An Open Letter to the Town of Ogden

My son was born with two letters in his genetic code that have handed him over to a slow untimely death.  First he stopped talking, then swallowing, then walking, then smiling.  Soon he'll get pneumonia, be doused in drugs and die of respiratory failure like our son who died before him.

Every day nurses come to help us out.  It's a blessing.  When they're not around my life turns inward and I become someone I don't recognize. 

The nurses park on the street because it's easier that way.

Today someone from the Highway Department informed me that no one is allowed to park on the street at any time from November through April.  When I said there were no signs he said there was one on a different street.  When I said that getting my son on the bus was a project, he said the nurse could move her car as well as anyone else.

This man has clearly not cared for a child in a wheelchair.

Tonight I took three of my kids to swim lessons but Christian stayed home because he was busy having a seizure and being suctioned.  I spend my free time changing my 10 year old's diapers, logging bowel movements, checking paperwork, absorbing opinions, and washing things soaked with urine.  I've lost friends because I had to learn to care when my healthy kids did things they shouldn't.  It never seemed that serious.

A nurse parking on the street was a small thing to make my life easier.  Sure my husband could wake up at 7 am and shovel a spot for the nurse, then go back and 8:30 and shovel for the wheelchair.  Certainly the bus could position the wheelchair lift so it wouldn't hit the nurse's car, or she could block in our minivan so as to not block the wheelchair's path.  Surely we could juggle it all.

But in the list of complications it was one thing that made my life a little easier and someone took it away from me.

Then right before bed I decided to look up the ordinance, which actually says that no one can park on the street from 7 pm to 7 am, which our nurses don't anyway.  Then I wondered why this man came to my door and just felt defeated.  In so many areas of my life I can take things as they come but as they pertain to Christian I fly off the handle.

I guess I'm just damaged that way.

In any case, Town of Ogden, your ordinance can be found here.  And as you're going door to door reminding people of this ordinance they may already be following, cut the people with ramps a little slack.  Their lives are complicated.

Power to the Paperwork

When my mom was going for chemo I was told that bringing my then 4 month old baby into the room was "dangerous" for the baby because of the toxic drugs they were pumping into my mom's body - a policy that seemed to be specific to this hospital.  I "appealed" to the director and she graciously gave me permission to bring him.  She said policies are meant to guide.

But not everywhere.  From what I can tell from the anxiety coursing through my home, nurses are constantly threatened with their license if they don't have exactly the right paperwork for dispensing medications.

For example, once Christian was home the doctor wanted him to be on alternating doses of acetaminophen and ibuprofen following surgery, which is the most standard of drug cocktails.  However, the orders were not written correctly, which was realized sometime in the middle of the night.  Christian did not receive the medication because the order wasn't correct (and some wires were crossed so I didn't know until the next afternoon).

Doctors seem to think nurses are OCD on this point and brush them off.  Nurses seem to think doctors are laissez faire.  But I'd like to point out who suffers.

Immediately after surgery Christian was in more pain that his paperwork could handle.  The nurse did not have the authorization to administer the medication he needed and had to insist that the doctor come bedside to witness his writhing, which took five hours.

I also can't help but wonder why a parent is considered capable of administering medications in their home, but not in a hospital.  When Matthew was sick we had gobs of narcotics I was trustworthy enough to not sell for a little extra income, but I can't give my child the most basic of medications in a hospital.

Which is all to say that Christian has suffered quite a lot at the hands of paperwork.  I wonder if maybe it's time we give a little power back to parents.

Spit Happens

MPS affects everything and one of the first things Christian lost, after talking, was the ability to swallow. When he got his g-tube I was pregnant with Caleb, which was just about 6 years ago. 

Everyone swallows 1-2 liters of saliva every day, so you can imagine what that looks like when you can't swallow. It's messy, and cough-y.

Christian has been coughing a lot and seeming uncomfortable. We decided to go ahead with a procedure called salivary gland ligation, which permanently renders the four saliva glands as non-functioning. You still produce saliva in other glands, but those are the big ones. We're hoping that this helps him be more comfortable.

While he was sedated, our dentist was supposed to have been schedule to work on his teeth but was not.  He happened to have a cancellation and raced across town to yank out 11 baby teeth, all on the verge of coming out and falling down his trachea. The poor kid...

He spent the night at Strong Hospital and was loved on by a rotation of family members and nurses while being neglected by doctors. He was pretty miserable for about 5 hours while his nurse paged the doctor three times for morphine. Apparently the doctors thought that ibuprofen would be enough??? He also had to be on oxygen for a while the narcotics wore off.

After that he was calm and Jason spent the morning at the hospital tapping his toes. Getting a person discharged can be a lot like leaving the earth's atmosphere. Or removing super glue.  Or getting a two year old to say "yes."

He came home around 1 pm today which makes Jason an official rock star.  Our nurses are taking care of him overnight tonight and he'll be home for the rest of the week recuperating.

We will also be recuperating among the piles of laundry, dirty bathrooms and stacks of mail.

When Christian Fell out of a Bus

by Debra Wallace

Jason looked out of the window and Christian was face forward on the wheelchair lift platform, essentially dangling out of a bus about four feet off the ground.  It took two struggling adults to pull him back inside. The substitute attendant had pushed him onto the lift platform prematurely (due to the bus driver's lack of communication with her) and wheelchairs don't do well on steps.

Image by BraunAbility

Christian had grate marks on his knees and his wheelchair was damaged.

You might think that the district would offer a formal apology or that the director of transportation might call us to see if he was okay.  Our pediatrician does as much when our kids have bee stings.  Instead, I was the one to call, Jeff Thrall the Director of Transportation who said, "Well, didn't the driver talk to your husband?" I guess if blaming the sub is talking, then yes.

If you are managing the people guilty of nearly dropping my son off a bus that perhaps you could stand to be slightly more apologetic.  A follow up phone call, letter or just an apology would be in order.

Not 48 hours later, the driver threatened to "report us" for where our cars were parked.  If he'd said this to my husband or I it might be understandable.  But his derogatory comments over the past year seem exclusively reserved for our nursing staff.

It creates quite a bit of cognitive dissonance to trust my child to these people.

Over the course of this year I have been sorely disappointed with the Churchville Chli Central School District Transportation Department, and for that matter, also the Office of Pupil Services.

It is my understanding that Christian has been late to school pretty much every day this entire school year.  I could be wrong.  His pick up time was around 8:50 am, and sometimes as late as 8:55 am when school started at 9 am.  There's no possible way that a wheelchair could make it from my house to a classroom in five minutes, or ten, or even fifteen.

I expressed my concern with Mr. Thrall, who argued for a while and then essentially ignored me.  Whether by fate or strategy a student was added to the route and his pick up time changed to 8:30 without notice.  I'm pretty sure he's still late every day, but it's more complicated to prove.  If his intent was to shut me up, I guess it worked.  At least until the wheelchair dropping.

I also expressed my concern to Dr. Whitney at Pupil Services, whom I had to call twice.  She told me she would call me back and never did.

I think he's being marginalized because he's mentally retarded.  I can't imagine the transportation department would be excused for delivering a healthy child to school ten minutes late every day, or dropping them out of a bus, or being disrespectful to their care takers.

I'm also deeply disturbed that the school district can so thoroughly ignore me about it.  Aren't I the one paying $5,000 a year in school taxes (or was it $7,000)?

If I were ever tempted to put my healthy kids in public school, all I have to do is think of Christian.  The Rochester City School District was thoroughly amazing.  Ironically, most of the people in our new development moved here for the schools.

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Do my kids need therapy?

by Debra Wallace

I have a confession to make - I have a masters degree in mental health.  I was going to be a therapist.  Does that make me more or less likely to seek out therapy for myself and my children?  Some people see therapy as something that benefits everyone, others will disagree.  

A book I read called "What Do We Tell the Children by Joseph M. Primo" challenged my thoughts on the idea that kids who lose a sibling need therapy (this book is so amazing it should be required reading for anyone who is alive).  His thesis is that death is normal, and only things that are perceived as trauma are things that should be seen as needing therapy.  Death does not automatically qualify a person.

So how are my kids doing?

My daughter leaned up against my leg as Matthew's body was carefully transferred to a gurney, covered, and wheeled out to a van.  She seemed more upset that she had to leave church early than that her brother had passed.  Her loss was not a playmate.  Her loss was not really a loss at all, because what she got after the grieving parents was parents who were more emotionally available to her.  At the time, Matthew was the sick brother who laid in bed all day.  There was no relationship for her to mourn.

Christian and Melody were the best of playmates.  Some of my happiest memories of Christian's early years is of the two of them playing naked outside.  We were trying to potty train Christian, and clothes seemed like a lot of work.

But one day as Melody developed and Christian declined, she began to realize that she was smarter.  She still talks about the day that Christian was walking down the ramp into the street and she grabbed him and brought him into the back yard.  I think she was four.

She took on the big sister role.  Gradually Christian slipped away and over that time she may have grieved.  But it's been a long time now since they played together.  Now Christian is the sick brother who is not terribly relevant to her every day life.

If a healthy child died - a brother who she played with every day, the loss would be very different.  But as is the case with a disease like this, if you needed therapy it would be at the beginning and not the end.

Do my kids need therapy now?  Not for this.  It barely registers.  

Do kids in general need therapy for the death of a sibling?  Honestly, I think they would benefit more from a culture that talks about death - where saying "my brother died" wouldn't evoke looks of horror and speechless people who then avoid you.  We actually had to tell her not to mention it to people, which turns my stomach.

Therapy is needed when a person's natural support network is insufficient.  Post diagnosis I scared away boat loads of people with my grief.  Kids are at risk of doing this too.  Let's be a culture that does such a great job of supporting each other that kids whose siblings die don't need therapists because we've made life a safe place to grieve.

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These Boots are (Not) Made for Walking

by Debra Wallace

If you should ever find yourself in a state of impaired mobility, let me tell you, you have some ceiling lifting fun coming your way.  

First, a brief shout out to walking which, it turns out, is vital to all manner of bodily functions including "stooling" and breathing.  Yes, if you can't walk, breathing is more difficult and you also get constipated.  Matthew died of respiratory failure related to not walking, after approximately 300 too many conversations with nurses and doctors about poo.  Our lungs like to move around, and so do our intestines.  When that doesn't happen, our bodies become unhappy.

If you should find yourself unable to walk in the state of New York you are in luck.  You can navigate your way through the web of government services, wait a Really Long Time, and finally receive a $9,000 ceiling track hoyer system.  If you live in the City of Rochester, this will feel like a government handout.  If you live in the Town of Ogden, this will feel like a small tax return.

Regardless of how this equipment arrives, it will be the best piece of equipment you own.  And fun to ride in too.

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A Love Letter, on Our Tenth Wedding Anniversary

by Debra Wallace

Jason and I waited to kiss until our wedding day.  On purpose.  It was one of the more difficult things I've ever done... or not done as the case may be.

(c) John David

The decision was made by Jason and I found it circumspect at first.  What self-respecting 20 year old guy would make that recommendation?

It was well thought out on his part and was based on the premise that it's easier to see a relationship for what it is without distractions.  Or as a friend put it, "kissing is always nice."  A relationship built on the foundation of the non-physical is hypothetically built on a stronger foundation than the physically entangled one.

There are exceptions, of course.

But I will say that it forced us to talk - a lot, and to take walks in the rain, and avoid awkward conversations without our clothes on.  In a relatively short amount of time Jason learned how to consistently beat me at Boggle and that affectionate comparisons between my hair and his dog's were best left unsaid.  

During that time, I realized that I didn't deserve him.  When I shared that with a friend she said, "No, you don't, and that's God's grace." 

But the major take away was communication.  Stress can do a number on a marriage, and over the past 10 years there's been plenty of it.  

Christian used to wake us up banging wooden bed railings with his feet and we would open the door to find diarrhea smeared everywhere.  Saturdays meant chasing hyperactive children around Strong Museum of Play to avoid the destructive, purposeless play we'd see at home.  Jason had to deal with me flipping out when I didn't get pregnant Right Away, and then through the joy and devastation of four healthy home births and five miscarriages, one of which nearly ended in a blood transfusion.

There were no shows from home health aids and nurses, hundreds of doctors appointments, court dates, four pediatric surgeries, thousands of unsolicited opinions, heated school meetings, and two children who forgot how to smile.  There was Matthew's death, moving to a new house, and welcoming a new baby in a four month time frame.

(c) John David

If I have a regret with regards to our marriage, it's that in my attempt to be transparent I have not given Jason nearly enough credit.  I read memoirs and not fiction, so as tempting as it is for me to enumerate our weaknesses, I'm going to hold off for now.  

What I want to say here is that a lesser man would have walked away.  He would have gone out board gaming with his buddies instead of coming home.  He would have escaped somewhere unreachable when it was most tempting.  Maybe he would have scoffed at my ache for babies.  But as I write, he's sitting in our bed writing a sermon which he'll preach on Sunday.

I'm blessed, because despite real life, or maybe because of it, our marriage has grown stronger instead of collapsing like it should have.  I'm not certain we would have made it if a 20 year old man with a whole lot of integrity hadn't said, "We're waiting to kiss until our wedding."

(c) John David