in the shadows…

January 24, 2011

I usually know exactly what I am going to say.  I’ve got a title for a post and most of it finished up in my head before I ever get the opportunity to actually sit down for an hour and be able to write it out.  this time I don’t.  I’m speechless… almost thought-less.  I’m overwhelmed. all because of a short book called, ‘wrestling with an angel’ by greg lucas.  it’s a father’s story of raising a boy with disabilities, severe disabilities.  it is a quick read.  you can get through it in a couple of hours.  but it is the last two paragraphs that have left me… silent.  here they are:

But perhaps the sweetest discovery of all was learning more about the character of my heavenly Father through the struggles of my disabled son.  It is one thing to read about His faithfulness, to talk about His mercy, and to write about His grace.  But to experience these things face to face requires a heavenly vision that can only be obtained by walking through the suffering of His providence and coming to the realization that the darkness I have experienced is actually the shadowing shelter of my ever-present Father.

It is in this shadow that I have wrestled with an angel until the breaking of today.  And even though I now feel beaten and broken from the battle, the limp that carries me away from the sacred place forever reminds me that I have been touched by the hand of the Almighty.  And by grace, I have prevailed.”

to consider this ‘darkness’ the shadow of God… how amazing… he’s precisely right.  feeling beaten and broken… yes.  that too.  the limp is proof that I have been touched by God… absolutely.  “and by grace, I have prevailed.”  … I unconditionally, wholeheartedly agree. 

now, if I can just keep this perspective at the forefront of my mind as I too, clean poop off of an ever-growing boy that doesn’t want to be cleaned… as I am bitten on the shoulder, arms, hands and face… as I am hit, scratched, pinched… my hair is pulled… and I am hollered at.  could I just remember that it is when I am weak, that I am strong… that this ‘thorn’ is what  keeps me from becoming conceited… that His grace is sufficient… that I can boast all the more gladly of my weaknesses and afflictions so that Christ’s power will rest on me… (2 corinthians 12)because, like greg lucas said, “and by grace, I have prevailed.”  there is no other way.

please check out the book  “Wrestling with an Angel” by Greg Lucas.  he also has a blog.

thank you so much for writing this book Mr. Lucas.  it has been truly inspiring.

 

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I was looking for a special poem to thank the paras and teachers in cole’s classroom and I came across this one by erma bombeck.  ( I really like her writing)  it brought me to tears pretty quickly.  it’s nice to have a different perspective every once and awhile.  I get so busy just going through the motions and doing what needs to be done, I forget the bigger picture.  to even think   be reminded that God is not only aware of me, but that He is on my side and considers me worthy of the testing is so very humbling.  I hope you like this poem.  pass it on to other parents of special needs kids.

The Special Mother  

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of disabled children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint, Matthew.”
“Forrest, Marjorie, daughter. Patron Saint, Celia.”
“Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”
Finally he passes a name to an angel and smiles. “Give her a disabled child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a disabled child a mother who knows no laughter?
That would be cruel.”
“But does she have the patience?” asks the angel.
“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she’ll handle it.”
“I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I’m going to give her has a world of its own.
She has to make it live in her world, and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn’t know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see–ignorance, cruelty,
prejudice–and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side.”
“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.
“A mirror will suffice.”

………………………………..

so much of this poem rings true for me personally…  happy, selfish, unbelieving.  and other aspects too… I’ve seen cruelty, ignorance.. I’ve heard the miracle of ‘mama’ ( at age… 4.  4 years-old that is) I take no physical activity for granted.  I don’t know about the ‘give her a mirror’ part, but otherwise I feel this poem to be pretty accurate. 

it’s hard to think of character development as a blessing most of the time.  usually because that path lies through a valley of pain… physical, mental, spiritual.  but, now that I am well acquainted with this path, I can appreciate the growth a little more.  I’m thankful that God said, ‘give her a disabled child’.  I can’t imagine the person I would be if I was choosing my own way.

first words…

September 16, 2010

we all know them.  we all love to hear them.  not just the mama and dada and baba… the ones that continue  to come along as our littles babes grow and learn.  when they use a word and actually understand what they just said or even use a larger word correctly, I know.  I remember.  gabrielle has been using ‘actually’ correctly for a while now.  and dawson just told me today that ‘he realized he was capable’ of something.  I was impressed more with his choice of words than the thing that he just ‘realized he was capable’ of.  but as the hectic day of school was changing into the hectic night of extracurricular activities I heard a new word that melted my heart and brought tears to my eyes.  a small, but wonderful word that was used in complete correct context.  a tiny little word that I have heard from so many people and yet it never ment as much as it did tonight.

I had just gotten cole set at the table with his supper and his helper and his drink.  gabrielle was all ready skipping her sweet little first grader self to the van to leave for cheerleading and I was backing out the door still listing off instructions as I think I must do all the time.  cole kept looking at me, kind of over  his shoulder and I could tell he wanted to say something.  now, please remember that he is 13, has very limited speech and trying to figure out what he might want to say will make me 15 minutes late to the little team of cheerleaders that are awaiting instruction.  I was backing out and he said, ‘wait’ and put his arms up in the air… this means that he needs a hug before you go.  he’s a big hugger and does this to almost everyone.  I gave him a hug and started backing out and again and he called ‘WAIT’ a little louder.  know he can easily got caught up in these little toddler games and as I’ve said, I need to be moving along.  I just ask what and stay where I am and wait… he looks at me…  for a bit… and then he says, ‘miss’.  … … … as in I’m going to miss you. … … …  I came back in and gave him a big hug and a kiss and then had to go.  I was so blessed and so cheered to hear that small, simple word.  a first word that I will remember for a very long time.

on a morning when I’d rather not get up I was mightily blessed.  it was about 7:15 this morning.  I could hear cole calling from his room.  I tried to push brian out of bed so he could go get cole, but he wasn’t really moving.  I laid there a few more minutes wondering  if I should keep trying to wake brian or if I should just let him sleep and go get cole myself…  I decided I’d go.

I crawled in bed with cole and got under the covers.  this is and always has been one of my very favorite times with him.  he’s very friendly in the morning when he wakes up on his own.  he likes to talk about things and stretch and just kind of hang out.  he always was our morning sleeper.  a quality that brian and I both love in a child as we are morning sleepers too.  anyway, the first thing he said was ‘morning’, a rather new thing to say for him, a new word in his growing repertoire.  then he said ‘happy mother’s day’. … … … all on  his own.  no prompting.  I didn’t even know he could  say that.  it just melted my heart.  it seriously was the sweetest thing I’ve ever heard.  of course he saw how excited I was and he kept saying it.  he’s been saying it all day.  a very welcome blessing on this bittersweet holiday.  something more than I would have asked for or expected.  the best mother’s day gift I’ve ever received.  it may seem small to you,  but remember that cole is 12. … 12! …  he has never said happy anything to anyone in his life without specific instruction.  it’s kind of like hearing ‘mama’ for the first time, the first deliberate, arms reaching for you, ‘mama’.  it really got the day started off on the right foot.  thank you God for little kisses along the way to help heal the broken-hearted…

Now to him who is able to do immeasurably more than we ask or imagine, … to him be the glory … for ever and ever!  Ephesians 3:20-21

just to clarify…

March 15, 2010

I just wanted to clarify about my last post.  I didn’t mean for it to sound like I was complaining… although I think it may have come across that way.  I am very appreciative of the friends and neighbors that help with picking up and dropping off my other 2, I smile when I get your emails and messages, I’m happy to have doctors and nurses who treat us soo well.  … … … I guess the part that hurts, the part that is upsetting, the part that does tend to make me crabby is that ‘this’  is what is normal for us.  I don’t want to be so familiar with the hospital, I don’t want to be on a first named basis with a good number of doctors, I don’t want my baby to have to go to the hospital every 3 months just to hopefully help his feet stay braceable.  … … …

just another surgery…

March 11, 2010

cole had “surgery” today,  a regular procedure that he has done every 3 months.  … every 3 months for the past 11+ years.  it makes going to the hospital no big deal, and something about that bugs me.  the no big deal part anyway.

I remember the first time cole had this done.  it was a big deal.  he got a new stuffed animal, I believe it was a lemur.  mama and daddy where there.  meme and poppie were there.  we were all nervous.  everyone in the family knew what was going on and when and where…  …  today, some 50 odd surgeries later, life doesn’t even blink.  I take him by myself.  brian meets me at the hospital so he can carry cole into the sedation room and just hold him for a little bit.  hardly anyone knows we are going.  hardly anyone asks how it went or if cole is okay.

it seems to be another one of those events in my life that comes with a wide range of emotion.  I see all the ‘first timers’ there.  you can tell because mom and dad are there and so are the grandparents. they look all nervous, the mom always comes out of the sedation room crying because she has just seen her little baby go limp and lifeless right in front of her eyes…  I don’t have that anymore.  the hospital is like cheers for us.  the staff knows cole.  they are happy to see him and he is thrilled to see them.  today in fact, the anesthesiologist was excited to meet ‘the legend’.  we laugh and talk with the doctors and catch up on how everyone’s family is doing.  I didn’t even go in with cole when he was put under today… (he won’t remember any of that anyway because of the versed (a sedative) he takes when we get there).  I sit in the lobby and flip through magazines and watch the other parents.  when it is time for cole to start waking up, the nurse will come and get me.  she tells me that we can leave whenever we want, we know the drill.  so those seem to be advantages to having a frequent flier card at the hospital…

on the other hand, I feel a little  jilted that it gets treated like we went in for a yearly physical. it is just as serious when it is the 50th time as it was the first time.  he might not wakeup.  he could be further debilitated.  the shots could make his legs feel like they are numb and only set us back instead of helping us to move forward.

how do I balance it out?  how do I treat it?  do I tell everyone?  do I tell no one?  am I thankful that cole is happy to go and that I don’t have to add crying to the equation?  am I ticked because no one called to see how it went?  how can they call if they don’t know? 

… just another situation spinning around in my head that I need to lay down.  give it to God.  He was with me today.  He watched the whole procedure.  He knew the outcome before it started.  He knows…  He knows…

Be still, and know that I am God…  Psalm 46:10

ella, goofy, paws…

March 7, 2010

 

here’s what cole does after school.  he has us load up his best friends in his little sled and pulls them around the neighborhood, up to the park and around the ice rink.  he is just ecstatic about it.  he doesn’t seem to mind the grating sound of dragging a plastic sled on asphalt for blocks, he could care less about whether this looks silly to anyone else, he’s just happy to be out and about with his little friends.  let me introduce them…

paws is his very favorite, most special friend.  he’s been here since the beginning.  he’s been to dr. appointments and hospital visits.  he’s been to the north shore and breckenridge.  he’s been chewed on and thrown up on and loved.  loved, loved, loved.  every night.  he sleeps by cole.

ella is a newer friend.  he picked her out last summer with his birthday money.  he named her.  he takes care of her, including going to the pretend doctor, field trips to school and therapy and lots and lots of naps.  she doesn’t get invited everywhere though.  sometimes cole is very clear about that.  ella must stay home.

goofy is his newest friend.  he just got him this fall as a reward for going on the potty.  cole really likes mickey mouse clubhouse and goofy is his favorite character.  goofy gets invited sometimes, but he stays in cole’s room most of the time.  he gets included in hospital checks too, the pretend ones anyway.  but he does have to stay home most times too.

on this day though, everyone was invited and cole happily pulled them around the block.  I really just can’t help but smile about it.  how cute is this?!?  it is one of those innocent, endearing moments that make me love him so, so much. 

my ding-a-ling…

January 23, 2010

okay, there’s no easy way to say this.  this post is all about a penis, or more lovingly referred to as a ding at our house.  if you don’t want to know… stop reading and check back later.

a couple of days ago I was helping cole have a snack and watch mickey mouse.  he was sitting in the corner of the couch like he usually does, except he kept fidgeting and straightening out.  it is hard enough to keep him sitting up and give him a snack when he’s not wiggling, so I was getting tired of trying to adjust him.  he looked a little odd, like something was not right.  I asked if he was okay and he shook his head no just ever so slightly.  I asked if something hurt and he mouthed yeah, but no real words came out.  then he put his paw (hand) on his ding.  i asked if his ding hurt and he said yeah.  so I felt to see if there was something in his pants…  I couldn’t feel anything… not even his ding.  somehow, his little ding had gotten pushed back as if in a gender bender!  poor guy!  I helped him ‘adjust’ and then things were fine.  whew~

this got me thinking about all the little things he can’t do or say or fix for himself…  like an eyelash sitting across the lens of your eye… a mosquito sucking the blood out of your arm, ear or check… a simple itch… a hard booger… or, your penis stuck in a very uncomfortable position!  all  of these things have actually happened to cole and I’m sure others that I’m not aware of.

so, the moral to this post… be thankful you can scratch your own itches!  be thankful you don’t have to adjust your 12-year-old son’s ding!  : )

and just for fun

“I love this…”

December 10, 2009

cole had ‘surgery’ this morning.  his usual botox and phenol.  let me tell you why I’m glad that’s over.

cole has been saying, “guchi” and “hospital” for days.  he also likes to say “only paws”  and “goofy.  ella.  stay home” and “dado.  hold me.”  it may not sound like much, but after hours of ‘goofy. ella.  home.’  I’m about ready to go crazy.  let me interpret for you.

‘guchi’ is his doctor.  dr. tanaguchi actually, but cole just calls him guchi.  ‘hospital’ just means we are going to the hospital.  ‘paws’ is his little blue kitty that he has had since day 1. really.  day 1.  he always get to go.  ‘goofy’ is the actual goofy from mickey mouse and ‘ella’ is the baby he got for his birthday.  they can’t go to the hospital.  I’m not sure why, but this is a decision he has made and he isn’t budging.  they absolutely can not go to the hospital.  and the ‘hold me dado’ (pronounced da.do) is just cole making sure daddy will be there and that he will hold cole before they go into the induction room.  cole can say ‘hold me dado’ about 60 times a minute… or every second.  it’s crazy.  we’ve gotten to the point that we don’t tell him we’re going because he is so obsessive about it.  he’s excited.  he loves  to go.  this is good because we go often.

this morning as we are on our way to the hospital cole was yelling, ‘GO CARS!’ as we sat backed up for miles in the freezing cold.  when another car pulled in front of me he yelled, ‘HAY!’ like he was a new york cabbie!  I kid you not.

when we were finally there and started going through all the pre-op ‘stuff’, like blood pressure and blood oxygen and weight and on and on, he kept say, ‘I love this!’  it was funny.  the nurses and doctors all love to see him.  it is the equivalent of cheers when norm comes in and the whole bar goes ‘NORM’. 

I can’t help but smile.

his body may be broken, but his spirit is alive and well.

… … …

on a side note.  cole was almost 61 pounds today which is a miracle.  an answer to prayer.  a year ago in december, we were facing a feeding tube if cole didn’t start to gain.  and gain he did.  more than 20%.  sing praise…. sing praise.

… … …

on another side note.  I may have noticed some seizure or pre seizure activity the last few days.  because cole has a seizure history, we will be in to see our neurologist soon.  very soon.  for an EEG.  pray that it is nothing.  nothing at all.

back to reality.

after a nice weekend to myself, where I mainly think of myself, monday comes in not so nice.  I feel like I have extra patience because of my time away.  I wake up not feeling pre-weighed-down.  and then I go to wake up cole.

usually this is one of my favorite times with him.  he’s all warm and cuddly and just like every other kid in the world.  no sense of nonworking limbs or the inability to talk when you are laying in bed, under the covers.  he usually smiles and curls up with me really tight and says, ‘so hungry’.  it’s wonderful.

 … not today.

today he is mad from the get go.  growling and whining.  throwing ‘paws’. (his little blue thermal stuffed kitty)  he doesn’t want to get up and he doesn’t want to stay laying down.  he doesn’t want to eat or to go to the bathroom.  he’s just crabby.  I try to give him some time to change his attitude.  it doesn’t work.  so I take him to the bathroom anyway.  as I am hoisting his 4 foot long, 60 pound body over my shoulder to carry him to the bathroom, he sinks his front teeth into the back of my shoulder.  not like a true bite, just his top teeth.  he’s really good at it and it hurts just as much.  I told him to stop and kind of shook my shoulder to move his head, still maintaining my patience.  then we sat on the potty where he shook his head ‘no’ at me and made his ‘butt face’ at me. (this would be his mad face.  he wrinkles up his eyes and purses his lips together really tight.)  I gently remind him he has to go in the morning like everyone else does.  I have him lean his head on my shoulder to help him relax.  he sinks his teeth in again.  I shake him loose again.  finally he pees a little.  a little.   I know there is more, but he isn’t going.

biting[1]

fine.

I wrangle him out onto the couch to eat.  he doesn’t want to eat.  fine.  I tell  him to let me know when he changes his attitude.  of course 2 seconds later he calls for me but hasn’t really changed anything.  I let him wait and he calls again.  this time he seems in a better mood.  he wants to read the franklin book he checked out at school, about the hospital. 

everything seems better now.  he eats.  he wants to take his book to school and he is focused on that.  I let him sit there to watch blue’s clues and look at his franklin book while I help punkin get ready. 

now it is about 8:30 and he needs to get his shoes on and hop into his wheelchair.  I go to pick him up off the couch, which he is kind of sliding off of.  his legs are hanging over the edge so that only his butt is still on the couch.  I notice an unusual dark spot. … sigh …  he peed.  a lot.  ahhhhhh.  the bus will be here in 5 minutes.  he’s mad at me now because he has to get new clothes on… and quickly.  so I try to change him as quickly and nicely as I can.  meanwhile he is scratching and screaming at me.  flailing.  jerking his stiff arms and legs all over the place.  I’m about ready to shake him!

finally dressed.  shoes on.  into the chair we go.  of course, as I pick him up to get in he is sinking his teeth into me again.  he won’t bend to sit.  he’s making the butt face.  I seriously consider just letting go of him.  just letting him fall where he may. … I don’t.  I get him to bend at the waist enough to get his seatbelt on and try to do his other chest harness.  he’s pawing at me the whole time.  now I have to give him his medicine before he leaves and he bites the syringe so hard it almost breaks.  seriously.  this kid can drive me crazy!

the bus pulls up.  I drive him out, make a ‘choking someone’ sign to the bus driver and hand him off.  I won’t miss him.  I’m glad someone else will be helping him today.  of course, he won’t be mean to them at all.  oh no.  he is ALWAYS nice to everyone else.  that drives me nuts too.  I’d like someone else to see how mean he is sometimes… besides brian. 

hopefully it’s over.  he’ll come home happy, like noting even happened.  and maybe tomorrow when we get up and do it all over again, he’ll be ‘nice cole’.  maybe.

day trip, part 2…

August 30, 2009

yesterday was a good day.

first off, cole was doing some ‘volunteer’ work at church.  yes.  really.  he was part of a mock classroom to train in the new teachers.  he did wonderful and was very proud of himself for helping.

now, since cole was going to be gone doing something, I thought we (the other 4 of us) could go and do something.  at least I could go without feeling guilty because cole was doing something on his own.

we decided to go back to taylor falls for the day to do some more hiking and climbing.  it was great.  we stopped and had fresh doughnuts on our way into the park.  we hiked around off the beaten trail for a couple hours and then headed to a little park up the river to have a picnic.  it was so easy.  just in and out of the truck.  parking where ever we wanted.  sitting where ever we wanted.  going into what ever store we wanted.  no worries at all about ‘accessibility’.

after some more hiking, we played mini golf at a place we couldn’t have stopped before.  then we went to the sculpture park to let dawson and punkin run.  and they did.  they ran and climbed and slid and ran and went on the swings… nothing holding them back.  it was fun to watch.

next we went to stillwater and walked around looking in all the different little shops.  you’d think our kids have never got to do anything…. …. oh wait…. …. they haven’t.  everything was exciting.  even the antiques.  really.

we ate at a little burger joint along the main drag and then went looking for what we were told was the best ice cream deal in town.  we found it. and it was.  a child’s size was amazingly huge.  I mean heaping.  of course, what kid isn’t tickled to have an ice cream cone that is practically falling over.  those smiles said it all. 

we started heading home around 8:00.  as brian was in the gas station, dawson said, ‘mom, can we do the exact same thing next weekend?’.  I think they had fun.  I did.

… … … … … … … … … … … … … …

now let me tell you what was going on with cole!

after having a wonderful day of volunteer work at the church, cole came home to play with friends.  he stayed dry all day!!! and, he went on the potty with 2 new people!!!  I am beside myself about this!  I was expecting a couple of accidents, but NO!!  cole did it.  he came through in a big way.  it was just the icing on the cake.  a little pat on the back saying, ‘see it is okay.  cole’s a big boy.  your other kids need to go and do regular kid stuff.  have a little fun.  stop being so worried about everyone.’

thank you God for a good day all around…  more blessings than I could list.

Rejoice in the Lord always, again I say rejoice!  Philippians 4:4

the poop scoop…

July 24, 2009

Potty004[1]just so you all know, cole is doing awesome with the potty training!!  he woke up dry every morning this week.  he peed on the potty each morning, went poop on the potty the last 3 mornings after breakfast and stayed dry all morning until it was time to leave for therapy!!  he even called to me once and said ‘ready’ when he had to go … and he actually went!!

it seems to be hard to eat and stay dry … when he has his afternoon snack, and tonight right when supper started (even though we just tried before coming to the table) he pees.  still I think it has been a very successful first 4 days.  I am greatly encouraged.  praise be to the God who can give use immeasurably more than we imagine.

Ephesians 3:20-21 

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever!  Amen.

pee on the potty…

July 21, 2009

HomeToiletImage2[1]

so, now that cole has turned 12 we have decided to work harder on the potty training.  yes, I said potty training.  you know what it is like when you know it is time for your toddler, say twoish, to start going on the big potty?  how it is kind of exciting and yet it seems like it is going to be alot of work? you know what i mean?  well, now take that toddler and imagine he is almost as tall as you, lanky and stiff… and he can’t exactly say when he has to go or even walk into the bathroom on his own.  you’re going to have to carry him and bend him and balance him and make sure his ‘ding’ is pointed down so that you don’t end up with a warm, wet pair of jeans for yourself. 

I feel bad for thinking this, but do I really want to potty train him?  it kind of seems like it will just be alot of extra work for me.  the majority of this job will be on my shoulders.  watching the clock, keeping track of the last pee and the last poop.  watching how much fluid intake there is.  all that kind of stuff. 

of course, all these reasons are selfish on my part.  they don’t take into account cole’s feelings at all.  you should see his proud and beaming face when he goes ‘whiz’ on the potty like a big boy.  you should hear the joy in his voice as he tells daddy, as clearly as he can,  ‘poop. on. the. potty.’  or ‘I did it.’  doesn’t he deserve a chance to wear spongebob underpants like all the other boys?  shouldn’t he at least get the opportunity to not have everyone around him know that he just pooped in is diaper?  won’t it only give him dignity and a sense of real accomplishment to use the toilet like everyone else?

of course all these thoughts are pretty constant in my head.  the little angel on one shoulder and a devil on the other.  back and forth.  today we just bit the bullet and now we are going for it.  it went pretty well.  he stayed dry most of the time.  peed on the potty twice. and spent more than 3 hours going ‘commando’ without any accidents.  a successful start.  pray it goes well…. for cole… and myself.

cole…

July 14, 2009

Dawson concert 07 018

look at that smile.  and it is genuine!  one thing with cole, he is genuine.  I don’t know that he could fake an emotion, whether it be joy, frustration, fear or praise, he tells it like it is.

cole is about to be 12.  this is hard to believe.  where do the years go … even when the years are hard?

a little more about him…

born at 37 weeks, by emergency cesarean, on july 16, 1997.  weighing in at 5lbs 2 oz.   we spent 2 weeks in the NICU with oxygen, unstable blood sugar, jaundice.  infantile spasms at 6 months.  we were at the hospital or doctor’s office 56 times in his first 52 weeks of life.  we’ve had seizures and surgeries, blood draws and IVs, pneumonia and dehydration.  we’ve bought wheelchairs and bathseats, been to therapy and therapy and therapy.  through it all, cole has been a trooper.  he is always smiling, loves to sing, hugs his doctors and nurses, a friend to all.  seriously.  when we go to target or the mall or any other place, someone knows cole.

his birthday is always bittersweet for me.  of course it is exciting and fun like typical birthdays, but there is also pain.  I relive the day he was born … just like I’m sure many moms do.  except there is alot of wondering, alot of guilt.  … I should have gone into the hospital sooner … why did I wait at home … I should have woke brian up earlier … is this my fault … did I do this … on and on it goes.

and yet, where would we be without cole???  my guess is that we would be an average family, going about our days.  we wouldn’t notice the little things that we do now … like how each word is a big accomplishment, …  ’mama’ wouldn’t sound so sweet.  or how each step is amazing when you think about how many small muscle groups and large muscle groups are involved.  or how the sound of true, uninhibited worship might not sound like everyone else in the choir.  hallelujah.

I’m not even sure if we would have made the jump from knowing in our heads to believeing in our hearts.  which is  the difference between life and death … the difference of heaven or hell.

so, at the end of the wondering and guilt I come back to … ‘this must be the plan for us.’  maybe God knows the best path to bring us home.  maybe that path is through the difficulties and blessings of having a disabled child.

I can’t do it…

July 7, 2009

I can’t do it.  I just can’t.  Not yet.  Someday…  I’m working on it anyway.

I can’t leave him behind.  Maybe that’s not the right way to say it, but that is exactly how it feels.  How could we go on a family vacation without all of our family?  It just won’t work.  The whole time I will wonder what he is doing, if he is sad, if he feels rejected by even his own mama.  Of course all the worst things I can imagine are what I am going off of.  Not all the good things…. like being ‘normal’ for a couple days, like the fact that Cole is much happier at home playing his favorite games and his favorite friends than being outside in the hot and sun. (which neither of are tolerated well by him) 

I know it would be fun for Dawson and Gabrielle to go out with just Brian and I.  I know that it would be good  for them.  I know this from books, doctors and friends that are in the same situation.  It is just a lot easier said than done.

I plan to work at it though…. and more seriously than before.  Maybe we’ll stay overnight somewhere here in the cities again.  Maybe we’ll go to a movie after church and let Cole go home with friends.  Maybe…. LORD give me strength for the maybe.

leaving one behind….

June 23, 2009

here I am again at a decision I don’t want to make, which path to take…

decision-making[1]

  should we take dawson and punkin on a little camping trip and have cole stay with friends or just stay home or have everyone go or have everyone go and take an aide along too….  actually, none of those answers are the answer I want.  I want able bodied children,  a completely accessible vacation spotsomeonethat will just do everything with and for cole and say ‘go!  don’t worry about us.  we’ll be having more fun than you.’  I don’t know what I want……..

do I really want cole to be able bodied?  well of course.  but … I can’t even imagine what that would be like.  plus, cole helps us to have a proper perspective in this ‘temporary’ world. 

would an accessible place make it better?  well, it makes it easier, but it doesn’t fix it.  I still have a little boy that says ‘me too’ when dawson and punkin are going to go swimming, run along the beach, do crafts or whatever they might be doing, and … well… it just isn’t that easy to help cole do it too.  it is physically hard to assist him (especially as he grows), it is emotionally upsetting because I hurt for him, I hurt for myself and it is spiritually challenging because I think … hasn’t he paid his dues … why can’t You just heal him now?  why can’t You just let him run like the other kids?  haven’t we learned our lesson of whom we should depend on?

would a helper above all helpers make the difference?  no.  again, it makes it alot easier to have someone help carry my burden in the physical sense, but they can’t take away the anguish of a mother that wishes her baby didn’t have to go through life ‘disabled’, the endlessness of a mother’s guilt, the daily breaking of my heart…..

the decision should be simple, but I think it is all the emotions tied up with the decision that makes it hard.  the longing for ‘normalcy’, the not wanting to leave one behind, the not wanting to hold the others back, the not wanting to deal with this anymore, the how do I take care of everyone,  the feeling of, this life never has or never will be ‘fair’.

I turn to HIM …

To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me.  Three times I pleaded with the LORD to take it away from me,  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weakness, in insults, in hardships, in persecutions, in difficulties.  For when I am weak ….. then I am strong.

2 Corinthians 12:7-10