Falling

Have you ever felt like your life is in a spiral and you are in the middle of it falling?  That is how I have been feeling this last month.  Just when Jackson got better, a new round of sickness hit our house.  There was a roller coaster of emotions with Daniel finding a potential new home.  There was a broken truck, broken washer, and an ER visit, all in one week.  One thing after another has left me feeling like I am falling and can’t stop myself. 

The flu hit our house shortly after Thanksgiving.  It started with Sylvia, hit me, moved to Kevin, and has housed itself in Jackson on and off for a couple of weeks.  I feel like our house should be wrapped in plastic and anyone brave enough to enter should be in an Ebola protection outfit.  I’ve gone through 2 big bottles of Lysol, countless bleach wipes and have been keeping our back door open despite the 30 degree temps so fresh air can come in.    I think (knock on wood) that we may be on the tail end of it.   Having said that, we are getting ready to get on a plane to Florida so I am sure there are some germs just waiting for us there.   That’s my pessimistic prediction. 

Despite the illnesses, the past month has been emotionally difficult for me.  As most of you know Kevin and I decided back in September that Daniel wasn’t going to be able to live with us permanently.  We have to protect Jackson from Daniel hurting him and we just don’t feel we can do that with him in our home.  For me, there is a mother’s feeling that Daniel is just not a good fit for us.  None of it is his fault.  He had a crappy start at life.  That crappiness has created so many diagnosis in a little 8 year old boy that I have lost track of all of them.  AD/HD, anxiety, depression, oppositional defiant disorder, attachment disorder, PTSD are just some of them.  He’s a difficult kid to live with.  Even harder when you already have a child with special needs that requires a lot of attention.  I wish I could have gotten Daniel as a baby.  Maybe we could have prevented some of these things from happening to him.  But we didn’t and I don’t have the resources or personal ability to change them.  I wish I did.  When we met Daniel and Sylvia I naively thought all he needed was a loving mom.  I thought that would be enough, but it wasn’t.  Now, I can’t even call myself a loving mom.  I’m more of a broken down, frustrated, snappy, impatient mom.  I’m not good for him at this point.  I have lost my ability to really be there for him in a supportive way.  It’s hard to admit.  And I know some of you who are my close friends and family are thinking that maybe I am being hard on myself but I know the truth.  I’ve spent the last month doing a lot of soul searching and really taking a look at myself.  I don’t like what I’ve become.  I am patient and loving with Sylvia and Jackson, I am a good mom to them.  But with Daniel I have shut down for some reason.  I am carrying a lot of guilt and I am grieving for the relationship I thought I would have with Daniel.  In my weakest moment a couple of weeks ago I laid on my living room floor and cried for 3 hours.  That was the day I picked up the phone and called an organization that works with foster parents so I could talk to someone.  I’m glad I did.  I found a couple of other foster moms who have went through similar situations.  What I learned from these women is that I am not alone.  That there have been other families who have had to let a child go because of safety reasons.  That we are doing what is best for our family and that I’m not awful for saying Daniel needs to leave.  After talking with them, taking a hard look at myself and trying to make sense of this hideous situation, I have started to heal a little bit.  I accept that Daniel is not a good fit for us, that I have to put Jackson’s safety first.  No matter our good intentions of taking Daniel in to our home, it just didn’t work out. 

This morning I went to Sylvia and Daniel’s parent teacher conferences.  Afterward, we had about ½ hour before school started.  Sylvia went to her classroom to help her teacher and I took Daniel downstairs and let him have a second breakfast.  We sat at the table just talking and hanging out.  It was the first time in a couple of months that I felt a glimmer of hope that even though he was leaving our home, we could still have a relationship and that he would still be a son to me in our own unconventional way. 

A couple of weeks before Thanksgiving the social worker let us know that she found a permanent placement for Daniel.  The social worker came to our home and let Daniel know he wouldn’t be staying with us permanently.  He was a little sad and asked if he could stay.  When the social worker explained to him that he couldn’t stay he took it fairly well.  Mostly he just wanted to go play.  The next day Daniel met the new family.  They loved each other right away.  Then a couple of days before his first overnight visit with them they changed their minds.  It was devastating.  The social worker explained to Daniel that she decided that that wasn’t the right family for him, essentially taking the blame for it.  She’s awesome!  Unfortunately telling Daniel he wouldn’t be staying with us has caused some more unpleasant behavior.  We decided that we just need a break.  I am at my wit’s end and I just need some time with Kevin, Jackson and Sylvia to relax.  Our house is overstressed.  The social worker found a good family who live on a big farm where Daniel will go for Christmas break.  The rest of us will go to Colorado and Florida.  Another reason for guilt.  But in all honesty if we take Daniel with us, the stress of his behavior management may send me over the edge.  I want to not have to worry about where Daniel is on a constant basis to make sure he isn’t near Jackson.  Being on a 100% of the time is exhausting.   It is time that my family of 4 have a relaxing, peaceful vacation.  Daniel wasn’t upset that he wouldn’t be with us.  He is looking forward to being on the farm.  I guess that is a good part of attachment disorder.  He’s not attached to us so he won’t miss us.  That’s still hard for me to wrap my head around, but it is what it is.  I’m learning to accept it.

We leave Saturday and will spend a couple of days in Denver visiting my family then fly to Florida for 13 glorious days.  I am anxious to see my cousin’s four beautiful boys, for my father-in-law’s giant bear hugs, the arrival of Kevin’s big family for Christmas, feeling the sand on my feet, the smell of the ocean, the sound of the waves, and the absolute peace that Jackson’s face displays when we go to the beach.  His face says it all, peace and love.  Isn’t that what Christmas is supposed to be about? 

“Living one day at a time; enjoying one moment at a time; accepting hardship as the pathway to peace.” – Reinhold Niebuhr

Sick

One thing I think we all take for granted is our health.  It usually isn’t until we are sick that we realize how grateful we are for being in good health.  This happens to me every time I get sick.  I vow to appreciate being healthy as soon as I get better.  But when you have a child with special needs your appreciation for health takes on a different level. 

A couple of weeks ago on Sunday Jackson was kind of grouchy so I thought he was tired and put him down for a nap.  When he wouldn’t go to sleep I went in to check on him.  He had thrown up – all over his bed.  Fun, right?  We soon discovered he had a fever.  So we started the meds and jello.  The next day he still had a low grade fever so I kept him home from school.  His fever broke early afternoon and he was back to himself.  Tuesday he woke up totally wiped out.  I kept him home just to rest.  He was also a bit congested but didn’t have a runny nose or anything.  Wednesday and Thursday he went back to school.  He was still mildly congested but nothing too bad.  Friday he woke up and he was really sick.  Lethargic, low grade fever, congestion, cough and runny nose.  It was of course Halloween.  Kevin and I had been making his Halloween costume for a couple of weeks.  He was going to be Scooby Doo and we had built the Mystery Machine to wrap around his wheelchair.  By the afternoon it appeared there would be no Halloween for Scooby Doo.  He was very sick.  To top it off, I couldn’t get him to eat or drink all day.  Now if you know Jackson you know that kid LOVES food and eating.  I think eating is more important than breathing to him.  So I knew something was really wrong with him.  That evening I noticed a weird bite looking sore on his thumb.  He also had some weird spots on his chin.  Suddenly I remembered that the daycare Daniel and Sylvia go to had an outbreak of Hand, Foot, Mouth Disease.  Kevin googled it and sure enough it looked like the sores he had.  But he also had symptoms that didn’t fit that disease.  One thing I discovered is that Hand, Foot, Mouth Disease is an enterovirus.  With enterovirus being in the news a lot lately you can imagine where my mind went with that.  The next day, Saturday, he woke up and ate a few bites of waffle, but that was it.  He soon went back to lethargic, not eating, coughing and a non-stop runny nose.  He also wasn’t sleeping well, up most of the nights.  The sores on his chin had spread all over his cute little face.  The biggest one right on the end of his nose.  He looked like Rudolph.  By Sunday morning I was freaking out a bit.  I was worried about the enterovirus thing.  Kevin was out of town all weekend for work and about every hour I was flipping a coin on whether we needed to head to the ER.  By Monday, he wasn’t getting better, he was getting worse.  I called the pediatrician and in we went.  I am glad we did.  Jackson didn’t have enterovirus or Hand, Foot, Mouth.  He had a very bad bacterial infection and was on the verge of a very nasty ear infection (for the record, he is 6 and has never had an ear infection).  So we started the antibiotics that day.  He slowly started getting better.  By Tuesday afternoon our happy boy was back!  I kept him home on Wednesday just to give him one more day to heal.  By Thursday he was back at school.  Oh how I appreciate him being healthy!  Despite Jackson’s brain malformation and epilepsy, the kid is freakishly healthy.  He rarely gets sick.  Usually he only gets sick the two times a year when we go to Florida.  He pretty much always picks something up on the plane.  But never to this extent of being sick. 

The thing for me is that despite his relatively healthiness, he is still a kid with special needs.  And kids with special needs are much more susceptible to illness and (god forbid) death.  I am on a lot of online support groups for kids with PMG, epilepsy and neurological impairments.  Pretty much every other week or so one of these kiddos leaves this world.  That weighs on me, daily.  I think all parents worry that something bad will happen to their children.  But do any of you worry every day your child is going to die in his bed from a seizure while you sleep?  I do.  I wake up almost every night and turn the baby monitor up to hear Jackson breathe.  Just to make sure.  I worry that a simple cold will turn into pneumonia, his body will shut down and that he will die.  I know, I’m paranoid.  To me though these are real concerns.  Jackson is the love of my life, he is the greatest teacher I have ever had, he has taught me what total, raw love is, he has brought me more joy than I could have ever imagined, he is the reason I am who I am today.  He has given me so many gifts.  All I want in return is to watch him grow up.  I want to know what he will be like in 10, 20, 30 years.  The kid continues to be a mystery to me – will he walk, will he learn some more words, in what ways is he going to surprise me with is accomplishments?  When he gets sick like he was the last couple of weeks I worry that I might not get to see the mystery of Jackson unfold. 

I am so thankful for Jackson’s health.  Everyday.  We should all be thankful for something as simple as being healthy.  So many are fighting for their health.  On that note, I leave you with a quote by Neal A. Maxwell.    “We should certainly count our blessings, but we should also make our blessings count.”

Times are a Changin'

Lots of things are starting to change here at Fort Klim (as I like to call our house).  Well at least ideas of change are starting to form.  I’ve said before I am not much a change person, I just don’t like it.  What I’m realizing lately is that while change sucks, the anticipation of change is even more sucky.  Regardless, change it is inevitable and it is coming.

Jackson has always been a big kid.  He was 32 lbs. at nine months.  Yes, nine months.  He was never a little baby or a little boy.  He is 6 now and weighs 67 lbs.  He’s heavy and strong.  I’m no shorty or weakling but I tell you what, carrying Jackson around is hard.  HARD!  He doesn’t make it easy either.  He won’t wrap his legs around my waist, he arches his back, and often hits me in the face with his flailing arms while I carry him.  It’s a lot just to carry him around the house but to get him in the house has become a dilemma.  We have stairs.  4 stairs from the garage to the house.  7 stairs from the entry way to the main floor of the house.  That’s 11 stairs.  It may not seem like much but when you are carrying a wiggly 67 lb. kid up those stairs it’s comparable to last few hundred feet to the summit of Mt. Everest.  At least that’s how it feels.  My legs and arms are burning and I am out of breath by the time we get to the main floor.  Every day gets a little bit harder.  The stairs are not something we can modify for a wheelchair.  So that is out of the question.  What we need is a new house, a rancher with no stairs.  What we also need is a winning lottery ticket.

As if needing a new house isn’t enough, we also need a new car.  We have a great SUV that was initially easy to get Jackson in and out of.  That was 2 years ago.  Getting Jackson in and out of the SUV is another feat in and of itself.  He also doesn’t like to get in or out.  He arches, twists his body, and pushes me away.  I can’t tell you how many times I have twisted my back getting that kid in and out of the car, or the amount of curse words I have yelled.  Every time I go to the chiropractor he is like “What have you been doing to yourself?”  Now we need a van with a wheelchair lift.  Anyone have a winning lottery ticket I could borrow?

Then there is Daniel.  The social worker is still looking for that “perfect” house for him.  Knowing that he is leaving and keeping that from him is really hard.  Kevin and I have always tried to be honest with the kids.  We feel they deserve that after all they have been through.  But in this case we know we need to keep it from him until there is a home in place.  It will be way too difficult for him with his anxiety and depression.  The holidays are approaching and not knowing what that is going to be like for Daniel and our family is difficult.  The whole idea of the unknown for him and us is gut-wrenching.  The anticipation of change is worse than change itself. 

Our family getting smaller, a new house, a new car.  Just a few issues the family who has a special needs and a foster child face.  As Gilda Radner said “Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.”  I don’t know how delicious it is but there is definitely a sense of ambiguity in our lives right now.

Decisions

Remember when you were little and life was easy but you desperately wanted to grow up and be an adult?  What were we thinking?  I’d sure like to go back to recesses, building forts in the woods, and playing in the bathtub till the water was cold.  Being an adult sucks.  It’s hard and you have to make all sorts of decisions.  I don’t like it one bit.  Sometimes the decisions are easy and sometimes they are hard, really, really hard.  Recently we had to make one of those really, really hard decisions. It’s almost even too hard for me to write about right now.  My emotions are kind of raw and numb. 

If you keep up with the blog you know that back in July we discovered our foster son Daniel, who we were planning to adopt, was hurting Jackson.  I don’t think I can put into words how devastating that was for us.  To try and process it was difficult to say the least.  There were lots and lots and lots and lots of conversations, putting some puzzle pieces together from Daniel’s behavior and trying to figure out how to keep Jackson safe and our family intact.  We put Daniel in daycare during the day this summer so that I didn’t have to be on heightened alert 24/7 about him being near Jackson.  That actually helped me a lot.  Watching Jackson non-stop to make sure he was safe was wearing me down.  We took Daniel to be evaluated by a neuropsychologist which didn’t really tell us anything we didn’t already know.  He did have some insights into Daniel and his behavior, but we didn’t get the answers we were hoping for.  We were living in limbo for a couple of months with a whole lot of uncertainty hanging over our heads.  Then one night I thought I heard someone in Jackson’s bedroom while he was sleeping.  I jumped out of bed and ran into his room.  It turned out it was just his curtains flapping in the wind.  But then I started freaking out.  What if Daniel went in there at night and hurt Jackson?  I can’t even think about that, it’s heartbreaking.  So I decided I would buy a lock for Jackson’s door.  That way he would be safe at night.  Then I told Kevin about it and we asked ourselves “Is this how we are going to live?”  Kevin asked me how we could be a family if we have to keep members of our family separate.  He was right.  How?  The answer is you can’t.  No matter how much you want to.  After two months of talking and soul searching and trying to find answers we finally had it.  We called our social worker and let her know that Daniel just can’t live in our home.  It isn’t safe for Jackson and it isn’t a healthy home for Daniel. 

Daniel needs a home where he is part of the family, where he can get the attention he craves, where he has a mom who doesn’t harbor hurt feelings toward him like I have been doing.  Daniel has been through so much in his short life, he needs to start a new chapter where he has a family that will help him heal.  We don’t have the time or resources with 3 kids to do the intensive family and personal therapy Daniel is going to need.  We can’t dedicate our lives to just one of our 3 kids.  It isn’t fair to anyone.  Right now Daniel needs someone to dedicate their time and energy on him.  He needs a chance to have that.  As much as I would love to be that mom to Daniel, I just can’t.  That is hard to admit.  I feel as if I have failed him.  We promised him our home, now we are taking that away.  I feel so much guilt, so much sadness, so much betrayal.  I know in my head that this is the best thing for everyone, but as a typical response my heart isn’t listening much to my head. 

Our social worker is amazing and we have met with her a couple of times emphasizing that we will wait until we find the perfect family for Daniel.  We need to make sure he goes to a new family that is willing to work hard for him.  And one that will make sure the connection with Sylvia won’t be broken.  Sylvia is staying with us.  Another reason I feel guilt.  The whole purpose of taking the two kids was to ensure that another sibling group wouldn’t be broken up.  Here we are breaking them up.  Sylvia’s counselor and everyone involved thinks this will actually be a good thing for Sylvia.  I do too actually.  Sylvia has kind of been on the back burner because of her brother.  He requires so much attention that she gets the leftovers.  While Daniel was in daycare this summer I had time to finally spend some time with Sylvia.  I’m embarrassed to say that I didn’t really even know her that well.  Building my relationship with Sylvia has been a ray of light for me in this difficult situation.  She is such a great kid and I have come to love her so much.  We had such a great time this summer and she has come to love Jackson so much.  She is so sweet with him and told me the other day that she thinks he is the funniest person she has ever met.  She dotes on him and he lights up when she plays with him.  Another ray of light. 

We haven’t told the kids any of this yet.  I dread that conversation.  I know it will be gut wrenching. 

I am hopeful we can find a great family for Daniel.  I am hopeful that Kevin, Jackson, Sylvia and I can build a strong family.  I am hopeful that Daniel will still be a part of our family and we can build a healthy relationship with him.  I am hopeful that these feelings of guilt, remorse and grief I am feeling are going to go away at some point. 

As I was talking things over the other day with Daniel’s pediatrician he said to me that age old quote “No good deed goes unpunished.”  Tell me about it!  But I think George Eliot’s quote sums up how I am starting to feel:  “Failure after long perseverance is much grander than never to have a striving good enough to be called a failure."

Kindergarten SUCKS!

Last year at this time I took Jackson to preschool for his last year and I remember thinking that I had one more year until Jackson went to Kindergarten and I would be FREE!  I couldn’t wait to have a whole school day to myself.  I anxiously awaited that first day of Kindergarten when I could begin the next chapter in my life.  Finally, last week that day arrived, and I absolutely hated it.

The end of summer came fast and I kept getting more excited as the school year approached.  It was like waiting to go on an exotic vacation.  I was as anxious as could be.  Then the night before school started I was putting the final items into Jackson’s backpack and it hit me.  My baby was going to school.  All day!  No more picking him up at 11:30 a.m. and taking him out to lunch at McDonald’s.  Gone will be our lunch dates and shopping at his favorite store - Costco.  My baby and best buddy was going to be gone, all freaking day!!!! What the hell was I supposed to do all day without him?!  A few tears appeared.  My heart began to ache.  I began to realize that Kindergarten sucked!  Big time.  I began to hate Kindergarten, the kidnapper.

The next day I took my baby to school.  Jackson was excited and happy.  He didn’t even notice me as I left (ugh!).  For the first week of school his teacher and I planned to transition him in slowly so I would be picking him up at 1 p.m. instead of him going the full day.  I left the school a little teary eyed and heartbroken.  I couldn’t wait to come pick him up at 1 p.m.  I went home.  It was quiet.  Too quiet.  The sounds of summer were gone.  I sat on the couch and pouted.  Yup, I pouted.  I was bored and had no idea what to do with myself.  I kept hating Kindergarten.  I did a little laundry, petted my dog, petted the cats, and hated Kindergarten.  Finally 1 p.m. arrived and I got my baby back.  The world was back to normal. 

Yesterday Jackson went to school for the whole day for the first time.  He rode the bus to school and rode it home.  Luckily I had a meeting that lasted all of the day so I wasn’t sitting around hating Kindergarten so much.  Which leads me to today.  I am sitting in my favorite place in Spokane, the Rockwood Bakery, finally reunited after 3 months of no bakery days.  I met my friend here for coffee and we chatted for an hour or so and now I am writing.  And guess what?  I don’t hate Kindergarten as much as I thought.  Turns out I like this free time.  A whole day to myself is exactly what it is cracked up to be – wonderful!  I have a ton of errands to run but I’m in no hurry.  I have time.  6 hours to be exact. 

Don’t get me wrong, my heart is still broken, well maybe bruised now.  I miss Jackson.  It is weird not to have him around.  I don’t have anyone to make lunch for.  I don’t get to hang out on the floor rolling around with my baby.  No afternoon cuddles.  It is a bit lonely and quiet without him.  Now he is riding a bus to and from school and having his own experiences without me.  That’s hard to adjust to.

It doesn’t matter if your child had special needs or is neurotypical, letting our children go off to Kindergarten and start a life of their own without us next to them all day is traumatic.  There are no words for the feelings that come with this experience.  But it is also what we all dreamed of for our children.  To grow and experience life.  Kindergarten is the first step to them starting a life of their own.  A rite of passage if you will.  Jackson will always be my baby, Kindergarten or high school won’t change that.  It will however change him.  He will become his own person, and I look forward to watching him grow and transform into who he is to become. 

As for Kindergarten, well I suppose it is not so bad.  Oscar Wilde said “The aim of life is self-development.  To realize one’s nature perfectly – that is what each of us is here for.”  And that is what Kindergarten is for too.

Ice Bucket Challenge

Unless you live in a cave chances are you have heard of the Ice Bucket Challenge.  This campaign has been going on over a couple of weeks now in an effort to bring awareness and fundraising to ALS (aka Lou Gehrig’s Disease).  Hundreds of thousands of people have participated, including me.  Recently there has been a lot of talk about how it is just a “fad” or “Why is it only for ALS?  Other charities deserve money too”.  Some have commented they are sick of the videos.  I get it.  The challenge has exploded into something I don’t think anyone planned for.  While everyone is entitled to their opinion, I am going to share mine in the form of a story.  It isn’t pretty or a happy feel good fluff story.  So if you want one of those I suggest you stop reading, now.  If you want a glimpse into what ALS is, keep reading.

My Dad and step-mom Sandy used to live about a ½ hour from me.  One summer we noticed Sandy was slurring her words.  Sandy insisted she was fine.  Dad and I talked about it a few times when she wasn’t around, we were both worried.  In addition to the slurring, she was stumbling a lot.  We thought she might have had a stroke.  She finally agreed to go to the doctor and he ruled out a stroke but didn’t have any idea what was going on.  She continued to get worse without any reason why.  Then my Dad died suddenly.  Sandy was living alone and I was worried about her so I tried to go over to visit more and we had her come over one night a week for dinner.  One night when she was here she tripped, 3 times.  She had become so unsteady on her feet, something was very wrong.  Another night she dropped her plate and chipped a piece out of it.  I still have it.  Every time I use it I think of Sandy and I say quietly to myself “Life is too short.”  It is a good reminder.  Finally, with the help of her brother and sisters Sandy started trying to find out what was happening.  I had been doing a bit of online research myself in an effort to find a diagnosis that might foretell what was going on.  At one point I came across ALS.  I remember briefly reading about it and thinking Sandy was really exhibiting some of the early signs, but there were other things she was exhibiting too.  I didn’t give it much thought.  Then she went to an appointment and the doctor mentioned ALS and wanted to take a chunk of muscle tissue from her arm to be tested.  That night I sat down at the computer and began learning about ALS.  After an hour of reading, I knew what was happening to Sandy.  And I knew she was going to die. 

A week later I took Sandy to the hospital for her surgery to remove the piece of muscle from her arm.  As we were in pre-op the nurse came in to get vitals.  Sandy told her she didn’t think she needed to do the procedure because she had a stroke in her mouth, not ALS like the doctor said.  The nurse looked at me.  I just smiled and shrugged my shoulders.  A stroke in her mouth!  That Sandy could come up with some great stories!  Later the nurse said that the doctors felt pretty certain it was ALS, I responded “So do I.”  A few weeks later the results were in.  It was ALS.

Sandy decided to move back to Colorado, her home, to be near her son and brother.  It was heartwrenching to have her leave.  I wanted her to stay so I could take care of her.  I found a retirement living center just blocks from my house and wanted her to move there.  She was determined to go home to Colorado.  One thing about Sandy was once she got an idea in her head there was no changing her mind.  Off she went to Colorado.  She moved in with her son and he began the gigantic task of taking care of her.  For a few months I would call and talk to her on the phone.  Then she lost the ability to speak.  So I would call and talk and she would just make grunting sounds back.  Finally I stopped calling, it was just too hard for me.  If you knew Sandy you knew this, the woman could talk, a lot!  Sandy was a talker.  Constantly asking questions, telling stories, talking to just talk.  Talk, talk, talk.  I guess if there was any solace in this it was that even though Sandy lost her voice she had talked enough for at least two lifetimes throughout her life!  To know someone as a talker, then watch them lose their voice, is a painful thing.  You don’t realize how powerful a voice is until it is gone. 

I tried to visit as much as I could, but with a child with special needs at home and a husband who worked full time it was hard.  Every time I visited I could see her body deteriorating.  At one point Kevin, Jackson and I went down for a visit.  It was during that visit I realized there wasn’t a lot of time left.  Kevin and I decided that Sandy had to be a priority and I would go to Colorado once a month to spend time with her and hopefully give Mike a little break.  By this point Sandy used a walker to get around and she had a feeding tube.  I always thought it was ironic that I had a child with special needs, but it was my stepmom who had the feeding tube.  I hated that thing.  Sandy was such a pistol about it.  She liked to control the valve, so I would inject the liquid food (which was stinky and sticky by the way) and she would turn the valve on and off.  I never could figure out if she was just messing with me or did it accidently but she would always turn the valve at the wrong time and the liquid would go everywhere, except into her!  She desperately needed that because the once stout little woman I knew growing up was as thin as a rail.  She was at least half the person I grew up with.  Her weight loss wasn’t the only thing.  Watching her use a walker was horrifying to me.  Sandy wasn’t a sitter.  She was always go, go, go.  My Dad used to say “Good god woman just sit down for 5 minutes!”  She was rarely ever sitting.  She was taking the dog for a walk, delivering Meals on Wheels, working at the Senior Center, working at the Senior Center Thrift Store, gardening in her yard, making dinner for the Eagles Lodge, going to Curves for a workout, running errands, volunteering at her church daycare, playing the piano at church.  Sandy was a woman on the go.  Watching her sitting down all the time and needing a walker to move around was awful.  My last two visits with her she was in a wheelchair.  Every time I wheeled her around in it I had to hold back tears. 

Sandy didn’t like to go out and about anymore except to the movies.  The 6 months before she died I went to see more movies than I probably had in 20 years combined.  On the way home she always wanted to stop at McDonald’s and get a cheeseburger.  Although she wasn’t supposed to eat or drink because she could choke to death she just wouldn’t give up trying to eat.  Even though I knew she shouldn’t be eating I would still stop and get the cheeseburger.  I can’t imagine never being able to eat again.  I knew it was hard for her to accept so I just went along with her.  She was dying and I wasn’t going to say no. 

The last couple of visits with Sandy I knew her life was ending soon.  She had become increasingly weaker and spent most of my visits just sleeping in bed.  Her breathing was more labored and the light was gone from her eyes.  The second to the last time I saw Sandy I sat down with her and said my goodbyes to her.  We both cried.  She knew it was coming and so did I.  On my last visit to see Sandy I brought Jackson with me.  She was amazed at his progress and kept clapping every time he sat up by himself.  She sat there just watching him and smiling.  She died two weeks later. 

I’ve left a lot out of the story because if I wrote it all it would be 10 pages long.  There were a lot of things that ALS did to Sandy.  It robbed her of so much and then took her life.  Watching ALS kill Sandy those last 6 months is something I will never forget.  It was incredibly painful to watch.  I have no doubt watching someone you love die from any disease is painful.  The sad truth is that I never really had heard anything about ALS.  I didn’t even know it as ALS, I knew it as Lou Gehrig’s.  When I tell people about Sandy and how she died, typically if I say ALS I get a blank stare.  If I say Lou Gehrig’s Disease they have at least heard of that, but most don’t know anything about it.  That’s what this ice bucket thing is about, bringing awareness.  While it is estimated that approximately 30,000 people have this disease at any given time in our country, it is a low number compared to the 50,000 a year diagnosed with Parkinson’s or the 15 million with cancer.  That is why this campaign has been so amazing.  How many of you had heard about Lou Gehrig’s?  How many of you knew it was known as ALS also?  How many of you knew what ALS was?  Have any of these answers changed since the campaign?

Estimated funding for research for ALS is $40 million, Parkinson’s $139 million, cancer is in the trillions.  While I get that the more people with a disease the more funding comes with that, I just have to say, when you know someone who has died from ALS, you want the same funding as others, you want the same recognition of that disease, you want people to know about it and to be motivated to do something about it.  You want their story told. 

So while some may be critical of the campaign and the recognition, I am loving it.  ALS is out there, reaching millions, earning millions for research and support.  I have watched countless ice bucket videos these past couple of weeks and every one of them make me smile.  It makes me think of Sandy, I wish she was alive to see them.  Sandy, I have no doubt, would want everyone to know about ALS and what it does to those who have it.  I know I do.  I realize that to some the challenge may just be a fun thing to do.  Fine.  Let that be it.  But to many it has brought ALS into the forefront and has earned the recognition of many.  So keep those videos coming, they bring me a little joy every day.  But most importantly take a minute to learn about ALS and the people that have it.    

He's Jackson, Not Polymicrogyria

I’ve read a couple of articles lately that parents and doctors have written about seeing the child, not their disability.  It is sad to me that these articles even need to exist.  It does bring up the discussion though.  A discussion that I have been secretly having with myself for a while now.  I have it pretty much every week at Costco.  I call it the “Costco People Meter”.  Is the world in a good place?  Is the world a negative place?  I get my answer by the looks Jackson gets while shopping and eating at Costco.  If we get stares and strange looks, then I know the world is in a bad spot.  If we get smiles, people stop and say hi and/or mention how cute he is, then I know the world is good and people are kind.  Mostly I have found the world is good but there have been negative days for sure.  Then Monday Jackson and I went to Costco.  Just a typical day.  And we found that the world was in a spectacular place.  Our typical trip to Costco turned into so much more.

When we got there the eating area was relatively empty so I wheeled Jackson up to a table to save a spot for us and I got in line to order food.  He was close to me so I could watch him.  I noticed a family a few people ahead of me in line.  I noticed them because they seemed really loving toward each other.  It was a father with 3 sons and a daughter.  All the kids were in their late teens, early 20’s.  They were all hanging out with their arms around each other and you could tell they were very close.  Their Dad finally went up to order food and the boys headed over to the table next to Jackson.  Then one of the boys saw Jackson, got up and went and sat at our table.  He said “Hey little man, how you doing today?”  I just watched.  Then another one of the boys came over to our table.  He saw Jackson’s drooling messy face (new teeth coming in), got up and went to get napkins, then came back and wiped his slobbery chin.  I laughed and thought “Who does that?”, it was such a kind gesture.  I got Jackson’s hot dog and headed to our table thinking that once I got there they would probably leave.  Thankfully they didn’t.  The first boy who sat down was enthralled with Jackson.  He asked his name and the whole family chimed in to say hi to Jackson.  He asked all kinds of questions about him.  How does he communicate?  How old is he?  What is his favorite food?  The mom finally showed up with her cart of food, came right over to see Jackson, gushed about how cute he was and how he reminded her of Dayton.  I asked who Dayton was.  Dayton is the best friend of the boy who sat down first.  That was why he sat down next to Jackson.  He said he reminded him of Dayton, who has cerebral palsy.  They told me how Dayton has been doing triathlons and even Iron Man’s with the help of a partner.  We sat there and talked the whole time Jackson ate.  I found out they had just flown in from Alaska, the older brother was getting married the next day.  The whole family continued to fuss over Jackson and comment on how awesome and fun he was.  Then they asked if they could have their picture taken with Jackson.  They wanted to have pictures with the cool kid at Costco.  We finally had to reluctantly leave the wonderful Alaskan family.   

Meeting this kind family reminded me that there are exceptional people out there that don’t see a kid in a wheelchair, they see a real person with love and happiness to share.  They didn’t see Jackson as broken or different.  They just thought he was a cool, fun kid.  Which he is.  Jackson has a personality, his sounds are his way to show his happiness, his sadness, his anger.  His laugh and smile bring inexplicable joy.  If everyone looked past that wheelchair they would be graced with the opportunity to spend time with an amazing person.  His life is valuable, it isn’t a second rate existence.  He loves attention, so say hi to him, even if he doesn’t say it back.  Look into those beautiful blue eyes of his and see what a great soul he has.  The kid just rocks.  He is the best gift I have ever experienced.  He is Jackson, a 6 year old little boy who loves Costco hot dogs and being tickled.  Just like a lot of other 6 year olds. 

If everyone would just remember what Wayne W. Dyer said “Change the way you look at things and the things you look at change” then I imagine those with disabilities would forever be accepted into our society. 

*Here are links to videos about Dayton and his first triathlon and his Ironman.

https://www.youtube.com/watch?v=bwwxBjpvDVQ

https://www.youtube.com/watch?v=4ggirkEUoPE