Monthly Archives: April 2011

Who ordered the bleeping snow…

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Seriously? Seriously? Snow? The last few days of April?

Oh, well, my flowers will be so pretty.

I think moving is as contagious as marriages and weddings. We have had some friends do the Ken Caryl shuffle lately and it got me thinking. With the move of the program from Shaffer, the reason we bought this house no longer exists. So, do we move? I grew up moving around every year, so when I spend too much time in one place, I get itchy feet.

Last night Hugh and I talked about my itchy feet. Last night he said, that I treat Colorado as a temporary stop, even though I have lived out here for eighteen years. And we talked about what Danny needs. The winters out here are so hard on him. So, the plan over the next couple of years, is to find an investment property in a sleepy beach town to set up Danny and I snow birding during the worst parts of the winter. Location is important, it needs to be fairly close to a major hospital if we should ever need it.

So, on zillow I hoped and started in Texas and worked my way around to South Carolina. 🙂

He’s right, we need my version of a ski condo. A place right on the water, with a pool. Probably a condo, because I won’t want to maintain it. Danny and I both love the water and especially the warm. That’s today’s plan. I am sure it will change a few times over the next few years while we nail down a location.

So, we have a plan, for now…

“god won’t give you more than you can handle”…

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I was on Facebook this morning and there was an online conversation about the phrase “God won’t give you any more than you can handle”

I hate that phrase. It makes us sound like we are somehow stronger and more special than the average mom. I am a mom. I have my good days, I have my bad days and I don’t particularly believe in God. There I said it…

I have seen women hold their families together with nothing but determination. In the face of what would seem to be insurmountable obstacles, I have seen moms just jump over them like they were nothing. I have seen women defy everything the doctors tell them.

And I have seen families crumble. I have seen what happens to people and their children when they can’t take it.

I wish I could tell you that there is a common thread between the people who “make it” and the ones who don’t. It would be convenient to say, it is the people with faith who manage to power through. It isn’t. I have seen people of all levels of faith (and even many with none) get up each day and do what needs to be done.

And I have seen all levels of faith completely crack and walk away from it all.

So, why do some make it and others not so much? I don’t know. I wish I did. I think having an explanation might make it easier to power through on the really hard days.

I envy people their faith. I envy the comfort they get from it.

But I don’t see where having the faith automatically helps them handle it…

I don’t think Jack will grow up to be a cpa…

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Yep, I am not making it to book group tonight, shoot. I’m not making it to Shaffer’s fundraiser either. I have my feet up and I am sitting on my back porch. Hugh offered to bring me a beverage and allow me to take the evening off even though I am still here. We are hoping that helps Danny. Hugh thinks he is missing me, when he has fallen asleep the last couple of nights he was asking for “mam”

So that’s the good news. While he is not saying a clear “mom, mom, mom, mom”, it is still pretty close. That really made me breathe a bit easier, I didn’t realize how much it was bothering me because he was so quiet, but my husband sure did. Must be why he hasn’t been teasing me about painting the walls white like he typically does.

Jack had fun with Dad this afternoon. He really likes the idea of a family business, but I am pretty sure this afternoon convinced him he doesn’t really want to be an accountant when he grows up. Phew… Jack will make his fortune creating something. This is the same kid who would roll out butcher block paper and create cities. Not just a house with a road and a couple of trees, his drawings included airports, skyscrapers, grocery stores, banks, library, ect. I have saved a couple, they were super cool. More recently, he would create board games, complete with rules, cards, and dice. I am hoping to retire on the small amount of money he kicks down to mom and dad when he strikes it rich.

Dan just socked out. Hopefully when he wakes up in about an hour and realizes I am here, he will go back to bed. We can hope, right?

I wonder if Hugh has forgotten about the beverage… time to hop up, pour myself a small glass of wine, grab my book and a blanket, and enjoy the lovely evening without the wind…

Yawn…

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At least today is supposed to be lovely…

Ok, just repeat the last few posts about Danny not sleeping… Last night he went down at 7:30pm, got up at 8:30pm for an hour and a half, slept from 10:00pm until 11:30pm, was up until 4:30am, and then slept until 6:00am.

Have I said yawn yet?

So, today we will call the doc and see what can be done. He is eleven and starting to be hormonal, and my mom brain thinks it may be possible that the meds are starting to not work like they did before. So, I will ask about weaning off the meds he is on to see if we need to try new ones…

He keeps me on my toes, right?

Last night was exactly what I needed. I just love the Gleeful evenings. Book group is tonight. I am on the fence about attending. I have left Hugh home alone for the last couple of evenings, and he is starting to look wiped (even though I am doing the five hours in the middle of the night by myself). I will make that decision a bit later when I see how the day goes.

Today is take your kid to work day. I am going to pick up Jack this morning when I grab Danny and drive him up to Hugh’s office. Jack is so excited to go to the “family business” today. I wonder what he thinks Hugh does all day? I think he is looking forward to having Dad time for a couple of hours. I will update you later and share how it went.

Hopefully you get a chance to spend time outside in the warm….

It’s a gleeful night…

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I have shared before about a group of us that get together and watch Glee. I thought I would give you the history of how we came to be a sweats wearing, wine swilling, chocolate eating (except for Christina) group of ladies who get together weekly.

A couple of years ago, Vicki and I would get together weekly to watch Grey’s Anatomy. Usually we would get together at her house when her husband was traveling. Last summer, Christina raved about this show Glee she got hooked on last year. So, we watched the first episode together and that was it. Our friend Melinda came over the next week, and the group was formed.

We have random friends have joined in. Now we are a roving group of ladies who meet weekly to watch this silly show.

This is a unique group for this neighborhood. First of all, most of us will arrive in sweats. I usually bring my slippers. Now you get a group of ladies together and there will be drama. It is just the way it is. Most of time the drama is harmless, but it creeps its way into the group.

What makes this particular group special, is after a year we still have no drama. It is almost like we leave it at home with our makeup. We get together and talk about our week.

I don’t know what we are going to do over the summer…but we better think of something. I don’t think I could go three solid months with seeing these ladies weekly….

Doggie and grownup playdate…

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I was lucky enough to spend so time this morning with my dear friend Vicki. She was playing hooky from work today because her oldest child had the day off of school. So, she suggested a doggie playdate in the field behind her house. Don’t tell her, but I considered for half a minute not running over there, I had quite a few things to do while Dan was in school. I am so glad I pushed everything back for half an hour (and at 1:45 this afternoon, everything got done…)

I miss hanging out with her regularly. We still see each other quite a bit, but it isn’t the once a week it used to be. Both of our lives have gotten so busy, that our weekly playdates have fallen by the wayside. Which is too bad, I miss the time.

So, we sat outside, in the cold. We watched her dogs beat up my Mulligan (which he totally needed) and just chatted about things here and there. We didn’t cover anything heavy, we just talked.

I am in such a good place today…. hum… maybe I can get Vicki to quit her day job… It’s a thought…

🙂

It’s not all no sleeping…

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So, when I was picking up Danny this morning, I had a lovely chat with one of the paras and she asked about Katie.

My wonderful twelve-year-old daughter.

It has been a good year for her. I can’t believe I am saying that about Middle School, I remember Middle School…. But, she has really come out of her shell this last year. This same kid, as a toddler, sat on my lap during playgroup for six months (and I really mean six months) before she would play. Middle School has been good for her. She has gained confidence from both times she took Cheer. And, as much as she complained about Drama, she totally needed it.

Hugh and I decided on a different Middle School for Danny. Now, I could probably get Dan’s needs met at the same one Katie attends, because he really only attends school for two hours a day. But we decided not only is Deer Creek better for Dan, but Katie needs a couple of years to find herself without having the responsibility of watching out for her brother. These early teen years are so tough anyway, I would like for her to have some time just for her. And, truthfully, she will have the whole rest of her life to be responsible for her brother one way or another… we owe her this time.

I am proud of her. I can see the strong woman she will become. Now, if we can just get to adulthood without making any life altering mistakes…..

Fingers and toes crossed!

Killing time…

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I am killing a couple of minutes until it is time to get Dan from school. I am sure he will be glad to get home, we have the afternoon to ourselves. I still have a couple of things I need to get done, let’s see if he cooperates…

Our bedroom is all painted and we are just waiting for linens to be delivered… But, the darn mouse has a cookie and realizes how awful my bathroom looks. Hopefully I can do that next month. We need new tile in the shower, a new vanity top, move the light, take down the wall o mirror, and build some functional storage. Add a fresh coat of paint, and that project should take less than a week. So, either I get to it before the kids are home for the summer…or it is a fall project. If you have kids, you realize just how crazy May can be, so it looks like this will happen in October. Well… if I can wait until October….

Re doing the bedroom was just the stress release I needed. So, I can wait. For now.

😉

The money 101…

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I got an email the other day which got me thinking about how the average person has no idea how much money can be spent if you have a catastrophic illness even when you have excellent health insurance.

I have already told you how much we spent of early intervention while waiting on a wait list for a Medicaid waiver. But just in case, we spent $140,000 in two years while waiting for help.

We were lucky(?) enough to have a child who qualified for the Children’s Extensive Support Waiver. This waiver is designed for

“Only children who need a “level of care” that would “normally” be provided in a hospital, nursing home or institution…”

Lucky us, right? Except we are. The CES waiver “pays for” $70,000 of behavioral supports and co-pays for Mr D. So, you would think that would be enough, right? Not so much. Hugh and I also pay another $35,000 out-of-pocket above and beyond what we pay for “raising” our children each and every year for the past seven years. (you can trust that number, it came from my husband and we all know what he does for a living…)

So, just imagine your family’s income reduced by $35k. Just take that right off the top of what you bring home… just under 3,000 a month… Now, when Dan turns 18, we have to figure out how to pay for the rest. He could qualify for adult services. Ok, as long as he never wants to live in another county or state for the rest of his life. That’s not us. We want Danny to have the same access to the world as our other two children. So, we have about seven years to get creative.

So, I am sure you are wondering why I don’t just get a job to help cover expenses…right? Ok, because I have a child who requires “institutional level” support and I can’t just drop him at the local day care.

We are one of the lucky ones, we have been able to pay off the early intervention debt and we are able to maintain our home after paying out-of-pocket expenses.

So, next time you see a very frazzled mom at the store, trying to calm down a kiddo with significant disabilities, not only do they get to deal with the stress the disability causes on their lives…there is probably some “catastrophic” money expenses as well…

Rotten sleep patern…

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Rotten sleep pattern…

Dan is all goofed up! Last night he went to bed at 4:30pm after being up all day. I followed him up at 8pm, I just couldn’t take it any more. Hugh came up sometime between then and 11:40 which was the time Dan wanted to have some fries and lemonade. After six trips up and down the stairs, he finally socked back out at 4:45am.

He is still sleeping right now, but not me. Nope, Hugh took a shower at 5:45 this morning and got ready for work.

So, I am sitting here this morning at 7:45am all by myself. Kate is off to school and the boys are still socked out. I have even put Mulligan outside, because I just can’t take the puppiness right now.

I know we don’t sleep. We haven’t slept since 1997, but I am staring to feel my age. I need for us to catch a break from this sleep pattern for a couple of weeks and allow my poor body a chance to recover. (and drop a few pounds…)

Sigh…