I'm writing today a post that (judging by the feeling in my stomach) will be more difficult that I thought it would be. Here goes.
I'm moving my blog. I may continue to post pictures of Toby here, but writing on this blog will be either severely curtailed, or stop entirely, starting now. I'm not leaving blogging, I"m simply moving to another blog platform. There are two main reasons for this, which I want to share with you.
First, and this is the least important of the two...I have found over the past two and a half years that I really enjoy blogging. A lot. I have always liked to write, and publishing on the internet has been a lot of fun. It's an instant way to record thoughts; faster than writing, more immediate-feeling. And though I have really loved writing about the boys, there is so much else going on in my life...the knitting, the crafting, things I see and hear on a daily basis that I want to comment on. If you know much about blogging, you know that Live Journal is really a community site. You can interact with a lot of people...but as far as starting a blog and joining the blogging community, it is low on the list of places to do that. There are other blogging platforms (like blogger, which isn't really a fancy place, but will do the job) that will provide me with a way to be a bigger part of the blogging community out there. I love to read blogs...but I don't comment much. I want to change that and become more a part of the online communities out there. I have some secret hopes, also, of looking for ways to take my writing a little more seriously. I have received some very lovely complements about my writing on this site, and someday I would like to do something with it. I think that writing and exposing my writing a little more will provide me with some nice feedback and comment from people outside my immediate circle. Maybe explore some places and ways to get my writing out there a little more and get some feedback on ways to improve.
Secondly...most importantly....this really is a blog about Ben. I have really tried to refrain, in the past two and a half years, from posting things off-topic, and to a large degree (with a few exceptions) I have succeeded in this. My decision doesn't mean I'll never write about Ben again, nor does it mean that writing about Toby isn't something I'll ever do again...it just means that there are lots more things I'd like to explore. I don't feel right about doing that here...It's Ben's place, Toby's place...not a place for me to write about the election (although I did already do that) or fall colors or knitting. It doesn't feel right when I'm off topic.
My stomach is in knots because making this decision feels, in some small way, like leaving a part of Ben behind. I don't plan on deleting this journal, and I plan on backing it up because I want to have these memories forever. Memories that aren't filtered through the lens of grief or time. But it's sad to move on. I have never been good at it.
If you visit my "new" blog, you will see that there are already entries there. They are a bit personal...I used this blog to write about some pretty dark days after Toby was Born and after Ben died. But you will see that there are few entries. I have tried for awhile to keep two blogs, and as the number of entries on the other will attest to, I failed miserably. I wanted a place to post things that were not Ben-related. Things that I was, honestly, kind of afraid to post. I realize now that although some of those posts are raw, they are also very honest and represent a very real time and real feelings. It's okay to put those out there. I don't know why I can post so honestly about Ben and his health and life and death and be afraid to put myself out there in the same way, but it is harder.
As for Toby, I plan on writing about him on the new blog as well. He's a huge part of what is happening in my life, obviously, and his milestones are no less important than Ben's. But if I want to write about life, I want to write about my whole life...
So update your bookmarks, readers. A new day is coming. As a kick-start, I've undertaking something truly fun (read: crazy and insane). I will be participating in National Blog Posting Month (NaBloPoMo), which encourages bloggers to post every day for a month. It takes place in the month of November. It's a challenge, to write every day. Even when I kept a written journal I didn't always write every day. But I want to get this started, so I"m giving NaBloPoMo a shot. For those of you who have known about my other spot on the internet, it's back so check it out again. You can leave comments, and read, just like here. It's just a step in a new direction. I hope you'll check it out. www.coffeemomma.blogspot.com
I'm going to try and overlook the fact that McCain stated in his health care plan that people with "gold plated health care plans" are getting "Cosmetic surgery...and transplants and the like". I'm going to focus on issues here. I'm going to try very very hard not to judge McCain on his foibles and mistakes.
I'm going to try and forget that McCain doesn't even know his own running mate well enough to know that her child has DOWN SYNDROME not AUTISM (unless they are diagnosing 6 month old children now). No, wait, I can't. I just can't. Consider this: Autism. Down syndrome. Are we really lumping everyone who is mentally or physically challenged together and using interchangeable terms? Really? That's not okay with me. It's just not. It's a symptom of a larger problem to me, not just a simple word mistake.
On the Today show this morning there was a piece on parents of children with Down syndrome who are voting for McCain/Palin because "she understands their struggle" and "understands where they are". I do not dispute this. I cannot deny that when I see that baby onstage a small part of me says "YEAH" to see the weight of Down syndrome awareness on the shoulders of that tiny baby.
But I believe with every fiber of my being that if you have a child with special needs, and you vote for candidate because they also have a child with special needs, you are doing a terrible disservice to the entire community and the political struggle for education and societal equality that is still going on! If I were Black, I would not vote for Obama because he is "Black like me". I would not vote for Hillary or Sara Palin because they are women. To do so is offensive and sets back everything that has been gained both groups. It discounts struggles that still exist.
In this country, the "N" word is, rightfully so, disgraceful and unacceptable. Calling a woman a "dame", a "chick", a "dumb bitch" is equally disgraceful and unacceptable. (Let's please not go into the debate about how these terms are used in circles of equals and accepted there...it's a valid point of conversation but not pertinent here). Yet in High schools across America, in work places, in colleges, on work crews, in homes people still think that it is okay to say "retard".
I'm a retard.
I just had a retard moment.
You are a retard.
Really? Is this okay? Is it okay to be demeaning to a segment of our population that cannot defend themselves?
In all fairness, this is not my original argument. You can see the original here:
This is only one part of the struggle that special needs families deal with on a daily basis. Health care, working because they have to when they should be or want to be staying at home, worrying about how they will get time off for surgeries, or to take a child to therapy or doctor's appointments....these are REAL issues. Worrying about sending your child to school, how will they be accepted? What kind of education will they get? Will they get left behind? Are they getting what they need? Do the teachers care or are they doing the minimum to get by? These issues are Real. Please do not tell me that instead of considering these REAL issues that affect your family you are going to vote for someone who is "like you". That is shocking.
I don't want to have coffee with Sara Palin. Even though, yes, I think she might be fun.
I don't want to have her over for conversation.
I don't want to vote for her because Trig has DS.
I want to vote based on issues. And I want you to vote that way too. I want you to vote your BRAIN, even though your heart tells you otherwise. Consider the issues. Educate yourself. Vote for the candidate that you believe will do the best job to put this nation on course, to provide for those who cannot provide for themselves, and make sure we are treated fairly...all of us...
OK, yeah, he got a little dirty, but whatever. He had fun crawling around on the driveway and the deck.
In the past week, we have seen some major changes in Toby, and it feels like they all happened at once. He's really and truly crawling now, and we've really started to childproof things. Scott and I feel that we take care of the things that will cause him immediate danger and go from there. We're using gates, plug protectors, putting on the cabinet locks. Then there are things for our own protection, monetarily speaking: toilet lock to prevent things down the tubes, VCR and Stereo guard because buttons are SO MUCH FUN. It is crazy to me that I've had kids for two and a half years, and now is the first time we've had to think about this.
In general, we try and let Toby do and explore what he wants, and watch him like a hawk. He's learning NO, in that we say it when necessary then redirect his attention to something else. It's working well....I want the redirection to be important. Letting him explore has led to Toby learning to climb stairs. Seriously, the third day he was crawling ( or so ) he did an entire flight of stairs with Scott right behind. Baby gates are important at our house since we have a tri-level and the house seems made of stairs.
Spent the past weekend in Philadelphia for a wedding. It was lovely, the weekend, the people...so much fun. It was a nice break to be away from Toby for awhile, my mom had him, but we were glad to get home to him. Surprise surprise. :)
This week, coming up to the walk, was harder than I expected. It made me miss Ben more than normal...and it hurt more to think of him than it has in awhile. Today was rough...seeing Ben's peers, other kids with Down Syndrome, how happy they were today as their friends and family cheered them on made me think of how much Ben loved the people in his life and how much joy he brought us.
There were bright moments and comfort to be found today also. A group of our closest friends and family came to walk with us. Scott's sister Jill surprised us by being here from Seattle (of all places!). After the walk we invited our "young friends" (a term which, unintentionally, hurt my dad's feelings) back to the house for Burgers and fun. Babies played. Much laughter was carried out. We talked about life and the past and things not important...also some things important.
I scheduled time with friends today because I thought it would be fun to do after the walk, and I probably knew unconsciously how much it would help. Being surrounded by people who love and care for us and for Ben was a million times better than coming back to an empty house with all those memories.
I heard a story on NPR the other day.... A woman spoke about a hike she had taken up a mountain. How when you climb a mountain, and we're not talking Everest here, just a casual hike...you only want to know about the top. She spoke about coming down after reaching the top and meeting some other hikers, a couple. The couple was obviously tired, hot and impatient. They were obviously arguing. The wife of this couple asked the woman coming down the mountain "It doesn't get much harder than this, does it?"
Now, this woman knew the next part...going up to the summit...was much harder. It was rocky and steep. There was a lot to go before reaching the top. But, she said, there are times in our lives when people don't want the truth. They want to be reassured. By asking the question, the person is not looking for a truthful and thorough answer, they want to know that things will be okay.
I think that life is like this. Sometimes I think to myself "The worst is behind me" because although I know that life always has surprises in store, some pleasant and some terrible, I don't want to know about them. I don't want to know that there will be days when it still feels like Ben has been gone only an hour, and the grieving is just setting in. I want to think that there will only be days when I remember him, love him, and am able to move through life normally. I don't want to think that in my future there are sure to be other losses, sickness, hard times. I want to know that the top is right around the corner and my Ben is waiting there for me. And the view is beautiful.
But here's what I think...having climbed a few mountains (literally and figuratively) in my time. The top is worth waiting for. On our honeymoon Scott and I climbed a mountain that had four false peaks. You would think you were getting to the top, only to look up and see more trail. It was hot out. The trail was so rocky and steep at some points we had to scramble up on all fours. But when we did finally reach the top, the view was so breathtaking...the wind was so strong...we looked down at the path and you know what? I couldn't point out the hard parts. I couldn't look at it and say "that's where I fell"..."that's the part that took me ten minutes"...all I could see was what was around me and I knew that getting there was worth it.
I'm not the first person to make an analogy about life being like a mountain...but I liked the commentary I heard this week and the point it put on the idea for me. I don't want to know how far the top is. I don't want to know how hard it will be to get there. I don't want to know if the hardest part is done. I want to know that what I'm doing is worth it, that there is a mountain top to get to...and that it will be a great view.
The appointment went very smoothly, Toby was a champ. The nurse/tech looked at him first, then put some drops in his eyes to dilate them. She said she definately noticed the drift (making me feel better, that it wasn't an optical illusion or figment of my imagination). Dr. Baker was great. We have a few friends who take their kids there (he's supposed to be the only/best in the area, and lots of our friends who have kids with DS take them there).
So the problem is not with vision (Toby sees fine) and not with muscles. He said there is a problem with the brain and how it tells that eye to work, it's just not getting the message to the eye to work as hard as the other. It's not unusual and not dangerous, and now is definately the time to fix it. We will be "patching" Toby's eye for two hours a day for the next two months, then we go back to the doctor. He said that the patching should help. He also said he is about 99% sure that Toby will need surgery at some point. The surgery is done at Children's and is an outpatient procedure. (Insert interlude where we sing the praises of Children's, tell him about Ben, and he reports he's on the board there).
I feel kind of stupid, after spending two years of my life "on top" of various medical issues that I didn't ask ONE SINGLE QUESTION. Seriously, I was like a slack jawed yokel. And now I have TONS of questions. How will we know if surgery is needed? When is it done? Is there a chance that the patching will fix this problem? And I need him to repeat the name of the condition slowly so that I can commit it to memory. I think I'm going to call today and ask for a return call so that I can ask some questions and put my mind at ease.
It doesn't matter that this is "common" or that the surgery is "usually harder on mom and dad"...I'm a little worried. I mean, for obvious reasons (this is my kid) and those that are obvious for our family (after everything we went through with Ben). For now we are going to focus on the patching and not worry about the future. I'm not really freaking out, but I kind of have a sick feeling in the pit of my stomach.
Don't forget the buddy walk this weekend, you can register on site on saturday if you want. I'm looking forward to it, but also being hit with a flood of memories of Ben. The greiving is a little stronger this week. I am looking forward to seeing some friends that we haven't seen, since we haven't been going to many events, but it will be bittersweet.
Went to the eye doctor today. I'll have the full post later, but for now, this is the result. We are "patching" two hours a day. Toby isn't thrilled with the patch, but he's been okay with it. Distraction (playing, standing, cheerios or the Bob) help immensely. It's cruel but we can't stop the pirate jokes.
Yesterday Toby switched up his regular routine (consisting of standing, pulling up on mom, more standing, and crying so mom will help me stand) by learning to push buttons on his toy phone and showing me he learned to play peek a boo. Hours of cuteness followed. I am so amazed by how much he learns and how fast he learns it.