You Gotta Know When to Hold ‘em

Shannon posted today at BlogHer talking about the dissolution of the dynamic “Green the Vaccine” duo Jim Carrey and Jenny McCarthy. I am totally with Shannon, that while I am not on board with most anything Jenny McCarthy and her movement spout, I have no desire for any ill-will to befall either of them, (or really any person who is anti-vaccine, or really anyone for that matter). 

Shan’s focus was more on the myth surrounding the divorce rate in families with special needs children; some say it is as high as 80%. Mull that one over eh?

She interviewed me for the post, and used an excerpt of my response to her query:


1) Are your child’s special needs a factor in the state of your marriage?

2) for better or for worse?

and my answer is…

****

Yes, and while I feel that children change the direction of any marriage, having a special needs child changes the direction of everything in your life, and often.

I feel lucky because I got to figure out really early on that I married the right man, and that I want this marriage to last my lifetime. We have learned how to be a team, how to give each other space, how to argue while still taking care of some pretty big or stinky jobs.

I do think marriage is harder when you have a special needs kid. Just finding a babysitter to go to therapy can feel insurmountable, and where is the money for date night supposed to come from when all of your dollars seem to be going towards therapy or special shoes, or another stroller that’s even bigger because your kid still can’t walk? Everything is just a little bit harder, fixing dinner, bath time, childcare, hours you keep at the office versus home; having a special needs kid impacts the choices you make in every category of your life, it’s not like “marriage” could really stand outside of that.

And all of these marriages with typical kids that end in divorce? Sometimes I get angry… sort of like “wait a minute you have everything going for you there: health, and typical kids, and no short bus, no 2+ hour IEPs and no wondering whether you are going to drive off the road because you’re so tired because your kid has epic migraines and hasn’t slept in days.” I think, “Why is it that we are making this work, and you can’t with your simple, easy, carefree life?” And I know that’s not completely fair, because every relationship has its moments, it just seems we have a lot of things working against us, and we are still here, together.

So it occurs to me that maybe that’s why we’re still here, or at least part of the reason, aside from really having liked each other to begin with. Maybe having a special needs kid has cemented our relationship, in ways that only despair, coupled with a deep abiding love for our child, could possibly do.

We have learned how to move through adversity, together, and we share the same dark, dark, humor, and we have remembered to laugh. We have figured out, on our worst days, how to still be good roommates, because we have children to raise, and an example to set for them.

I don’t necessarily recommend adding a special needs child to a marriage to strengthen it, I’m not thinking it works that way, but for me, for us, we’re going to be just fine; place your bets.

Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

• more verbalization
• more silliness
• less able to sit in class
• more clearly visible by his reactions that he is “there” because he is making sounds and laughing appropriately at funny things
• I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.

Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:

• Lots of great memories for kiddos and grownups
• Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
• Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
• Nagging feeling that I am behind

I have finally done all of the laundry:

• can’t find any time to fold it unless I am awake at 2am
• can’t find anything because it is in a gajillion baskets all over my bedroom
• brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry… is still magically not going to be folded and put away.
• constant feeling that I am behind

Date night with Descartes on Thursdays:

• happy husband and wife who actually talked…to each other.. throughout an entire dinner about more than just who needs to go potty.
• less cash
• less time to do crappy laundry (see above)

Can I Sit With You? book number two being published this fall:

• whooo hoooo excitement and thrill of accomplishing something meaningful
• constant feeling that I am behind

Lucy is most precious bright star:

• no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
• I am worn out by 10 am each day
• have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
• breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities. 

Finally took care of myself and went to the doctor for shoulder pain:

• not only do I have a rotator cuff injury, but something is f’d up in my elbow as well.
• need to go to physical therapy 2-3 times a week for at least a month
• personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
• guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.

I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

• more verbalization
• more silliness
• less able to sit in class
• more clearly visible by his reactions that he is “there” because he is making sounds and laughing appropriately at funny things
• I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.

Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:

• Lots of great memories for kiddos and grownups
• Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
• Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
• Nagging feeling that I am behind

I have finally done all of the laundry:

• can’t find any time to fold it unless I am awake at 2am
• can’t find anything because it is in a gajillion baskets all over my bedroom
• brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry… is still magically not going to be folded and put away.
• constant feeling that I am behind

Date night with Descartes on Thursdays:

• happy husband and wife who actually talked…to each other.. throughout an entire dinner about more than just who needs to go potty.
• less cash
• less time to do crappy laundry (see above)

Can I Sit With You? book number two being published this fall:

• whooo hoooo excitement and thrill of accomplishing something meaningful
• constant feeling that I am behind

Lucy is most precious bright star:

• no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
• I am worn out by 10 am each day
• have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
• breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities. 

Finally took care of myself and went to the doctor for shoulder pain:

• not only do I have a rotator cuff injury, but something is f’d up in my elbow as well.
• need to go to physical therapy 2-3 times a week for at least a month
• personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
• guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.

I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

Back to School…and work

We had a great weekend post vacation-Jake camp-Lucy sleepover week. It was nice to just be us, at home. We did have Sage and her wonderful family over on Saturday night. They are such an easy crew with whom to pass the time. I love that her seemingly quiet husband has become the joking conversationalist as he has come to know us, and that their daughter is now a little chatterbox where she once looked wide-eyed and a little afraid of us. We are not a quiet family with a quiet life. Even on a sleepy day we still have Jake and his unpredictability and Lucy and her wackiness, and me with my drama and need to please and entertain, and two gigantic golden retrievers, and my dear Descartes who by sheer height can worry some people (it’s a good thing he has a baby face…).

It’s been a good thing to have people over more often. We will figure it out. Now that the backyard has usable space I don’t feel like there is nowhere to go. I know we always have enough food and drink, but I worry about trying to crowd people into too small a space…especially people with kids who need a lot of space, or distance from my special kid. If I can just get a grip on the clothing mountains and the paper foothills variously piled throughout closets and corners I’m sure the place will feel bigger. I saw a shed at Costco last night and contemplated putting it in the side yard and calling it my office. (Don’t worry mom…I’m kidding)

Driving around the state with Descartes I realize by all of his comments, how happy he would be, how happy each of us would be, if we had a little bit of fenced-in land that was not so close to neighbors. Jake was always so, so happy in Montana, and of course Descartes loves to build things. If my property in north-eastern California were closer, I’m sure we would have a small cabin by now. It would be nice to have it while the kids were little and still wanted to hang out with us, but I am hoping that within ten years we will be able to buy just a few acres…somewhere.. fence it in, make it safe for Jake and be able to relax while Jake plays in the woods (his favorite thing in the world to do). We’ve talked about buying a place near here in the Santa Cruz mountains. Something close by we could use every weekend if we wanted. I keep checking the ads… one day we will find the perfect place.

Jake went back to school this morning and Descartes went back to work. They both put on cheerful faces before they left the house, but I know that neither one of them enjoyed getting up this morning. Lucy and I have already had breakfast and played the www.pbskids.org Caillou games. I do not understand her obsession with this whiny, balding, four year old kid, but the television family seems decent enough and he gets busted when he’s mean to his sibling, so the lessons aren’t bad at all. I need to get Lucy her own computer. Something sturdy she and Jake can use. Jake has always loved computer at school, and with more help and practice it could be a very useful tool for him… and Lucy wants to “move da mouse squeak squeak” and “Click now? Click now? Now mommy?” So I am thinking she’s ready too.

Lucy meets her new day care provider this afternoon, but first she must go to her 2 year old appointment. Will there be shots? Hmm must remember to bring lollipops.

Back to School…and work

We had a great weekend post vacation-Jake camp-Lucy sleepover week. It was nice to just be us, at home. We did have Sage and her wonderful family over on Saturday night. They are such an easy crew with whom to pass the time. I love that her seemingly quiet husband has become the joking conversationalist as he has come to know us, and that their daughter is now a little chatterbox where she once looked wide-eyed and a little afraid of us. We are not a quiet family with a quiet life. Even on a sleepy day we still have Jake and his unpredictability and Lucy and her wackiness, and me with my drama and need to please and entertain, and two gigantic golden retrievers, and my dear Descartes who by sheer height can worry some people (it’s a good thing he has a baby face…).

It’s been a good thing to have people over more often. We will figure it out. Now that the backyard has usable space I don’t feel like there is nowhere to go. I know we always have enough food and drink, but I worry about trying to crowd people into too small a space…especially people with kids who need a lot of space, or distance from my special kid. If I can just get a grip on the clothing mountains and the paper foothills variously piled throughout closets and corners I’m sure the place will feel bigger. I saw a shed at Costco last night and contemplated putting it in the side yard and calling it my office. (Don’t worry mom…I’m kidding)

Driving around the state with Descartes I realize by all of his comments, how happy he would be, how happy each of us would be, if we had a little bit of fenced-in land that was not so close to neighbors. Jake was always so, so happy in Montana, and of course Descartes loves to build things. If my property in north-eastern California were closer, I’m sure we would have a small cabin by now. It would be nice to have it while the kids were little and still wanted to hang out with us, but I am hoping that within ten years we will be able to buy just a few acres…somewhere.. fence it in, make it safe for Jake and be able to relax while Jake plays in the woods (his favorite thing in the world to do). We’ve talked about buying a place near here in the Santa Cruz mountains. Something close by we could use every weekend if we wanted. I keep checking the ads… one day we will find the perfect place.

Jake went back to school this morning and Descartes went back to work. They both put on cheerful faces before they left the house, but I know that neither one of them enjoyed getting up this morning. Lucy and I have already had breakfast and played the www.pbskids.org Caillou games. I do not understand her obsession with this whiny, balding, four year old kid, but the television family seems decent enough and he gets busted when he’s mean to his sibling, so the lessons aren’t bad at all. I need to get Lucy her own computer. Something sturdy she and Jake can use. Jake has always loved computer at school, and with more help and practice it could be a very useful tool for him… and Lucy wants to “move da mouse squeak squeak” and “Click now? Click now? Now mommy?” So I am thinking she’s ready too.

Lucy meets her new day care provider this afternoon, but first she must go to her 2 year old appointment. Will there be shots? Hmm must remember to bring lollipops.

Anniversary Trip Day Two: Yosemite

Monday morning. Descartes is clearly on vacation because he cannot sleep in. He dosed me with cold medicine last night so I’m groggy as all get out which we decide is pretty funny since it appears this may be about the only way to get me to be quiet. I do not fully wake up for hours…I sleep with my eyes open through breakfast and the drive into the park.
We pack it up and head back to downtown Groveland to drop off our room key and eat the free breakfast. Back in Yosemite National Park we park our car and unload bikes. It is a beautiful day. I’m nut sure where all those people are from last night, but they aren’t here now.

Riding bikes on the valley floor is fairly easy, but we do find one small (still paved) trail to huff and puff up for a very short while. We end up at Mirror Lake, where we lock up and do a little trail walking. In spite of the wildfire smoke, it is beautiful as well. I keep saying, “Wow I feel lucky today.”

We decide we should have lunch at the Ahwahnee Hotel. It is an old skool place. If you have never seen it, I put it in the same category as the Claremont in Berkeley and the Royal Hawaiian on Waikiki Beach. We sat on the patio of the Ahwahnee Bar and were pleasantly surprised by how good the food was, having heard not so many raving reviews. The cheese plate was really high-end, with pistachios, dried cherries and a very yummy goat cheese being my favorites of the selection. I drink a sidecar, because I figure we are in the perfect place to have one, and I miss my friend Squid who loves them. It was perfect. Little munchkin chikarees race around our feet as we eat and I am thinking this is possibly the best day I have had in a long time.

We call it a day for the valley floor, pack up our bikes and head out of YNP toward Tuolumne Meadows and on to Mono Lake. Mono Lake is interesting, but as far as I can tell, I actually don’t need to go there again.

Total miles driven on the trip so far 519

We make a left on 395, marvel at the crazy amount of smoke from the wildfires and drive straight through to…RENO.

Seriously? Yes. We stayed at John Asquaga’s Nugget. More for a joke than anything else. We went here a long time ago with very good friends and had a terrific time. This time we get upgraded at the desk, and stayed in a very nice redecorated room that had a freeway running right outside the window. We dined at Trader Dick’s and for nostalgia’s sake we had a Scorpion bowl.

Between the two of us lost a total of $39.00 and managed to play video poker and some roulette for hours.. so I am thinking we got our money’s worth.

In the morning, the smoke outside from the wildfires is so think it seems that Reno is on fire. Poor Nevada..bad enough to live in Reno, but they have all of this horrible smoke from California and no ocean breeze to knock it away any time soon. It’s just sitting there hanging. A satellite image from MODIS. We learn on the news that there are over 800 wildfires buring in California. We decide that we will head west. It is 81 degrees at 8:30am. Ugh.

Anniversary Trip Day Two: Yosemite

Monday morning. Descartes is clearly on vacation because he cannot sleep in. He dosed me with cold medicine last night so I’m groggy as all get out which we decide is pretty funny since it appears this may be about the only way to get me to be quiet. I do not fully wake up for hours…I sleep with my eyes open through breakfast and the drive into the park.
We pack it up and head back to downtown Groveland to drop off our room key and eat the free breakfast. Back in Yosemite National Park we park our car and unload bikes. It is a beautiful day. I’m nut sure where all those people are from last night, but they aren’t here now.

Riding bikes on the valley floor is fairly easy, but we do find one small (still paved) trail to huff and puff up for a very short while. We end up at Mirror Lake, where we lock up and do a little trail walking. In spite of the wildfire smoke, it is beautiful as well. I keep saying, “Wow I feel lucky today.”

We decide we should have lunch at the Ahwahnee Hotel. It is an old skool place. If you have never seen it, I put it in the same category as the Claremont in Berkeley and the Royal Hawaiian on Waikiki Beach. We sat on the patio of the Ahwahnee Bar and were pleasantly surprised by how good the food was, having heard not so many raving reviews. The cheese plate was really high-end, with pistachios, dried cherries and a very yummy goat cheese being my favorites of the selection. I drink a sidecar, because I figure we are in the perfect place to have one, and I miss my friend Squid who loves them. It was perfect. Little munchkin chikarees race around our feet as we eat and I am thinking this is possibly the best day I have had in a long time.

We call it a day for the valley floor, pack up our bikes and head out of YNP toward Tuolumne Meadows and on to Mono Lake. Mono Lake is interesting, but as far as I can tell, I actually don’t need to go there again.

Total miles driven on the trip so far 519

We make a left on 395, marvel at the crazy amount of smoke from the wildfires and drive straight through to…RENO.

Seriously? Yes. We stayed at John Asquaga’s Nugget. More for a joke than anything else. We went here a long time ago with very good friends and had a terrific time. This time we get upgraded at the desk, and stayed in a very nice redecorated room that had a freeway running right outside the window. We dined at Trader Dick’s and for nostalgia’s sake we had a Scorpion bowl.

Between the two of us lost a total of $39.00 and managed to play video poker and some roulette for hours.. so I am thinking we got our money’s worth.

In the morning, the smoke outside from the wildfires is so think it seems that Reno is on fire. Poor Nevada..bad enough to live in Reno, but they have all of this horrible smoke from California and no ocean breeze to knock it away any time soon. It’s just sitting there hanging. A satellite image from MODIS. We learn on the news that there are over 800 wildfires buring in California. We decide that we will head west. It is 81 degrees at 8:30am. Ugh.

I am always

…amazed by the kindness of others towards my special needs child:

• I know amazing women who helped make something wonderful happen.. an inclusive art project. We had the “art opening” at the Main Library here in Deadwood City. This is the art that was made possible by the grant applied for by DoubleTrouble and executed by Mamalicia, then turned into beautiful cards by Captain Blog. To order your set of cards visit our website and send an email to septarinfo@gmail.com
• the buddy Jake did his art project with came to the opening with his momma. He is the same boy who went on a date with us on Thursday. I must say again that he is one of the kindest little boys I have ever met. While he was at the library he made Jake a card that said “I had a great time at Johnny Rockets. I am having a great time at the library today too. I really like being your buddy.” He drew pictures of a fish and several other creatures. He thanked me for inviting him to the art show. It was more than heart warming.

…surprised by death, even when we know it is coming, for all of us eventually:

• my girlfriend Pinks lost her momma this week after a very long battle with cancer. It was hard for me not to go be with her, even though it was not expected, and cost prohibitive, and would have been extremely hard on Descartes to juggle both children and work.
• I have an acquaintance, someone I met through close friends who has just entered the hospital for hospice. She is dying. She’s only 38. I won’t pretend that we are close friends, but I have laughed more than a few times with her, and care very much about Lovey who is her best friend. It will be so hard on Lovey and there is just not much we can do to make it easier for either of them. She is dying, and we knew it was going to come. We have known for awhile, but it is just so hard to imagine that the girl who danced on the bar with me, at Tao, in Vegas…is the same girl who is trying to get pain relief in her final days.
• I do not, at all, fear my own death. Not in any way, except to be pained that I will not be able to care for Jake, and who else will possibly care for him if I am not here. I am reminded that I need to get our ducks in a row to make sure that Jake and Lucy will be cared for in case I am surprised by my own demise.

…perplexed that I cannot make simple foods, but have mastered the most complex of recipes:

• I cannot make pancakes from a mix. I suck SUCK at making pancakes. I need to look up how to hard boil an egg, and I have failed at Jello every single time I have ever made it. Who fails at Jello?
• I can make an angel food cake from scratch, a soufflé which defies gravity and a chocolate cheesecake that was good enough to garner $200 at an auction.

…delighted when watching my husband plan an adventure:

• we are planning our ten-year anniversary mini-vacation, and have just, in our typical fashion decided that we should go while Jake is at camp at the end of June!
• we have decided to stay on the west coast of this continent and that is as far as we have gotten. Exceptions may be made for Jamaica, Banff, and Montana.
• we have recently excluded Panama due to the high incidence of armed robberies and kidnapping. We do not currently have time to be kidnapped.
• high on the list: Ten-ee-ah Lodge,
  

The Royal in Cancun (technically not on the Pacific Coast, I know.)

…disappointed that I cannot complete simple household projects:

• our downstairs bathroom has been “undone” for a year. It is only half drywalled and has the new toilet installed. We have also managed to place the shower stall floor pan. We have purchased the tile and the grout, and the glass for the shower but just can’t seem to get it together to finish the damn thing.
• we have new lights, purchased in December, for the hallways up and down and Jake’s bedroom which currently has the old overhead light with no glass in it. It broke last December which is why I bought the lights in the first place. I am hoping that eventually he will not have to stare at bare bulbs.

…thankful that this is my life, exactly as it is:

• i have the most precious children, the smartest husband and the coziest home. I am a lucky woman.

Waterworks

• The LandCruiser will cost $2500 to repair, and that’s just if we fix the catalytic converters…not even trying to fix the tail light or the one bad tire (note: please make sure your tires are properly inflated. You really can ruin your tires by not making sure they are all four inflated properly…especially if you don’t rotate them!)
• Lucy refused to nap today
• The stylus for my Superphone flew out in my kitchen, landed on the floor and has disappeared.
• Jake woke up with a dry diaper again today (at 6am) and when I tried to race him upstairs (because the downstairs bathroom still isn’t done) he went willingly.. then when Lucy followed us and barged in he got mad and refused to go on the toilet.
• I was all excited to go out of town in April with my husband and just figured out that it is NOT the weekend Jake goes to camp, which would therefore make it too difficult for his grandparents to take care of him (and Lucy) for the entire weekend.. so no chance of Descartes and I ever getting away together by ourselves…ever again? for the rest of our lives?
• I am hot. While I love the idea of springtime coming.. bulbs pushing through the dirt, I am not ready for the weather change.Sweater no sweater? long socks short socks? sunblock!
• Lucy did not nap today.
• My Internet connection was down nearly all day.

Are these things that would make others cry? I sobbed on Lucy’s bed (she was playing upstairs…not napping…)

then of course I got it together and fixed the Internet connection and paid all of the bills and found some short socks.

Waterworks

• The LandCruiser will cost $2500 to repair, and that’s just if we fix the catalytic converters…not even trying to fix the tail light or the one bad tire (note: please make sure your tires are properly inflated. You really can ruin your tires by not making sure they are all four inflated properly…especially if you don’t rotate them!)
• Lucy refused to nap today
• The stylus for my Superphone flew out in my kitchen, landed on the floor and has disappeared.
• Jake woke up with a dry diaper again today (at 6am) and when I tried to race him upstairs (because the downstairs bathroom still isn’t done) he went willingly.. then when Lucy followed us and barged in he got mad and refused to go on the toilet.
• I was all excited to go out of town in April with my husband and just figured out that it is NOT the weekend Jake goes to camp, which would therefore make it too difficult for his grandparents to take care of him (and Lucy) for the entire weekend.. so no chance of Descartes and I ever getting away together by ourselves…ever again? for the rest of our lives?
• I am hot. While I love the idea of springtime coming.. bulbs pushing through the dirt, I am not ready for the weather change.Sweater no sweater? long socks short socks? sunblock!
• Lucy did not nap today.
• My Internet connection was down nearly all day.

Are these things that would make others cry? I sobbed on Lucy’s bed (she was playing upstairs…not napping…)

then of course I got it together and fixed the Internet connection and paid all of the bills and found some short socks.