from his walker at school prior to the camp, he is now able to hold onto his handhelds with two hands, and will hold on with the affected hand and let go with his ‘good’ hand periodically!

During this camp, I admit I was feeling sorry for myself as most other parents were able to leave the building and have a block of time to themselves without the need for a phone call to assist with their child.  It was unfathomable to me that some parents would go home during the day and return to pick up their child.  There were times I joined a small group of moms for coffee in the building, until I would get a call to return to the program for a toileting need.  A couple of wonderful ladies also came in one day to visit me at the camp and have lunch (the same ones that were praying us through all the drama before the start of the camp, as well as our son’s progress through camp).  I was so grateful for their support.  Our son aced both MRIs.  I really thought this would’ve been the hardest thing for him to do factoring in his spasticity and the patience of a 12 year old in keeping still for the tests.  He was cool as a cucumber in returning to camp after his fall.  He worked hard and cooperatively (so far as I know) with the therapists.  I really felt that he handled this camp far better than I did.  Our son’s abilities far exceeded our expectations for him.  When we returned home, we increased the amount of time spent walking in his walker and using the techniques he learned at camp.  It would continue to be important to do that so he wouldn’t lose the skill.  Today, he is still walking with both hands on the handhelds, and I’m grateful we completed the program.

Would we do it again?  More drama?  Like we need more of that?  Someone asked me recently if we would do this kind of camp again.  I’ve said that it would only be possible if I had someone else with me to help.  In saying this, I realize I have put life on my terms, and I put God and all the prayers in a box that could only be opened under my own conditions.  The fact is we made it to camp, and our son accomplished way more than I imagined – we endured, and God is so faithful and He hears the prayers of His people.   And, when we place our trust in Him, we never go it alone.  This experience was yet another reminder to me that “I can do all things through Christ who gives me strength.”(Phillipians 4:13).

 

 

 

 

 

 

 

 

 

 

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Funny Stuff

April 24, 2018

I am pretty sure God has a sense of humor.   We were created in His image (Genesis 1:27), so it must follow that if we have a sense of humor then so must our Creator.  Our youngest child, who has a physical disability, happens to be our most physically active child.  He has a penchant for fast cars and boats, high speed trains, sled hockey, campouts, hikes, field day at school, field trips, playing for hours in the surf at the beach (while his dad holds him up), and ‘running around’ in his motorized wheelchairs.  He has an indoor and outdoor motorized chair.  Most people charged with caring for him have given up trying to control the speed on his wheelchair.  It’s of no use – he just overrides and goes fast.   When one of his teacher’s commented to me about his fast driving at school – I recommended that the other children be mindful of John.  After all, I have witnessed other children passing by in front of him very closely (almost as if he wasn’t there).  I wouldn’t recommend doing that.  Once, when John met one of his new teachers – who he observed wearing open-toed shoes – he told her that she ought to change her shoes just in case he accidentally runs over her toes!

Keeping up with our youngest will be a challenge as he physically grows, and we grow older.  We repeat ourselves quite a bit with him when it comes to things like caregiving needs that he could try harder to accomplish himself – but is completely comfortable with us providing.   I change his clothing while he is lying in bed.  I have him ‘step on the gas’ to push his foot through his knee-high socks before placing his ankle foot orthotics on (which run up to below his knee).  Because he is growing so much now, it is difficult to put his pants on all the way up to his waist when he is lying down.  I ask him to help but he just stares at the ceiling and doesn’t mind at all that his pants are not pulled up, or his shirt not on all the way.   I have him ‘bridge’, which is something he is learning in therapy to hoist up his bottom for few seconds when he is lying down, so I can get his pants up further.  He would rather hold the water bottle that I use to spritz and straighten out his hair in the morning to squirt me while I get him ready.  I pretend that there is a warning on the bottle which says that children under 15 can’t use it.  Will he try to comb his hair?  Nah.  We need to work on that one.  When I’m bending down to buckle his feet into his footplates on his wheelchair, he would like to tap-tap-tap me on the head rather than help.  I now have him unbuckle at least two of the four buckles.  He can brush his teeth, but he would rather spin the brush outside of his mouth so that tiny particles of toothpaste splatter the area.  When we’re doing homework together, he would rather I read his homework.  I am pretty strict about him reading aloud, but when I sense he needs some help I’ll alternate reading sentences with him.

Our youngest can be quite strong willed and determined when he wants to be.  When we tell him that God wants children to obey their parents, he likes to make up his own funny rule.  His determination is one of the cue’s we use to keep encouraging him to participate in his daily needs where he is able.  He receives physical, occupational, speech and vision therapies each week.  This Summer, he will also be participating in a three week, daily intensive camp to work on strengthening his bi-manual skills.

 

Darkest Moments

April 12, 2018

I’ve lived long enough to know it’s not a matter of whether you have trials, but when.    In my half century of life, I’ve experienced quite a few trials and challenges – both of my parents deaths, being the wife of an active duty service member, serious health challenges, special needs parenting, relationship challenges, building our own wheelchair accessible home.  I know that I haven’t been promised a trouble free life.  It’s expected.  As a Christian, I know that scriptures confirm it.  Jesus’ life, Job’s life, Paul’s life, and the list goes on and on….Some say that challenges prepare you for what’s ahead…and I sometimes imagine in the face of a tall challenge that I would rather like to find a hiding place free from the unpleasant, the pains in life, the challenges, and fears that seem to overwhelm at times.  I imagine myself with a blanket on my favorite couch, reading a good book, the cares of the world away from reach, just basking in a moment of peace.  Maybe sounds of the ocean, seagulls, and kids playing outside my imaginary home near the beach.  Just for a few hours, no one needs anything.  I imagine the sun shining outside.  I don’t like darkness.  Anyone with me?

Taking a step outside of what we are comfortable with is hard.  I have had to work at overcoming my own anticipatory anxiety in certain situations – the fear and “what ifs” that try to invade my thoughts.  The white knuckling.  We can easily create a life around our fears and challenges, or we can face them, sweaty and hearts pounding until we’ve gone through it knowing that we can be okay, and the fear starts to lose its power and we find joy in life – even in the challenges.  Joy in suffering, imagine that?  We need to lean on others for support, and I also lean on God’s promises hard in life’s challenges, wanting my way but knowing that He has a better plan than I do.   I have friends and family whom I love deeply, that have struggled too.  There have been struggles with intense grief over the deaths of close family members years past their leaving this earth, intense caregiving needs, cancer, undiagnosed disabilities, loss of a child, loss of a spouse, loss of a sibling, loss of parents, divorces, the effects of serving in war, agoraphobia, claustrophobia, childhood abuses, alcoholism, depression, chronic pain, anxiety, suicidal thoughts, obsessive compulsive disorder, early-onset Parkinson’s disease, dementia, deep insecurities, and more.  Try to find a person without challenges on Earth, and you will be on a deserted island!  Thorns in our side come in many shapes and sizes, and some of us are blessed with more than one!

I will never forget this.  Many years ago, during a time that I was struggling with some intense anxiety I recall pulling into a parking lot at the grocery store where I noticed (hard not to) a car parked in front of me with a license plate that read  “Y Worry”, and really large rear window stickers (the kind that you can’t miss and you can be several cars behind to see) that said in bold letters “Perfect love never fails” and “Trust Jesus”.  Boy did I need that reminder!    I never saw that car before or again.  I believe that was meant for me at that moment.   There just weren’t many other cars in the lot.  I love 1 John 4:18 which says “There is no fear in love.  But perfect love drives out fear….”  I believe that God reaches us right where we are.  In the parking lot or in traffic, or elsewhere.  In a jam – literally.   Notice the words “drives out fear”.   Following His truths (in this case behind a car!) is the only way I have found true peace.

This one from Psalm 94:19 just moments ago when I glanced at my Bible App verse of the day – “In the multitude of my anxieties within me, Your comforts delight my soul.”  I recall how we were trying to figure out how to bridge the move to our new wheelchair accessible home in time for schools to begin, manage loans to be paid, future expenses to consider, and another house to sell.  I ran into a friend in the parking lot of a nearby grocery store – who happened to be looking for a house.  During Hurricane Sandy, with widespread power outages, we had invited their family over to do laundry and get warm – we were one of the fortunate few blocks of homes in our neck of the woods to have had power.  They remembered our home and made a reasonable offer.  With moving boxes lining our spaces high, we sold our home to these friends with no realtor, no expectation of selling a home during the winter months, and no disagreements.   We had our house listed with a realtor twice in the years prior to building our new home, without success.  I could see how God worked this out, even after my husband initially said we were definitely not looking for a house in the town we are now living in (my husband was later adament about building our home and being the general contractor – he never built a house before and had another full-time job!).

One of my favorite verses is from Proverbs 3:5-6.  “Trust in the Lord with all your heart and lean not on your own understanding.  In all your ways acknowledge Him, and he will make your paths straight.”  Another favorite is Psalm 91.  I recommend reading that one all the way through.

 

 

The Will

April 9, 2018

We were delighted when our youngest son starting speaking.  In addition to the physical therapies and needs, the first few years of his life he had difficulty speaking words and would resort to crying out his requests, while we attempted to figure out what it was he wanted, or didn’t want.  He cried so much in the early years, that I thought we would not survive it!  We would have tried sign language, but he couldn’t use his hands well enough.  At about four years of age, our son starting uttering words and sounds that made sense to us.  We thought it cute when he spoke words that we normally wouldn’t permit from a four year old.  So, he would repeat those again.  We had to hide our chuckles, lest we have a child with a disability and behavioral issues.  When we couldn’t understand his words, he would get very frustrated and keep repeating himself until his frustration turned into crying again.   We took our son to a clinic to be evaluated for the latest communications device, and our school district purchased a very expensive device for his use at school.  While our son understood how to operate it, he really just played with it at home.  After many speech therapy sessions, changes to his classroom environment (he was initially placed in a class where very few children spoke), divine mystery (either answered prayer or just a delay in his physical development), and sheer determination on his part – speech developed and words and sentences came.  The very expensive communications device was left behind, and his therapies and path to developing speech continues.  He can speak a full breadth of language at his 12 years of age, though he will often need interpretation with others who don’t know his pattern of speech as he leaves out some letter sounds and word endings.

Our youngest has different challenges now as a pre-teen, testing the parent boundary line often and willingly.  When we say no, he is all about yes – and vice versa.  When we want him to stand up for a transfer to do something he wishes not, he folds down to the ground – gravity weighing heaving on our backs.  When I try to protect him from turning into the road on an uneven surface on the sidewalk next to the busy road, he stops short and loudly tells me  – with perfect clarity – to let go of his powered wheelchair.   When he taps the table loudly with his large fork to play drums with one hand at the restaurant and I ask him to stop, he continues.  I look at his good hand holding the fork and I want to turn and hide my chuckle as I am delighted at his ability to hold the fork, when years ago he couldn’t.  When I ask his hands to be quiet and he effortfully sneaks to extend his severely affected right arm and hand, I want to turn and smile.  When he is in physical therapy and he doesn’t feel like participating, I suggest an earlier bedtime and he perks up.

I know there will be other challenges ahead in the teen years, and I want to be that woman in Proverbs 31:25 who laughs at the days to come.  I’m still a work in progress!  Recently, I was reminded that God made our will stronger than our emotions.  When our emotions seem stronger, our life is really out of balance.  And, our children will learn from our example.  Recently, I had to make a choice to push through my fear of heights when travelling by car over the Hungry Horse dam (one of the largest in the world) in the Rockies while on vacation.  When I hesitated, my son also quickly reacted and said he wasn’t going either.  So we went over the massive dam by car.  When I feel fearful, anxious, angry, or even exhausted I am comforted to know that I have the power to override that with my will and choices so that my son can know he has a choice, too.  Often, it’s a daily battle of the will.

I am thankful for God’s grace and mercy and patience.

 

Rescued

March 14, 2018

Today I was driving in the countryside on a two lane road, taking in the beautiful scenery when my thoughts flashed back to another two lane road I was driving on a couple of months ago.  I was en route to my husband’s office to have a lunch with him when I saw a very large construction truck traveling down the opposite side of the road.  It had very large wheels – I recall three to four sets of two large wheels.  As the truck was just some short yards away I saw that one of those double sets of wheels was unwinding from the axle and coming away from the truck.  My first reaction was that I should pull over to the side of the road to avoid being struck by them, but I continued on past the truck.  I’m glad I didn’t pull over to the side and stop, because just after the large truck passed me by I looked in my rear view mirror and saw the two large wheels pull away from the truck and bounce large and heavy across the other side of the road, the side I was on.   My thought was that had I been there, I would surely have been crushed to death by the giant sized wheels.

As I thought of this event, I was also reminded of another situation nearly 12 years ago when my youngest was born.  I was in the doctor’s office for a routine checkup in my 31 weeks of pregnancy when my doctor told me I wouldn’t be going home that day.  I was sent to the hospital and admitted for preeclampsia at nearly 32 weeks into my pregnancy.  My blood pressure was very high, and I was placed on drugs to keep my body from having seizures, and steroids to strengthen the lungs of my still developing baby.  Shades in the room were drawn and the room darkened as part of the effort to keep my blood pressure from getting too high.  I had double vision, and didn’t have the strength to stand up.  I didn’t know much about preeclampsia at that time, but I knew that it was too early to deliver a baby and it would become necessary for his life and mine.  Somewhere in the next 48 hours prior to or possibly during delivery, and unbeknownst to doctors, nurses and myself our son suffered a brain hemorrhage, causing hydrocephalus and our son’s diagnosis of cerebral palsy nearly a year later.  I was induced after two days of steroid injections, and our son entered the world at 3 lbs. 11 oz.  We were in a community hospital with a special care nursery that could care for babies born from 32 weeks to full term.  It was only through a routine scan of babies heads (we were told typically reserved for the very premature babies at larger hospitals) that the injury was discovered in the days following our son’s birth.  He would be hospitalized for 5 1/2 weeks.  (In most cases, preeclampsia clears up after delivery; however, my blood pressure continued to be elevated for at least 6 months postpartum.  Recovery was slow, and the challenges we faced with our son’s condition were just beginning.)

In all these situations, I had very little control.  For someone like myself that likes to have control in situations, these are hard and difficult moments.   There have been other incidents where I believe God spared my life, but never so tender as the one where my son and I were both spared.  In both developing and developed countries, preeclampsia is a major cause of death in mother and child.     For those that have gone through losses such as these – I am heartbroken, and keenly aware of how fortunate we are.

While I don’t understand what I am not in control of, I am keenly aware of how quickly life can change and how I need to lean on the God of all comfort (2 Corinthians 1:3-4), the giver and taker of life (1 Samuel 2:6), and the source of my salvation (John 3:16).

 

Starting the day with a song

March 12, 2018

Well, we dodged another snow day today; however, tomorrow may possibly bring a school delay with 2-3 inches forecasted for tonight into tomorrow morning.  Our son woke us up in the middle of the night last night requesting some water.  Usually, it’s a pillow adjustment or need for an extra blanket.  The winter air brings dry heat and throats in the middle of the night.  My husband heeded the call for water.  I felt it too, and went for a drink of water.  It was still dark and I try not to look at the clock, otherwise I will be up pondering the time left to makeup for sleep and I will be up for an extended time.  The interrupted sleep creates a ripple effect.  My husband didn’t get to his morning run, I didn’t wake up before the alarm to enjoy some quiet reading time, and with the daylight savings time change this past weekend our son was just extra tired.  This morning as I held my son to assist him out of bed, he dropped to the floor in my arms in his tiredness.

I don’t know why I sometimes have a song in my head that I haven’t heard in awhile, but this morning I had a song on my mind.  As I transferred my son from toilet to wheelchair, I sang a few lines of “Give Me Jesus” (to listen to a version so beautifully sung by one of my favorite Christian musicians, Fernando Ortega, here is a link:  https://www.youtube.com/watch?v=qjTxnYiTAa8).  My son listened and my heart was glad.  After he got onto the bus, my phone lit up with the Bible App verse of the day from Colossians 3:16:  “Let the word of Christ dwell in you richly in all wisdom, teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord.”

God gives us the grace we need for each day.

Snow Days

March 11, 2018

It’s nearly Spring, but the weather around us is turbulent with some sunny, warm days, contrasted with other very snowy, blizzard-like days with lightening and thunder to boot.  With changing weather and storms, some days bring such a vortex of winds around our home that we need to secure chairs, benches, filled garbage cans, etc., that have been left outside for the winter from blowing about in the 40-60 mph gusts.  Our power went out briefly during a rainstorm two weeks ago.  We made it through most of the winter without days off from school, but this past week there were two days off in a row.  Our son was delightfully aware of the potential for no school the night before the last nor’easter, asking repeatedly if he would be off the next day.   The call came through this night from the school district already cancelling the next day of classes.  I let our son know just as he was ready to have lights off, and he smiled – eyes big with his ideas for the next day – the opportunity to watch and play alot of car videos, Xbox, and computer games.

The needs to be met for the day ahead were already calling me, too, as I planned to fill in the day with some of the un-fun things for him like therapies, reading, bathing, and school work. I felt some of the weight of the day ahead, knowing that I would need to do more lifting, washing, and assistance with standing and walking and toileting with my son, in addition to clearing snow and cooking ahead of any potential power outage that leaves our stove and oven unable to function.  Thankfully, we do have minimal ability to power up some essential items like heat and refrigerator and some electricity to keep the charge on wheelchairs and phones.

As I thought about the additional work ahead, I remembered the excitement of my own days off from school, and wanted my son to also feel that excitement.   I didn’t want him to see my consternation and irritability as I handled the list of things to do.   As I was reading a daily devotional last week, I was reminded to take care of the weak (1 Thessalonians 5:14).  My son needed my help.  1 Thessalonians 5:14 also instructs us to be patient with everyone.  As I evaluated my thoughts and my heart, I was reminded of my job for these days and others – to love and care for this child, and be patient with him.  I was thankful for this timely reminder in the face of sometimes rapid fire requests of needing drinks, snacks, the IPad, and other things during the snow days.