Reminders

Well hey there, cutie.  how are you?

Today a few things happened that led to the post you are reading right now.  First, I got an email from a friend asking about the Buddy Walk.  It was one of those moments when the TO DO list jumps right off the page and smacks you.  

Our Fundrasing page for the Buddy Walk?  It's been done for about a month.  

The blog post talking about the walk?  Not so much.  Also, emailing our past team members to let them know the date and page so they could register....unfinished.  So I started to get to it...I selected a picture...the one you see in front of you, as a matter of fact, and I posted it. 

Then I went to Costco because Hubby had promised me a hot dog.  A hot dog I did not get, I might add.  But I digress....again the Blog stood neglected.  

Then I was innocently reading a few blogs that I like, and this quote reminded me of my purpose today.  Let me share the quote I found:

"Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to a divine purpose. From the standpoint of daily life, however, there is one thing we do know: That we are here for the sake of others...for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received.”    -Albert Einstein

And so I'm back, to talk to you about the Buddy walk, and the purpose I have right now.  The purpose I devote myself to each fall.  The purpose of celebration, of remembrance, of love, of devotion.....the purpose of reminding YOU that I have some requests, and the reasons I must make them.   


Each year since Ben was born our family has participated in the Buddy Walk: a fundraising walk for the Down Syndrome Guild of Southeast Michigan.  Each year I remind you what a wonderful cause this is, how much the Guild has helped us out, and what they do for families who are raising children who have a little something extra in their lives.  I write about Tiny Man. 

We will walk again this year, and I know of some others who will walk with us.  If you've never been to a Buddy Walk, maybe this is the year for you.  There is no energy like the energy of this day....the energy of families who want you to know what their children CAN accomplish, the energy of children who want you to see them for who they are: kids leading normal lives, loving, playing, going to school, and along the way dealing with a few extra challenges. 

The Buddy Walk is nothing short of magic. 

If you choose to make a donation to our team, you will be supporting people who want nothing more than to lead a life like everyone else.  Your donation goes directly to an organization that advocates for equal treatment, equal rights, equal education, equal opportunities for people who have Down syndrome.  Your money is used to purchase equipment, fund educational endeavors, but most of it goes directly to families in the form of advocacy, assistance, scholarships, and education.  I have seen first hand what the money is spent on, and it is good. 

If you would like to walk, to donate, or just to learn more, please visit our fund raising page by clicking here.

If you have any questions about how to navigate the page (which can be tricky), or about Tiny man, or about what this is all about, please feel free to comment or to contact me directly.  

Thank you. 

Some musings on 3-21

Today is World Down Syndrome Day, chosen for the numerical date.  People with Down syndrome (DS) have three instead of two copies of their twenty-first chromosome, hence "3-21".  The past four years I have spent March 21st, and many other days,  reflecting on what Down syndrome has meant to me...

Some parents report that after hearing about their child's diagnosis of Down syndrome, they start to see people with DS everywhere.  My experience was exactly the opposite...part of my grieving process upon learning Tiny Man would be born with DS was to look around and marvel at the number of "NORMAL" people in the world...it was so shocking to me that most of the time, babies are born so typically, so normally. 

One of the many reasons I am so thankful we found out about Tiny Man's DS before his birth is because of this grieving period.  Hubby and I had time to deal with our feelings regarding DS before the baby came.  Given all the health issues and decisions that had to be confronted after he was born, I realize now that if we hadn't learned of the DS ahead of time, the amount of information would have been completely overwhelming. 

Given all that we had to deal with, health-wise, after Tiny Man was born, the Down syndrome didn't seem to be a big deal.  When we really started to see the effects on his development, we were just so glad that he was still with us...it didn't ever occur to me to resent the fact that he was developing more slowly or that he didn't do the things that other kids did.  His health issues always overshadowed his developmental issues.  We say all the time that we just did what he needed us to do, and we would have done that forever.  After all, he made it so easy for us to care for him and gave us such rewards in the process. 

Since Tiny Man's death, Down syndrome continues to be a big part of my life.  Some of my closest friends have children with DS, and I'm so thankful that I get to be a part of the lives of these kids.  I'm thankful that Toast has always known friends with DS, and hopefully always will.  I'm thankful that to him, these kids aren't different...they are just his friends. 

Many parents of children with Down syndrome say that their kids have taught them to look at the world differently, and I agree...but I continue to be reminded of this by children other than my own.  Down syndrome and my involvement in this community reminds me that people matter, not labels and not diagnoses.  It's made me aware of a larger cause, a larger community, and how people can change attitudes in others when they don't intend to. 

So happy World Down Syndrome day.  I have to admit that I didn't wake up today thinking about it, much like I didn't look at Tiny man and see Down syndrome every time.  I try to be aware and thankful of these things every day, much like I loved, and continue to love, my son every day; in spite of (and because of) his differences.  That?  That's what I'm most thankful for...what some see as abnormal is so completely normal to me.  Thanks for that. 

Talismans

I am fortunate enough to be the owner of a lot of really lovely shiny things that commemorate the birth and life of my Tiny Man.  When he was born I received a pair of earrings and a necklace in his birthstone from Hubby.  I also have a mommy bracelet that was made for me.  It, too, has his birthstone and his name spelled out on it.  It's not something I would have chosen for myself, but I wore it faithfully every day until Toast was born, when I received a second bracelet with both boys names on it.  I love them.  I also have a "B" on a silver chain, and few assorted bracelets made for me by hospice volunteers.  I frequently wear a blue and yellow rubber bracelet for Down syndrome awareness.  It's not dressy, but it's a daily reminder to myself and to others what one of my strongest priorities is.  My two favorite things are a locket I received at Tiny Man's memorial, with his picture in it, of course; and a necklace that is now my every day wear.  The second has two metal tags, each is stamped with a name...one for Tiny Man and one for Toast.  I love it....it was my "push prize" from Hubby.  *an aside*: I'm aware of the crassness of the term "push prize", but I made it abundantly clear to Hubby at the outset of our marriage that while I am NOT a girl who requires regular gifts of shiny things, it was of paramount importance that I receive the shiny gift of my choosing ASAP after bearing a child.  It's okay for you to think this is shallow of me, I don't mind.  I make up for it in other areas. 

The purpose of this post isn't to enumerate my jewelry collection for you, but to share how some of these things are significant to me.  I'm really not a dressy kind of girl.  These items aren't expensive, they aren't flashy, and they don't hold a whole lot of monetary value.  There are days, however, that I want to wear all of them at once.  If I didn't think it would make me look like some ridiculous mommy-version of Mr. T, I probably would.  They remind me of Tiny man.  Of what he means to me, and they are a way to help keep him present in my daily life. 

I have other Talismans too...but they aren't as visible.  These are the gifts my son gave me. 

I look at people with disabilities differently now.  It isn't that I was judgemental or rude before; I was simply uncomfortable because I wasn't sure what to do or how to act.  I didn't want to say anything wrong.  Tiny man did so much to draw people in to him.  Without a single word (he never learned to talk), he could draw a complete stranger to him, introduce himself, and hold a conversation.  A simple smile, a laugh...the twinkle in those eyes that were so blue I couldn't have chosen the color in Photoshop if I wanted to.  This gift of acceptance is a Talisman I carry with me every day.  It helps me to see people better, to laugh at life (and myself), and to accept imperfection. 

I worry less.  I'm a planner, and boy did I try to plan everything about Tiny man's life.  Before I even got pregnant I had a plan...when I would get pregnant, how it would work with my teaching schedule, when I would have to go back, what the baby would be doing at that age and how things would work out in daycare.  When he was born I tried to think of a plan.  There was none.  We made a plan, instead, of what to do if he died in the car on the way home.  Not the kind of plan I had in mind.  After several months, we started thinking about the fall...would I return to work?  Who would take care of him?  How would his health be?  I was so scared to stay home...scared of money (or the lack of it), scared of losing myself and my identity, scared of leaving my job, scared of being alone with him (though I didn't realize it at the time).  All the old adages about planning?  We all know them because they are all true: "we plan, god laughs"..."life is what happens to you while you're busy making other plans"..."the best laid plans of mice and men"...it's all true.  Instead I realized that if I stop trying to plan my life, I can actually live it.  I don't know what's going to happen tomorrow, or next week, or three months from now.  I can make sure I'm ready for good things (be frugal, stay healthy, keep an open mind)...but I can't plan.  It won't work.  Another thing?  When I stopped planning, I loved my life so much more...and I found that life loved me back and gave me gifts beyond what I thought possible. 

I'm more forgiving.  I know that in light of recent blog posts this may be difficult to understand, but it's true.  I'm less likely to bristle over an off hand comment.  I'm more likely to remember that people say things that they don't think through.  I try to remember that I can't control other people and what they think, and sometimes the best thing to do is just walk away and Let. It. GO. 

I've spent a lot of time this year, on the anniversary of Tiny Man's death, thinking about my Talismans...about how the lessons I learned from him still guide me.  He really is my star...and he's still with me every day...helping me get through this life with some grace and dignity.  It sounds like a cliche, but it's true that sometimes it's those who know the least that teach us the most. 

I miss you, buddy.  Every day.  Still. 
Love,
Mama

What's the meaning of this?

What does it mean to forgive someone who is not a part of your life?  I mean....not the guy that cuts you off in traffic or the rude person in the grocery store line...I mean someone who has done a personal wrong to you.  Someone who knew you so well as to use your insecurities against you in an argument, disagreement, or complete destruction of a relationship.  I don't feel the need to re-establish a relationship with this friend.  In fact, I think that my life has grown significantly since we ended our friendship...I"m not the same person.  I'm sure she isn't either.  Forgiving seems sticky, though. 

I'm not sure I can forgive without contacting her.  In some ways, this seems silly...I'm concerned with matters of my own well being here, so maybe there is no need to make contact.  I wonder how "real" it will seem to forgive someone when I'm doing it for myself?  Maybe this is another issue at the root of the problem; I have trouble forgiving because it comes down to the last word thing.  I don't want to contact her.  In order to forgive her, though, I need to get over the need to get the last word.  I need to remember that having  the last word is not the point.  Moving on is the point.  Letting go of the hurt is the point.  Last word will get me nowhere.

___

In other news, we have indeed entered the month of suck...full force, as it were.  This year the anniversary of Tiny Man's death seems a little easier.  I still miss him.  I still hate that this is an anniversary I would rather not deal with.  I can't help, though, but be aware of how amazing my life is, and how much of that is due to his presence...as short as it was.  I have amazing friends...a totally new circle of friends that are genuine, true...people I can count on.  People that are willing to count on me.  I have old friends that are comfortable, and new ones I'm so fortunate to have found.  The new ones are a direct result of Tiny Man...they all have children with Down syndrome and I would have never met them if it weren't for my involvement in the DS community.  They show me that friendship doesn't have to be hard, and it doesn't have to be dramatic.  They have shown me that friendships don't have to be old to be good.  They have shown me I am lucky.  They have shown me that people don't have to be identical to  like each other, care about each other, and be good friends...in fact it's more interesting when you're a little different.  They miss Tiny Man too, and that is an enormous comfort.  My old friends, the ones I've always known...they are checking up on me...reminding me they care.  I'm lucky indeed. 

This year I've chosen to try and remember Tiny Man positively.  I'm remembering the good things, trying to do little things to spread the word and raise awareness for Down syndrome.  It's still hard.  It still hurts.  There hasn't been a day this week I haven't cried.  I'm sure it will get harder.  He is so missed.  He taught us so much. 

Why is it so hard?

I've been thinking about forgiveness lately.  A lot. 

I read a parable a few months ago.  I want to link to where I read it, but I can't remember the site, or the book, or whatever medium it was.  I'm going to sum up and post it for you anyway, because it's relevant. 

Two monks are walking together on a road.  They meet a woman who is going the same way, and the three begin to walk together.  The woman is really not a nice person.  She's loud, boastful, and rude.  She is mean to the monks.  Still they walk on together.  Eventually they come to a stream.  The woman insists she is NOT crossing this river by herself.  She demands that the monks carry her, and they do.  One picks her up, the other picks up her stuff (which is a lot...she has a lot of stuff)...together they get her across the river.  On the other side, they part ways with her...she stands shouting and degrading them as they leave. 
After walking on for another hour, one monk turns to the other and says "I cannot believe you carried that woman across the river.  She was so awful.  She was so rude to you...and you did it anyway.  She was the most horrible person I've ever met!"  His companion turns to him and says "Brother, I put her down an hour ago.  Why haven't you?"

I've retold this story many times over the past months, and part of that retelling is me trying to work out my own stuff.  See, I strive to be a better person.  I really try to do good things for others and for this world.  The fact is, though...one thing I have never been able to change is the fact that I hold a grudge.  I have the ability to stay mad at someone for so long it is ridiculous. 

Honestly, most of the time I yell a little, recounting to Hubby what injustices have been done to me in a particular situation...then I'm over it.  Maybe I'll tell a few other people and turn it into a good story. 

I have one particular grudge, though, that I cannot let go of. 

A few years ago I had a friend I was extremely close to.  Without giving details, I will suffice it to say that our friendship didn't just fall apart, it exploded in an ugly way.  We were drifting apart, it hurt, and then it turned ugly.  The fault belongs to both of us; I have to say I did and said some things that really make me cringe now.  I didn't handle it well. 

But here's the thing: I can't let it go.  I know I had a hand in the way things ended.  I know that I could have handled the whole situation better.  But all I can dwell on is how hurt I was...how I needed my friend and she chose that time to pull away and focus on other things...other friends...her own life (which was, truth be told, in turmoil).  I was angry at her for not being there for me, angry at her for not letting me be there for her, and angry that our friendship, which I treasured, now seemed to mean nothing to her.  I'm still angry.  I'm still hurt.  I want to let it go. 

I know that letting this go means I need to forgive her for not being the friend I wanted, the friend I thought I had.  I also know that letting go means I have to forgive myself for the same things...for not being the friend I aspire to be...for not being the person I aspire to be. 

February is here...an online friend I have would refer to this as the "month of suck"...and I'm adopting that moniker from here on out.  I hate february.  I do.  Hubby and I try to fill the month with positive things; things like family and friends and memories that make us smile.  But the fact of the matter is that I cry every time I remember tiny man and how his death will always be linked to his birthday in my heart.  It makes me angry. 

So this year, the second anniversary of his death.  The year he would have turned four.  I'm going to try to be the person my son thought I was.  Kind.  Loving.  Dedicated. 

Forgiving. 

I've decided that I have to put this friend down.  I have to let her go.  I've decided that I can't apply the lessons Tiny Man taught me in his short life when I'm letting anger and bitterness hold me back. 

This is going to hurt. 

Update

I'm taking a weekend facebreak (tech break...need them now and then) but since I'm popping in, there is an update to the Hospice situation.

Hubby has been calling on this one.  He talked to Hospice yesterday.  Seems that in April '08 (two months after Tiny Man's death), insurance paid Hospice. 

In April '09, they requested the money back, saying Tiny Man had gone over his maximum lifetime benefit.  We think this is a max. benefit for Hospice care, but we're not sure. 

Let me repeat:

Insurance took money back.  From a hospice.  A pediatric hospice. 

The amount?  $283 and change. 

Pick your jaw up off the floor. 

I am so disgusted by this.  It's not even a huge amount of money.  Not at all.  And a year....A YEAR after payment, they took.  the. money. back.

Our system is broken. 

off the cuff

I probably need to calm down before I write this, but if I can't vent to the blog, who's left? 

We have been lucky to have good insurance (disclaimer: this is NOT  post about health reform....I'm purposely staying away from that until I HAVE calmed down).   We were very very fortunate that with Tiny Man and all of his issues, despite some heated phone calls with insurance, we did not have to pay for much of his care.  I know I am one of the lucky ones, and I can assure you that when I count my blessings, health insurance is near the top.  Considering all we've been through, we've had a remarkably easy time. 

That having been said, there are some things that have irritated me to no end.  A few months after Tiny man was born we recieved a bill from Children's Hospital for some of his care.  I knew it should be covered, but there were some issues since we had switched insurances from mine to Hubby's (when I decided to stay home my benefits were suspended, as I was "on leave" for two years).  It took SIX MONTHS and I don't know how many phone calls to insurance and to Detroit to sort it all out.  It wound up okay.

When we started therapy at a private clinic to help Tiny Man develop properly (Physical Therapy and Occupational therapy is common in children with Down syndrome), there were so many loopholes it made my head spin.  Do you know that most insurances will not pay for Physical Therapy for children with Down syndrome, because DS is incurable?  Therefor, they think they'll be paying for life (more $$ out of their pocket).  This even though therapy is PROVEN to help children with DS lead normal lives, and many will not need it after ages three or four.  Anyway, there was some careful tracking, careful wording on prescriptions, and careful careful evaluation speech to make it happen.  Could we have paid for it out of pocket?  Not as much as he needed, we couldn't. 

Since Tiny man passed, we've been receiving Explanation of Benefit statements from our insurance saying that things were paid or not paid.  We've received several saying that they did not pay hospice for the last two days of Tiny Man's life. 

Let me amend that.  It wasn't really two days.  It was EIGHTEEN HOURS.  Six pm on 2/13/08 to twelve oh six pm on 2/14/08.  Eighteen hours and six minutes. 

I guess hospice got sick of arguing with them, because today we got a bill. 

I don't blame hospice.  It isn't an astronomical amount of money.  It's less than we spent on Christmas gifts.  We can pay it, thankfully.  They do good work and they should be paid. 

But I"m angry. 

I'm just angry at a system that is charging me for what is very obviously the last eighteen hours of my child's life.  Any person could look through the billing history at the insurance company and figure out what's going on.  But they won't.  They haven't.  They just said no. 

I'm so angry, and part of me doesn't know who to be angry at. 

sharing

So a few months ago I got a letter from our Pediatric Hospice...the one that helped us take care of Tiny Man. They are starting (have started) an outreach program to explain what they do to the medical professionals, parents, and community that the come in contact with.

See, when you say someone is "with Hospice" or "on Hospice"...no one really knows what that means. I think that most of us understand that it means someone is dying. Does that mean that Hospice helps them? Cares for them? What if it's a family that doesn't have anyone else? What if it's a family that has...well...everyone they could possibly need?

I made a scrapbook about our journey with Hospice, and I wanted to share it here; mostly because it's something I'm very proud of (I think people who know me are sick of seeing and hearing about it). You can see the actual pages on my Flickr page starting here. The pages uploaded backwards, so the first page of the scrapbook appears last.....

So here is the journaling that explains what Hospice did for us:

______

Our son ** was diagnosed in-utero with Down syndrome and two cardiac defects. While the heart defects were not rare alone, they had been seen together less than twenty times. We spent the months leading up to his birth preparing for a high-risk delivery at Hutzel Hospital, and possible surgery after his birth.

After B was born we found out that he actually had three cardiac defects: a Truncus Arteriosis type I, Coarctation of the Aorta, and Complete AV Canal defect. In addition to this, his heart was slightly smaller in some areas, making fixing the defects a very tricky call indeed.

After discussing the options for surgery, and finding that B had very little chance of making it through surgery, much less living with a good quality of life afterwards; and finding that surgery would not guarantee a significantly longer life, we decided to enroll B in a pediatric hospice program, take him home, and live whatever time he had to it’s fullest extent.

Meeting with Hospice, planning for an end, is not what new parents expect. We didn’t even know what hospice was.

Hospice, as we found out, is family. They care for their patients medically, but it is so much more than that.

Illness, sickness, surprise, death, surgery, defect. These are the words new parents do not want to hear. Should never hear.

Hospice brought us normalcy. They emphasized that we had control. We had B. They did not dwell on fear, pain, suffering or the very real eventuality of B’s death. They encouraged us to live with our son, and to love him. They helped us bond with him in a very normal fashion.

We had power that had been taken from us when B was born “sick”. We were taught how to marvel at the little things new parents do, and forget the nightmare.

Doctors told us our son might, with luck, live two weeks.

Two weeks.

Together with Hospice, we knew B’s health was taken care of, and we were able to build memories of our son without being afraid; without being reminded of what was ahead.

But then we learned that B had other plans for his life and the people in it.
After two weeks had passed, B was just being B…living.
After three weeks, he was still here.

At one month, his doctor told us he was stable, static, and nothing had changed

At three months, we had him evaluated by Early On in our School System.

At seven months, he started physical and occupational therapy.

Two days before his first birthday, a birthday Ben was never supposed to see, he was discharged from hospice.

Then the fun began

B LIVED.


We took him birding, camping, hiking. He was showered with love. He met his entire family at family reunions. He went to school. He flirted with girls. He received therapy to help with the effects of his Down syndrome. He attended Christmas parties, weddings, funerals for friends, picnics. He went Trick or Treating. Twice.

In short…life was NORMAL.

Hospice gave us that gift.

We could have been afraid to do any of these things. We could have stayed in our house, worried that B would get sick. Worried that he was too frail.

Instead, we were taught that it was okay to be normal. B taught us to be brave, and strong, and to love the world and people in it; even in the face of enormous uncertainty.
On December 8, 2007 we welcomed B’s brother T into the world.
After T’s birth, B contracted one respiratory illness after another.
On February 20, after yet another visit to the pediatrician to deal with yet another runny, sneezy, sniffly day, we were told that B was in Organ failure.

Hospice was called on the way home, and they were at our house in less than two hours.

It was like they picked right back up; like they had never left.

We said goodbye to B less than 24 hours later, on Valentine’s day 2008. It was exactly one week before his second birthday.

In the hours, days, and weeks that followed, Hospice helped us with every last detail, from the nightmare of notifying the police of a death in our home, to planning the funeral, to walking back into an empty house.

They still visit with us occasionally, as we learn to navigate life without one of our guiding stars.

B’s life could have been full of
Anger
Blame
Argument
Uncertainty
Misunderstanding
Hospitals
Surgeries
Sterility
Sadness
Fear
Low expectations

Instead, B lived a life of
Nature
Home
Laughter
Love
Family
Friends
Learning
Playdates
Adventure
Certainty
And Miracles

Our whole family owes a debt to Walk With Me. They gave us the power to LIVE with our son, not wait for his death. In addition, that life was one of dignity.

So was B’s death.

Grief is never an experience one “gets over”, but when a parent loses a child, that grief is so very different, so much darker and more painful.

B has been gone a year and a half, and sometimes we behave as if he’s still here. Walk With Me gets that. They understand. Other people in our life, though filled with compassion, will never understand.

Hospice is like family. We would never have the many memories we have without them and what they did for us. We would not have been able to lift ourselves out of the initial bad news and bad scenario without them.

Thank you will never be enough.

______



If I could hug our hospice every day for the rest of my life, it is a task that I would happily undertake. Those people are angels, and they work magic. I owe our comfort and sanity, and the many memories we were able to make with our son to them.

So next time you hear about someone being taken home and put on Hospice, please know that they are living; and yes, dying, with dignity, respect, love, and family. They are the lucky ones who will not know fear of death.

We should all be so lucky.

I'm not late, you are

We're going to pretend that, instead of 9:11 on a Wednesday, it's actually still Tuesday. That way this post isn't late. See? Play along at home, friends. ;)

Just wanted to post pictures of a few scrapbook layouts I did at a retreat a few weeks ago. Since I get a lot of inspiration from scrapbook blogs and books, I'm trying to be better about sharing my work, which means I am trying to stop comparing what I do to what other people do and just be happy with preserving my own memories.

Anyway.







There isn't too much to say about the first, other than I am sort of fond of it. The second is the one I really like. It's a layout that probably won't be seen too much: one of both boys together, at roughly the same age. The journaling at the top says : "Brothers: 20 months apart. Pictures: 22 months apart. Cheese - Always fresh!" I was looking through some pictures of Tiny Man and realized that Toast's new desire to smile the cheesiest grin possible was something they shared. I love having these two pictures side by side....it's not often I see how much my boys resemble each other.

An aside: maybe I should make it a goal of NaBloPoMo to learn how to take better pictures of my work and not spend ten minutes trying to upload them to the blog. Just a thought.

Pointless?

Sometimes I have to do it. I open the files on my computer with Tiny Man's movies and I watch them both, all the way through. Then I move on to the home videos. It just helps, when I have some time, to remember him. It still hurts so much.

Face this

A few thoughts on Facebook have been rolling around in my attic lately.

Before I begin, let me tell you two things that I believe with my whole heart: Facebook is the new Myspace, and the internet is what you make of it. Number two is far more important than number one.

I spend a vast amount of time on the internet. I love all the different input I can gather just by surfing around. I love all the different viewpoints I have access to. The first 45 minutes to an hour of naptime every day is my internet time. I don't spend a whole lot of time on Facebook (though it might seem that way...I use twitter and it automatically updates my FB status). I love that I can check in and hear something about the day to day of other people. I love that I can have a little off hand conversation with them via comments and posts. I don't typically take the quizzes (though sometimes I'm bored enough to) and I'm not really into all the gaming stuff that's going on. I'm not going to join your mob war.

But, you see, I'm terrible with the telephone. I really don't like talking on the phone. When I was a teenager, sure, I talked on the phone a lot, but as I've gotten older I realize I just don't like it all that much. I would much rather meet a friend at the park or over a cup of coffee. I have several friendships that would be much closer if I were "good" at the phone, but I'm just not. I hate silence when I can't see what the other person is doing, and I tend to talk too much, interrupt someone else on the other end of the line, and feel all awkward. Facebook gives me the chance to have that back and forth with people I don't see that often. I really like that.

I have been able to get back in touch or stay in touch with lots of people via FB...former students, friends from High School...people I didn't really know well in High School. The weird thing about all of it is that I am "friends" with people I didn't really talk to much before, but have found online. This is kind of odd. I call FB the place to be "friends" with people I would much rather ignore. I have an acquaintance that I used to be very close to, had a HUGE falling out with, and now do not speak to. I feel awkward and bitter around her in real life, on the occasion we have to be together. Yet here we are, friends on Facebook.

One of the major things that gets tiring, stressful, and old; but is completely necessary, is this: Facebook is a pretty public forum. When you get back in touch with someone, you can post on their wall...which is okay....but then the question comes up. You know where I'm going with this: "Your boys are so cute! How are you? How old are they? What are you doing?" Then there is the obligatory private message with the explanation...the info about Tiny Man.

I don't really MIND so much...It's not that I think he shouldn't be talked about. It's not that I don't want to share. But it all feels kind of....well, oookey. "Hi, I haven't seen you in X number of years, and by the way my son died". Weird.

Easy solution? Delete the pictures of T.M. off my Facebook page. Dont' bother with the explanation. Focus on Toast. But that's not right for me right now. So I guess I have to live with the possibility that I'm making others feel awkward. I'm okay with that for now.

I don't know if I love the entirety of the Facebook idea, or hate it...but for now it's a tool that works for me, allows me to be a little more interactive and a little less alone when I'm home all day with Toast. There is a whole other post here about how our interactions with people have changed due to the presence of the internet in our lives, and I'm not ready for that yet. For now, the simple answer is the internet is good for me, and I try very very hard to keep it a minor but important presence in my life.

Snippit

I just finished making copies of Tiny Man's death certificate to send in with our Taxes. I had to do this because when we tried to Efile, our return was rejected with a note saying it was due to SS numbers. Our preparer suspects it may have something to do with Tiny Man's number and his death being recorded on SS records.
It's not that this was a big hassle, but I resent having to do it. It's not like I enjoy claiming him as a dependant knowing he's not any more. And I didn't really enjoy making copies of a document I'd still rather pretend didn't exist.

Thank you, Universe, for conspiring against me today.

And I swear...if they audit us for this......

Fun with Music

A few years ago, I wrote on my other blog about Tiny Man's playlist. Music is really important to me, and I made a playlist for each of the boys when they were born. I have added to Tiny Man's over the years, and plan to do the same with Toast's. Today I found a really cool feature on iTunes where you can publish your playlist. The iTunes store will then make that playlist available for one year so you can share it with family and friends. The only catch is that not everything on Toast's playlist is available, so I've put the whole thing below. The iTunes version can be found here.

Songs for Toby (song name; album name; artist name)
The Storms Are On The Ocean; Ollabelle; Ollabelle
You Got Growin' Up To Do; Simple Times; Joshua Radin
I Don't Know Why; Fat City; Shawn Colvin
Gypsy; Suzanne Vega
On a high; Daylight; Duncan Sheik
Love; The Story
Sunrise; Feels Like Home; Norah Jones
Ordinary Miracle; Charlotte's Web [2006 Score]; Sarah McLachlan
The One Who Knows; The Beauty Of The Rain; Dar Williams
Roots And Wings; Roots And Wings; Linda Hirschhorn with Vocolot
The Water is Wide; James Taylor
More Time; P.S. I Love You; Needtobreathe
Love will Come to you; Rites of Passage; Indigo Girls
Breathe; Faith hill
For You; John Denver
Pass On The Love; Spike & Co.: Do It A Capella; The Persuasions
When You Say Nothing At All; Allison Krauss
Godspeed (Sweet Dreams); Home; Dixie Chicks
On Children; Sweet Honey in the Rock
Everlong (Acoustic); The Color and the Shape ;Foo Fighters
Beautiful Boy; John Lennon
Lullaby For A Stormy Night; Waking Hour; Vienna Teng

On a random friday...

Just a few random things I wanted to jot down today.
There is a road near my house that meanders through some lovely woods next to a lake...I drive it quite a bit as I'm out and about. In the spring...early spring...I love that before anything else greens up, there are carpets and carpets of these beautiful little blue flowers. I've never gotten close enough to see what they are, but to me they mean spring. I lived around here three years before my mom pointed them out to me. She saw them on the way over to our house to visit when we brought Tiny Man home and things were so uncertain with his life. Now when I see them they always remind me of him and make me smile. It means winter is over and spring is here.

We are going for brunch on Sunday with hubby's Grandmother (Nana) and various members of his family...a fine tradition in his fam. Tomorrow I'll be making an Easter dinner for MY family here at our house. I LOVE making big dinners and having everyone over, even though it means I'll be exhausted by the time it's all over. Our house is tiny (by today's standards), but perfect for us, and I love to have it full of people we love, even when we're all crammed in like sardines!

Why was it that I was so good at budgeting for Christmas, and yet getting items for Toast's Easter basket has turned me into a spending freak? It's not like I've broken the bank here, but I have gotten him far more little treasures than he really needs...but they will be so much fun for him! I can't wait.

Have a great weekend, everyone, and Welcome Spring!

I have to talk about this.

I've written a little about my feelings on language and perception regarding people with Down syndrome and other developmental disabilities. When I did so, though, I was talking more about issues that are different than what's on my mind today...

...when I was teaching, it used to really really get me when kids would use the word "Gay". "That's so Gay, you're so Gay, how Gay". Just drove me up a WALL. I would call them on it, each and every time. Some smartass would always say "it means happy!" Another teacher I knew had the BEST comeback for that. She would tell them "Oh, so one genius learns how to use a Thesaurus and now you're all excited!" She was an English Teacher. It was a great line. Likewise, I hated when kids would call something "retarded", or call each other "retard". We actually had a student once who auditioned an act for one of the school's variety shows where he portrayed a mentally challenged man sitting and waiting for a bus. Muscular tics, facial expressions, speech patterns, all of it.

He didn't understand why his act didn't get in the show. Really. He didn't get it.

This is my issue. People don't get it. "Retard", to most people, isn't mean. I understand that in the original context, the word is not meant to BE mean. It means slower. I get that. But the way we use it now? It's mean. It's hurtful. And people don't get it. Kristin Chenowith, an actress I greatly admire, referred to herself as "one of those retards who starts playing Christmas music in October" on the Today show this past holiday season. Really? That's okay?

Here's what you need to get: the word is offensive. When you look at someone doing something stupid, something without thought, something they should know better than to do, and call them a retard? Yeah, that's offensive. You just compared someone being purposefully dumb to my oldest son. He isn't slower ON PURPOSE. He's just slower. He didn't learn to crawl or walk. Not because he knew how and decided not to, not as a joke, not because he made a stupid error. He did it because his growth and development were, let's use the word as it is supposed to be used: retarded. Slower. Not dumb. My son was not dumb. Not stupid.

I think people don't get that THEY might not be offended by a word...but THEY have no reason to be. They are not the one who is developing slower.

That's why, when reading an online friend's blog today, I was so happy to see this. And this. And finally, this.
Please, click through. Take a moment. I will, as bloggers love to say, wait.

Done? Okay. Thanks for looking.

Today, March 31, has been designated as a national day of awareness by Special Olympics. "Spread the word to end the word". Please, people, take a few minutes to pay attention to your own language, maybe for the next few days. Did you use the "R" word? Could you have avoided it?

Tell you what. Next time you feel compelled to use that word, consider this:This is my Tiny man. He and his brother are the light of my life. I love him and I miss him so very very much. When you use the word retard, you are negating every single thing he accomplished during his life. You are ignoring the struggle, the miracle, the magic of a little boy who just wanted to live life joyfully.

Let's just think a little, okay?

Think about that next time you use "the word".

525,600 minutes

Dear Ben:
I can't believe that today marks one year that you have been away from us. I feel a little sick today thinking about how much you are missed....how much I miss you...how much we all miss you.

Although you left behind an emptiness in our hearts, life does go on, and it won't wait for us. Your daddy and I have done our best to be present with your brother, to love him and not let our grief get in the way of that. It has been hard. We wish so much that you were here to grow up with him...to be brothers.

I still find it so hard, so often, not to talk about you. I still bring you up in conversation as "my older son" or "my oldest son". I think you will remain so for a long time. It brings up some uncomfortable moments, then, when people ask where you are...usually strangers...and I have to explain. This could so easily be avoided by not talking about you at all, but how is that possible?

You see, Ben, even though we miss you and are sad, it is impossible not to speak of you. To smile when I tell people what a miracle you were...are... I still find myself wanting to tell people how incredible your life was. How you were not supposed to live, and yet you not only lived (in the biological sense), you LIVED (in the joyful sense). I cannot describe to people who never met you how amazed I still am at your joy, your smile, your life, your determination.

And there are things I will never be able to tell anyone about...things that mothers understand. What it felt like to hold you for the first time. The feeling of your hands on my cheeks when you would pull my face to yours and laugh. The sound of your laughter. The sound of your morning song. The weight of you in my arms. The feeling of holding you that last night...at two am...listening to your breath.

And there are the things that so very very few understand...Living with the knowledge that your child is not yours....people say they know this, but it is different for those parents who get the news your dad and I did. The determination it takes to grit your teeth, overlook all the frustration and fear and forget your emotions when talking to a doctor, a specialist, a nurse, a pharmacist, a teacher. Explaining again and again and again what is "wrong". Explaining again and again and again that there is nothing to be done. The feeling you get when you are comforting someone about YOUR own child's condition...when they look at you with that look that says "how do you live with this?" What it is like to feel the weight of a soul leaving the body.

I know these things.

People who have lost someone say they will never forget...and I can say the same. But it feels silly to say that, knowing as I do that it's not like there is a choice to forget. You are a part of me...like my own skin. I have no choice but to remember. I am relieved that I remember. There are, however, things that slip away...your smell, the feeling of your hair on my fingers. I fear that over time I will forget things I would rather not..like the sound of your laugh or what it was like to hear you sing.

Today and tonight we will light a candle for you, Ben. We will do the same next weekend on your birthday. We light a candle to remember you and remember how much we love you. Today is not a day for me to have to be strong...today I can just feel, and remember, and love you.

We miss you so much, Tiny Man.

C'mon spring!

Now that all the snow is gone, I find that I"m just completely disenchanted with this whole winter thing. I mean, I live where I do because I like winter...okay, it's not my FAVORITE season, but being a homebody and all, I love being able to curl up in my house and putter all day while the wind and snow and cold rage outside. I love cooking comfort food and feeding Hubby with it. I love knitting in front of a good DVD. I feel guilty doing any of this in the middle of the day when it's "nice" outside and I should be out soaking up the sun. But this week? yeah. The snow is gone and so is the love. Let's get a move on, spring.

We've been in the house completely too much lately...most of the week, actually. The plus side of this is that I've been a bit...well...compulsive this week, so the house is clean and pretty. The down side is that the house is now clean and pretty and I'm STILL IN IT. I need to get out. I sense a trip to...well, somewhere this afternoon to get out of this place. Toast and I did go for a lovely long walk on monday (that coupled with the cleaning earned me more than a few activity points for my weekly Weight Watchers total, let me tell you), and that did help.

I think part of this whole cabin fever thing is the aforementioned weather, part of it is the timing...this week marking the one year anniversary of Tiny Man's death. It's been a rough time. We were supposed to go to a memorial service last saturday, but did not due to the extreme migraine I had all day. To answer the question, maybe it was caused by tension and subconscious...I don't know. I do know that I have very mixed feelings about missing the memorial. On one hand I really would have liked to have gone....but our hospice team is still making visits, so we see them regularly anyway. And the timing for us, the weekend before the one year mark, was very poor. So maybe next year we'll try again.

I spoke to a friend this week about anniversaries like the sort I'm experiencing now. She asked if I was remembering everything from this week last year, and the answer is yes. I remember what I was doing with Tiny Man each and every day of this week last year. It's so vivid it almost scares me. We have made plans for this weekend and next to be out of the house and with family, and I think that this is a wise decision. I"m looking forward to it.

Perhaps some thrifting at salvation army this afternoon.....

Sensitive new-age man

I lost my wedding ring last week. Yes, I panicked...looked high and low, etc etc. It was missing for a week and we found it yesterday, so balance is restored in my world. But that's not the story.

When I found my ring, I had been so worried about having lost it, I started to cry. I couldn't help it...I was so glad to have it back. Toast leaned out of hubby's arms, into mine, wrapped his little arms and legs around me and laid his head on my shoulder. "It's alright, mama," I could feel him thinking.

I just got off the phone with our hospice nurse...well, her voicemail. I"m trying to set up some visits to help us get through this month of anniversaries, and I had a few questions about the memorial service for all of the kids hospice served who left this earth in the past year. I couldn't get through the call without crying. Toast looked at me, so concerned, and when I picked him up...from a sea of toys that he had been decimating ten seconds before...he snuggled in and laid his head on my shoulder. "It's alright, mama."

I know, my man, I know.

plugging along

Cannot. Kick. This. Darn. Cold.

I was in the store the other day and it was snowing outside. The woman in front of me was saying how she just wasn't ready for snow....it just snuck up on her. This is the one year that I feel totally ready for snow, and cold, and Christmas. I'm ready for the seasons to change. I don't know why...I mean, this year is going by so much faster than I am really ready for. I think I am, for a few years, going to be measuring the years by the anniversary of Tiny man's death rather than by the coming of January first. I'm not ready for that first anniversary, and it's bearing down on me at an alarming rate. But the coming of winter, somehow, is something I'm welcoming.

I've always enjoyed living in Michigan because of the seasons. I cannot picture living anywhere where there were not four distinct seasons...even though we have the horrible humid summers, the icy and treacherous winters, the long slog through February and March; when the world is one big bucket of cold miserable slush. I love the icy beauty of a January day after it snows six inches and the temperature drops so even the sunlight looks like icicles. I love the fall colors. I adore spring mornings when it's warm and the world is full of smells again. I can't imagine not having all that, even though I'm sure that the passage of a year in other places is amazing in it's own right.

This year I've come to mark the time passage in other ways. I've realized that instead of marking off the months in terms of school...the beginning, parent conferences, Christmas break, winter break, spring break, finals...I'm measuring time by watching Toast grow and change. The first year of life is an amazing thing. He's gone from a lump of poop and cry to a happy little person who changes every day. Some weeks he changes so much it's impossible to list all the new things that have happened. Watching a child develop is so crazy amazing and interesting....it's very difficult to put into words.

Tiny man's development was amazing for what he accomplished, through struggle and hard work. Through determination (ours) and stubbornness (his), he really did meet milestones and grow up. It was fascinating in that we saw all the stages, every little thing that had to come before every other little thing. Toast's development is equally amazing for it's speed, the things that just seem to happen overnight. So different, all so amazing.

I'm also measuring time now by greif and recovery. By measuring how many days I go between the sad days, by how many months I have until I mark a year my Tiny man has been gone. Saying goodbye is not a quick thing at all, it happens for a long time after someone you love is gone. You learn to say goodbye in a million small ways and hope that wherever they are in the universe, they hear you. I hope that the next year I can think of the passage of time in terms of healing, instead of lessoning of greif.

Perhaps I should have thought about this...

Our DS parent support group has put out a calendar full of pictures of our kids...the calendar is beautiful (I'll post a link later where you can view it, if you want). Anyway, Ben is on a page in the calendar and tonight there was a big gala at a local art gallery to celebrate the publication of the calendar.

I didn't think before going that it would be difficult. I didn't really think at all, I just said I'd go. It was awful. I mean, seeing everyone, our friends and new parents and all, that was great. But seeing all the kids made me physically ache again. Made me miss Ben so much it's a physical stabbing pain in my stomach. We stayed about an hour and I managed to make to the car before losing it.

I'm going to have a large glass of wine and watch something that will not require thought.