Posts Tagged ‘passages’

In which I do not let my Stuff overcome me

August 12, 2008

This past weekend we had a garage sale. I had never put one together, though I enjoy going to them immensely, so I had no idea what a lot of work it is. There is the sorting, the pricing, the moving and setting up of tables, the selling. Aferwards, there is more sorting, removal of said pricetags, the taking to Salvation Army, the contacting for donation, etc. And in my case, the posting of things that did not sell but should have to Craigslist. I still have to say, it was totally worth it. Yes, we didn’t make our first million by having the sale. But we got rid of a lot of stuff, we donated even more to good causes (All our baby stuff is being donated specifically to charities who deal with low income mothers). But what really gets me all excited is that I got rid of a ton of stuff!

Both Scott and I have this aversion to stuff. The problem is, I also am a big fan of “saving for a rainy day”. You know, the whole “I might need that one day” attitude. In my mid-twenties I started working vigorously to counteract my pack-rat tendencies. I had boxes and boxes of, well, stuff that I had been lugging around with me. Old college notes. Magazines. Too many books. After moving it for the third time and realizing that I never used any of that stuff, I threw out bags and bags of what basically amounted to baggage…things I didn’t need. Junk.

I try really hard to go through my things once a year or so and get rid of stuff. It’s more than just not having a place to store things. I ask myself: “If I had to move out of my house today, and I had only one day, would I be able to do it?” Maybe that’s extreme, but really, who needs half the stuff they have?

The hardest part of this was going through the boy’s clothes. I kept coming across outfits that I thought “Oh, I remember when Ben wore this and we did this” or “Oh, Toby looked so cute in this at christmas”….but why save it? I have pictures, I have memories. There are, of course, limited outfits we’ve saved. I allow myself a few. The outfit Toby wore home from the hospital. The PJ’s Ben wore on his last day here on earth. A sleeper that they both wore that was so cute I cannot part with it. But other than that, I purged big time…donated, sold, gave away. I don’t want all this physical baggage holding me back. I want my house to feel clean, to feel like we live here and can create memories here, not like our junk is keeping us here.

It’s hard to be sentimental (which I am, to a fault) and still be able to get rid of things. I don’t want to hold on to things simply because they are there but because I attach memories and events to them. I’m learning that it’s not necessary to have a physical reminder of events and memories, sometimes the memories are enough.

And when they aren’t, there’s always the scrapbooking to help me remember. The scrapbooking which now takes over a whole room in our house. *sigh*. I still have a long way to go.

Buddy Walk

July 21, 2008

Some of you have already seen this letter, but I know I missed some people. It’s Buddy walk time again. I set up our team page a few weeks ago, and it was more difficult than I thought it would be. Here is the invite to come and walk with us:

Dear Friends,

In the past, about this time of year, you have received a very upbeat Email from Scott and I inviting you to come and Buddy Walk with us during the Buddy Walk sponsored by the Down Syndrome Guild of Southeast Michigan (DSG), formerly Parents of Children with Down Syndrome. It has been far more difficult this year to set up our team page and write this invitation to you.

In February, after Ben’s death, it was our intention to join another family’s team and attend the Buddy Walk. We thought that maybe the two of us, and our parents, would still want to go so we could honor Ben and support the group we have come to love so much. Then as we began to tell people about this plan, we got this response “Well, we’re coming…” It dawned on us that we can still have a team for Ben, to honor him and come together in his memory.

The Buddy Walk, over the past two years, has come to mean a lot to our family. It is a time to celebrate Ben and how much we love him, to reaffirm that it is not his difference but his “sameness” that we adore. I know that this year many of you gave to some wonderful charities, including the DSG. Although donating to the Buddy Walk is something I would not discourage you to do, this year we feel it is more important than ever to come together and WALK; to affirm with our physical presence and attachment that we remember the miracle that was Ben, and the miracle of all children and people with Down Syndrome. We appreciate everything you have done, given, felt and come together for this year. We want to ask you to make room in your heart and your schedule to come together with us once a year to remember and honor Ben, not on the day of his death, but on a day that celebrates ability, love, acceptance and everything else that Ben’s life stood for. Please come Buddy Walk with us this year, above all others.

The walk this year is at Kensington Metro Park. The path is paved, and it should be a wonderful day. After the walk we will be having a picnic lunch, so bring something to eat and we can all sit together and have some fun. If you have given to the Buddy Walk in the past, you probably received a flyer in the mail. DON’T THROW IT AWAY….you can use it to get into the park for free on the day of the walk. This year’s walk occurs on October fourth. You can join our team by going to http://buddywalk.kintera.org/dsgsemi/benrandall. Please be aware that when you join our team, you will be asked to create your own fundraising page. If you want to donate, you can do so from that page or from the original “Ben” page…either one will work and both will count towards our team goal. Again, it is so important to us that we come together and walk. That is our fundraising goal for this year.

Thanks and we’ll see you on the fourth of October,
love,

the Randalls

July 10, 2008

The height of summer, for a kid like Toby, is a magical thing. Every day we go outside and he LOVES it. Toby really likes to be outside. We have to bathe him in sunscreen, because he’s so fair, but he’s willing to tolerate it because he loves the sunshine.
Last weekend we went to a friend’s cabin for the fourth. We had a good time hanging out on the boat, swimming, fishing, and relaxing. There are a few pictures at the end of this entry of Toby learning to swim. You’ll see that he has a really cool little float that allows him to putter around on his own, and despite some initial reservations, he was hard to get out of the water at the end. He also spent time playing in the sand, which was fun…but not for mom and dad as we had to remove the sand from his many folds at the end of a long day.
We’re still working on Teeth, and it’s coming along. It’s just going to be awhile, I know. He’s sleeping okay…but sporadically he’ll be up at night or not wanting to eat. Today I gave Toby a frozen bagel, and he really enjoyed that. We’re working on what he wants to eat, and I’m starting to offer him some things that are finger food-ish, like the Gerber puffs, bagel pieces, and biter biscuits. He really enjoys the biter biscuits, but they are so messy that they necessitate a bath when he’s done, so we save those for outside treats when lots of clean-up time is available.
This week Toby had a pediatrician visit for a check up. He weighs 20 lbs, 7 oz and is 29 inches long. We were taking bets on his weight, I was the closest with 21 lbs. Most of the family thought he would be much heavier. I think he’s growing out, though, not so much weight wise but length wise. Each day he looks a little different to me. We also switched to the “big boy” carseat. It’s a convertible one that will face the rear of the car still, but stays in place, unlike the infant “bucket” carseat. He’s just too heavy to be carrying around in the bucket any longer. AND…Toby has recently learned the joys of sitting up in the grocery cart, marking a passage into “big boy-hood”. He’s really coming along on sitting in general, and will sit propped up on his hands for almost a minute now, and he enjoys pulling himself up into a “real” sitting position to play. I can’t believe how fast he masters new skills and trys new things.
It’s been hard the past few weeks without Ben. I think that because we are so busy in the summer and have so many memories and so many big events it makes doing them without him harder. I’ve been having a rough couple of weeks here. This weekend is Scott’s family reunion, and we will be seeing many people we haven’t seen either since last summer or since Ben’s funeral. There will be lots of talking and remembering…though I enjoy this, it is very difficult to go through. It makes being there without him that much harder. I watched some home movies of Ben this morning, and instead of being difficult, it made me feel better to see him again. To watch his facial expressions and mannerisms made me remember good things instead of miss him. That’s a nice feeling. I’m so glad we have so many movies and pictures.
Some things about being without Ben are getting easier. We have moved a few things out of his room, and then left the rest of it pretty much as it was. Today I moved most of the toys and the toybox into Toby’s room, along with the rest of the books. It felt right. In their place is a large pile of garage sale things (we’re having one later in the summemr). There are still a few things in there of Ben’s, as well as my scrapbooking stuff. I want to work on Ben’s second year scrapbook in his room, not only because I can spread out, but because I like to feel that closeness to him.
Finishing on a positive note, Toby will be sleeping in the tent for the first time this weekend. You know we’ll have pictures and stories to post when we return. 🙂

Pictures of Toby swimming are here

June 28, 2008

Regular readers of this blog know that if there is one dirty word around our house, it starts with “T” and ends with “eething”. We thought Ben was Teething FOREVER….every time he was cranky that first summer we attributed it to teeth coming in, and we were always wrong wrong wrong. As with most things, however, Toby is another story all together. My poor guy has four big bumps on his gums, drooling has increased tenfold (if that’s even possible…this kid is a regular waterworks) and we are fussy fussy fussy. Don’t want to eat, cuddle, play, or do pretty much anything in the normal routine. The “best” part of all this is that if I understand correctly, this could be just the beginning and we’re really in for it. We’re using lots of frozen fruit, frozen washcloths, tylenol (only at night…if this goes on forever I don’t want to overmedicate him). He also has a low grade fever. Poor little tyke. Nothing to do but wait it out and go on. This too shall pass.

Last weekend I registered us for the Buddy Walk. More details will be following, I have to do this little by little. It was harder than I thought it would be to make the team page for “Ben’s Buddies” and get that whole ball rolling. Seems like even though it’s been four months, I miss Ben more now that I have before. It’s been a hard couple of weeks. We renewed our Cell phone plan today, and I got a new phone. I have pictures of Ben on my old one, and no way to transfer them to the new one. I know, I know, they make ways to do this. But I have an old phone that I just upgraded, and I can’t justify paying to transfer three pictures. Not when we have about 3,000 (no joke) on our computer of Ben. But still, they are pictures of him and it made me a little sad to realize I have to let them go. I have 3,000 other smiles, but letting these few go is still very very hard. Not to be mellowdramatic, but I don’t get any more, I’d like to save the ones I have.

I have been wondering for a few weeks now how the Buddy Walk will feel this year. It already feels bittersweet. I suspect it’s going to be a difficult day for us, but a good way to remember Ben nonetheless.

In other (happier) news, we went to a birthday party for my Grandpa last weekend. 90 Years old! Amazing. Shots of Toby hanging out with his adoring girl-cousins are below. We’re heading to the Cabin (belonging to some friends of ours) for the fourth, and looking forward to getting away, then off to the Farm for the family reunion. July is always so busy. Oh, and Scott turns 30 soon, but you didn’t hear it from me. 🙂

New pictures are here

It’s not PC, it’s just polite

June 10, 2008

One of the things I learned and reflect on often after having a special needs child is “political correctness”…it’s kind of the butt of a lot of jokes. I’m thinking about it today after a conversation I had with some people (friends of friends) that I met today at the weekly tuesday lunch.
Some people who have children with special needs, are handicapped in some way themselves, or face any number of challenges in this life view it as their mission…their urgent mission…to educate the world at large about the terminology used to refer to a specific condition or state of being. In the Down syndrome community, it is acceptable and “correct” (I hate that word) to refer to a child or person as a “child (person) with Down syndrome”. Saying a “Downs kid” or a “Downs baby” is not only kind of weird, it’s not really correct. Down is the name of the doctor who discovered Down syndrome (the state of having the syndrome discovered by Dr. Down)…so if you are saying “Downs kid” you are implying that my kid belongs to Dr. Down…who is dead.

What am I getting at? Well, the way I see it, there are three kinds of people in this world. The first group is probably the largest…I think that the general population is so beaten over the head with the “proper” way to act and the “right” thing to say that it almost makes them scared to approach anyone who is different from them for fear that they’ll say something offensive. I hold as one of my basic beliefs that people are really basically good and kind, given the chance. So when someone comes to me and we are having a conversation and they use the term “Downs kid” or “Downs baby” I usually don’t correct them. I DO make it a point to use “child (kid) with Down syndrome”, hoping they’ll pick up on the vernacular. I would prefer that people try to treat each other more kindly, recognize that we are more the same than different, and not be afraid to ask questions. I don’t want them to be scared, or feel pity for, or in any way look at the next person with DS that they see because I jumped on their case about terminology. And, as in most cases, the people who are the exception to this rule are in my family, and I”m amazed they still claim me as their own because I’m cranky about any number of things…including this, sometimes….I think they have to deal with me and my attitude sometimes; although I suspect there have been times my mom would have liked to have sold me to Gypsies after I had been particularly snappy to her. But I digress.

I think there is a very distinct second group who is similar to the first, with one major difference. A large segment of the population simply grew up during a time when people who were different were treated differently. I make a very concerted effort to use the proper terminology, but you can’t change someone who is eighty years old and grew up in a different time….they say things that are “politically incorrect” because at one time it was acceptable in society…

The third group bears only one or two sentences, and then I’ll move on. Some people are just stupid. Ignorance indicates you don’t know better, stupid indicates you do, but choose not to do better. So if I see someone calling my kid (or one of my friend’s kids) the “R-word”, or “mongoloid” you had better believe I speak up, and usually not in a nice way. Some people are just mean. I have heard the argument (usually from my students, long ago, before this really hit home with me) that they don’t use the word “retard” in a rude way, that they are just joking around. I hate that word. It’s mean and vindictive. I could go on about this third group, but it really just hikes up my blood pressure for no reason. Let’s move on and leave the stupid people alone.

I guess I”m kind of in the minority with the first two groups, I know lots of people who speak up and correct other people. I know lots of people with lots of clever come backs. I could go on all day about the things people say and assume about children with DS, and how parents handle it, but that’s not the point here. I choose to look at it this way. I had a conversation today with a guy who said to me something like this: “I haven’t known a lot of Downs Kids, but I understand that there is some difference in severity with Down syndrome, is that true?” So yeah, I could have said to him “Well, it’s children with Down syndrome, first off….” and finished my answer, but you know what? The guy probably would have felt like such a jerk he would have missed the entire rest of the answer. And that defeats the real purpose, the real education that can happen here, which is to tell someone who really wants to know about a segment of the population that I hold near and dear to my heart. So I told him that yes, there are differences in children with Down syndrome…that just like some typical kids like baseball and some like English, some are good at math and some at soccer, children with Down syndrome have strengths and weaknesses. Once you have DS, you have it…there is no “little bit” or “not having it that bad”, because everyone has that extra chromosome…but some show greater physical delays, some greater learning delays. You know what? We had a great conversation about Down syndrome, about what it means, and about what people with DS are like. I loved it. We talked about Ben, we talked about what a gift he was. And at the end, I think we both felt good about the conversation.

Let other people be the word Nazis. I’m going for what matters. I’m going for the substance, not the label.

long weekend

March 17, 2008

As I was driving to my parents on Friday to drop Toby off (since I work one day a week, he stays with grandma and grandpa) it hit me like a ton of bricks that it had been one month since Ben’s death. Longest month of my life. I feel like I should be writing about it, but I don’t know what to say, really. It was a really hard realization to take, made my day kind of crappy, and made my weekend kind of crappier. I sort of manage to shove stuff like this when I need to function (like on friday) then deal with it later – on Saturday (by having a hard time getting out of bed and getting moving). We had stuff to do on Saturday, and it made everything a little bit more difficult.

I’ve gone from feeling pain, just plain old emotional pain all the time to feeling like I’m some sort of zombie. I get through my day, I clean, eat, run errands. The only time I’m really “with it” so to speak is when I’m playing with Toby…he keeps me pretty grounded. The rest of the time I feel like I’m just kind of plodding through my life. Ben is all I can think about most days. I don’t know if I want this to stop (because I’m not living my life to the fullest extent) or not (meaning I worry I wouldn’t think about Ben as much).

After the funeral and other related activities, when Scott went back to work, I spent two weeks where I would go out and do something every day. Usually all day. Now I”m really trying to schedule time at home more…I have to be in my house at some point, and traveling around all the time isn’t all that good for Toby, I’m sure. But being in the house is still hard, I zone out a lot more when I’m around here. The only good thing is that Toby still demands a lot of attention, so I’m spending time with him, and that’s a welcome distraction from the Zombie-like behavior. I feel like I’ve lost the ability to feel a certain amount of joy in life…I’m ambivalent about so much now. I want my joy in life to come back, I miss it, but I think it will just take time.

We were at a baby shower for some good friends on Saturday. I had been planning for a long time to give them a copy of a book from Ben, it’s called “I can, can you” and depicts children with DS doing all kinds of ordinary things. I thought it would be a good way for them, when the time comes, to start talking with their child about Ben, how he’s the same and different, and what that means. I still gave them the book, and watching them open it made me all weepy, which made me feel like kind of a dork. But I figure that if anything, their baby has a really really happy guardian angel now, and that makes me feel really good. I guess that whole experience made me realize AGAIN how much Toby missed seeing Ben, and how much they won’t share together. It makes me a little sad.

Toby breaks Grandpa in

March 8, 2008

Thursday Toby stayed with Grandpa (my dad) for the day while I was at work. We had a conversation before I left that went like this:
me: “Dad, we just moved Toby up to a faster size bottle…so you have to feed him slowly. He won’t like it, but he’ll projectile vomit if you don’t because he eats so fast”
dad: “Don’t worry, we’ll be fine” (or some such)
me: “just take lots of breaks and burp him often while he’s eating…he’ll suck down eight ounces in no time and you’ll be sad”
dad “we’ll be fine”

When I returned to the house, Toby was in a clean outfit. I think that explains it all.

Toby’s night schedule has been off…for a few weeks he was consistently sleeping until five or six and getting up for a snack, then going right back to bed. The past few nights he’s been up at THREE…or just barely three. It’s like he’s a newborn again. And he’s HUNGRY…there is no waiting for the bottle. During the day he still goes three to four hours between a feeding (except last week when he grew and ate every two hours)…so everything else is pretty normal. I guess it will all work out. He still only wakes up once, and it’s towards early morning, so as far as I’m concerned he’s sleeping through the night. I can’t complain too much. 🙂

I went to a mom-to-mom sale today and found some AMAZING deals and cute things for Toby…not like he needs any clothes, but you know…he has to be cutting edge and stylish all the time.

There is a family near us that hospice referred us to that lost a son earlier this year. We have had their number and I have had a hard time calling…I don’t know exactly what to say when I make that call…is it appropriate to say “we both lost our kids”…I just don’t know. So anyway, the father called us this week and I spoke with him for a few mintues…he was a very nice guy. I think I would like to see them, maybe meet for coffee this week, Scott and I are talking about it. Maybe that would be good. I don’t know…it’s hard to talk to people we don’t know, and I am pretty sure that no one wants to sit and rehash their child’s death. So we’ll see how that goes. At least they seem like nice people!

One thing he did say is that they had a number of friends that had children of the same age, and now they have found themselves drifting away from those friends. I fear this happening. I am sure that there are some people that it will happen with, but I”m assuming it will be families we don’t know well…we’re friendly with them, but don’t know them well. I have a few friends that I met because of Ben and I am really hoping that our friendships will withstand this…mostly we have things in common other than the fact that our children had Down Syndrome, or they have children that are now Toby’s age. I have high hopes.

This week was a rough week. Let’s hope the coming week is a bit easier.

March 4, 2008

It’s funny to me, watching Toby, that having him really *is* like a first child all over again. I am totally fascinated with his development, and wondering when he will do things, not because I am worried he won’t, but because I want to watch the process in action. I feel like with Ben we saw each step of the process that yielded rolling, sitting, etc. With Toby, everything happens so fast. And because he is a different kid, things also happen differently. He has managed to grab something above his head a few times in the past few days, but he hasn’t “found” his hands yet (bringing the hours of entertainment that is watching fingers move). He is arching his back and moving onto his side, but I think he’s a long way from rolling. I feel relaxed about watching his skills develop, because as I told Scott, if he doesn’t do something, we know some really good people to go and ask about it. 🙂
Toby is SO social and interactive these days. He has gotten to a point where he will fuss while being held because he wants to be on the playmat interacting with us or looking around. He “talks” back to us with coos and gurgles when we talk to him. He is starting to anticipate events, for example when we play the “I’m going to get you” game he smiles and gets excited because he knows what will happen. We are getting small chuckles and giggles out of him, but no real significant laughter yet…I don’t think that will be long in coming.

I”m slooooooowly working away at Thank-you notes. Usually I enjoy taking some time now and then to write thank you notes to people, and I think that they are really a necessity when someone has done something kind…but the thank you notes for Ben’s funeral and visitation are taking me forever. I try to do a few each day, but it’s a task I dread. I don’t like feeling that way…I wish the time alone writing them was theraputic, that I would enjoy that, but I don’t. It’s bothersome.

A break in the clouds

February 28, 2008

Sometimes I do have days when I see myself moving on…remembering Ben and still being able to live life. Not because I am “living”, per se, the way I want, but because I realize what that will look like. For example, I did thinking today (in the car driving, because that’s when I do my best thinking) about the life we really led with Ben, and about how we made that decision to LIVE with him rather than wait for him to die. I commented to Scott the other day after reading through some older entries on this blog how LONG it took for us to really make that shift…that we said we were living with him, but we weren’t and had to be scolded (lightly) by hospice to start taking him out and get off the couch. Then we really did start going out, and we got better news from the Cardiologist…but I still see entries that are about what he looks like, what his color is, what he’s eating, how I interpreted everything as a sign of some sort. But somewhere there was a shift…and I see in my writing that we really did start living.

Then today I’m watching Oprah (because you know, I LOVE me some Oprah) and I hear these words from her guest: “A miracle is just a shift in perception”.

Sometimes these things just hit me and the Universe is trying to tell me something.

A miracle is a shift in perception.

What a gift we were given. Believe me, it’s not the first time I have said this, and it didn’t take recent events for me to realize it…I know and have always known that Ben was a gift….but the gift that I have only recently realized is that I was able to make that shift in perception…and really live with him. And that was when all the magic happened.

Fits nicely with some other words that have been echoing in my head all week, from Garth Brooks’ song “The Dance”…it’s not really one of my favorites, but I can’t help but realize how true the refrain is:

And I, I’m glad I didn’t know
The way it all would end
The way it all would go
Our lives are better left to chance
I could have missed the pain
But I’d’ve had to miss
The Dance.

February 27, 2008

A conversation I had on the phone today:

me: hello?
male voice: Hello, can I speak to benjamin?
me: I’m his mother
male voice: I’m from …[home health care]…I’m calling because I need to pick up an oxygen concentrator
me: yup, we have it
male voice: I’ll be there at [time], and what is your name?
me: Kimberly
male voice: the name on the paper is Scott Randall
me: yes, that’s my husband
male voice: *long silence*
me: Benjamin has passed away, I just want this thing out of here
male voice: *silence*…okay, I’ll be there in a little bit

When he comes to pick it up, I put Toby in his crib (more on disastrous nap time experiments later), and let the guy in. He spends FOREVER winding up the cord, checking out that everything returned with it hasn’t been opened, etc…all the while Toby is SCREAMING. I can’t go and get him because I don’t want to leave the guy alone in my house for a minute. I finally ask him if I need to sign the paperwork he has in his hand and he says “oh yeah”…then as he’s leaving he tells me to have a better day.

On the paper? Where it clearly says “patient’s name”? Is Ben’s name. next to that it says who ordered the machine, and it says “St. John Hospice”. What kind of idiot wouldn’t put that together and at least TRY to be sensitive?

I”m so irritable lately.