Wednesday, May 18, 2011

Treading Water ...

Sometimes that is exactly how I feel. Just hanging out in some vast body of water, treading away. But hey, at least at this point, my head is above the surface. Can't promise that it will remain that way but for now, I'll take it. So, what has been going on around here? Loaded question on any given day. We are one complicated, busy bunch. Happy but definitely crazy busy and sometimes overworked and sometimes over whelmed and sometimes under appreciated but ... happy. Lets take it from the top,shall we:

Mark,working like a dog.As I type,at 12:18 AM,not home.He seldom if ever,has a moment to claim as his own and is constantly making sure we all have what we need. I know he is burning it at both ends and I know for sure that I seldom acknowledge that. I know that the two of us fall on the bottom of the totem pole but for now,just the way it goes. Maybe more than for now but in our minds, the sacrifices we have made,when we look at our children, have been more than worth it. But, as we approach our 24th wedding anniversary in a few weeks here, I do know we need to etch out a date night here or there. We are so blessed to have such a dedicated husband/ father and I venture to say Mark most definitely falls under the under appreciated category.


As for me: Finally feeling better after 2 months of some nasty respiratory stuff. Couple that with my minor Lupus flare ups and my Meinere's episodes and well, I have been totally run down. So what does one do when they are feeling run down? Train for a marathon. Or two. Yep, Jess and I will be running the Nike Woman's Marathon in October that benefits the Leukemia/Lymphoma Society and as a chaser, her and I, along with Caitlin will join Team Gwendolyn for the Santa Barbara Marathon and raise funds for her foundation that pledges 100 % towards finding a cure for SMA. I think I most definitely fall in the just plain crazy category. But that is hardly new info.


Next up, Jess and Matt. We are so proud of these two. They have worked tirelessly over the last 2 years after graduating from Pepperdine and their hard work has payed off. Matt just passed his written portion of his National Registry test for his paramedic license, as well as passing his day long skills assessment for the Registry too. And, as graduation from Paramedic school looms on the horizon, we can announce, much to his humble dismay, that he is class valedictorian. Awesome, huh? And Jess,just completed her first semester of nursing school and in her own words "It was the hardest thing she has ever done." You wouldn't have been the wiser to that one around here, because like everything else Jess does, she made it look easy. Matt is already back at McCormick Ambulance Company, smack dab in the scary area of Inglewood/Compton and he will begin applying to fire departments as soon as he has his lisence in hand. Jess will work at the VA hospital all summer doing Parkinson's research and, in other news, they soon will be leaving us :( ... not gonna talk about that one,I might just cry.


Now to our precious family of 3: Danny is finding that this last quarter has been quite the killer. Not that he hasn't balanced it beautifully but his degree, in structural engineering, is no walk in the park. Especially living up to his high expectations of himself. But, in true Danny form, he is finding his way through school, work and his commute up on Friday's to see his girls. Speaking of which, Caitlin and Charlotte are doing an amazing job themselves. Caitlin missing having her husband for the company and the help and Charlotte, just plain missing her daddy. But they are nearing the end. Danny will graduate the second week of June, start his paid internship in Burbank the following Monday and come fall, be not only working at the engineering firm but beginning his masters program at USC. They too will be finding a place of their own, but not going to talk about that one, cuz I just might cry some more.


Taylor is back into the swing of living in the States but missing Europe for sure. She appreciates her year there all the more since being home. Feeling so grateful that she had that once in a lifetime experience. She fills her time working 3-4 days a week babysitting for a few families, making really good money and loving all the cute little kiddos. She has also begun "hanging out" with THE most incredible young woman. M.E. happens to sport an extra chromosome and she is, amazing. Really and truly. I think everyone who has a small child with Down syndrome or has just received a prenatal diagnosis, should sit with M.E. And although she is superstar quality, like no other that I have ever met, I have to believe, meeting her would help to alleviate some of the misconceptions and fears that go along with having a child with Down syndrome. I really need to do just a post about M.E because she is just that amazing.


As for Jake and Joe: They continue to go with the flow. It is such a joy to watch them grow and go about their little lives with such energy and enthusiasm. Although the last 4 years has found them having to make compromises and sacrifices of their own, I have no doubt that later, as they become husbands and fathers, the pay off will be seen with great clarity. They both are anxiously awaiting the end of the school year. Counting off the days in fact. They just love the neighborhood we are in and spend hours a day perusing the cul-de-sac with their friends. Jake is still playing the guitar and just this past weekend, Mark bought him and electric one. He is excited beyond belief and it is very cool listening to him jam away upstairs. And when it isn't cool, the amp has a handy dandy head phone jack so he can "enjoy " the sound himself. Joe is also still playing the piano and is thrilled that he will be playing the theme to "Star Wars" as well as "Hedwig's Theme" from Harry potter for his upcoming recital. He is so proud of himself. When not busy outdoors or playing his piano, he is busy surfing ESPN channels. The child is a sports fan like no other. Will watch just about anything. The other day, caught him watching cycling. He is a truly a sports fanatic. These boys make me proud daily and remind me of just why I wanted to start a second set. Just look what we would be have been missing.



And Zoey Grace: Well,she is status quo. Doing her thing. Which is mainly watching this insane household do their thing. Sometimes I believe it is her best therapy. Speaking of which, PT is plugging away. Still believing that one day she will find her footing.


We have to believe that but in the mean time we await for her chair. Which is a story in and of itself that involves incompetence at its best. I better get use to it because I know that throughout Zoey's life we will often be the only ones that care about stuff like wheelchairs. Just the cold, hard reality. Suffice it to say, that for 2 months now, her file has sat, on the desk of the powers that be, the mobility company, and has not moved. Not one bit. Lost. Forgotten. Whatever you want to call it but this momma was SO not happy today. Lord knows when we will see that sucker. Probably not until the end of summer because next stop, our insurance company and we all know just how smoothly and efficiently that will go. School is wrapping up for her and she will have another year in the fantastic preschool where she is and then, I will have to send her to the wolves. Kinda kidding on that. But seriously, I passed by the classrooms where she will go after next year and wow, not feeling it. Unfortunately, from what I am being told, she will not be able to go to the regular, whatever that is, special education class, due to her extensive needs so she instead will go to the county program and honestly, I am just not sure that is what is best for her. Oh well, time will tell and until then, we will just keep moving through our days and hope that in the end, we will find the perfect place for her. In closing, I want to show you this little clip that my friend had on her blog today. Made me cry and as I told her, not sure why but it made me want to meet these moms and these kids. Then maybe, the path to choose for Zoey might be illuminated better for me, because tonight, I just am not sure.

Thanks for hanging with me, that is if you did. See, this is what happens when I am a post slacker. You all pay.


Claudia said...

Hello friend. Congrats to your decision to run the marathon! It will be great. You are in good company, as well ;-) Enjoy the training, it will be hard but you'll love it. I have the Berlin- Marathon on my schedule on Sept 25th so we have the same time channel! Yay yay,we will rock it!!! xx

Cammie Heflin said...

We MUST chat soon, we both need it!

Klein Ward said...

interesting video - got my kids talking, for sure!

Understand the feelings of uncertainty about school - going through these same debates with doctors and myself right now

Shelly Turpin said...

that was me, Shelly, BTW

colleen said...

You make treading water look like you are swimming... great post. I find myself feeling the same way at this end of the country, and as usual all the stuff I was "worried" about came into perspective after reading. The lupus reference was news to me (first of all I am sorry you must suffer with this condition, but second of all your energy is amazing).... to good marathons and continued good health!

Lacey said...

Mark, ever so sweet. And although the money is probably nice, having the hubby home is nicer!
I only hope my children can grow up half as good as your children! My heart sinks every day when I realize how old I am and that me and my hubby never got an education beyond high school. We are definitely paying for it now, and I blame both our parents for making us feel like it was impossible! This is impossible!
My boys understand the importance of an education. I can't wait to get out there so I can get me some Camarillo strawberries!!

Rochelle said...

LOVE the update on everybody. WOWIE a marathon could you come and drag my lazy self out to train with you? So excited for all the fantastic news for your family. Sorry that everyone can't stay close to home.

Reagan Leigh said...

Thanks for the update...I love hearing how everyone is doing! I never get this much info out of you over the phone. Now I feel like I am caught up! I also can't believe you never told me you were training for TWO marathons!!! You are amazing! Crazy, but amazing!! How I wish I could be there to cheer you on as you cross the finish line! We'll get there! Someday we will get there!!!

Anonymous said...

Well I had written a comment(long) and must have hit the wrong button and "poof" it disappeared. Maybe, it was a message that Bluebelle you were too wordy! So....this will be much shorter - Kudos to EVERYONE - love, love all these photos and the great update Heather.
But just one observation: posting at 1:52 am, Mark still working and not home at 12:18 am? - wow you two... I think you two deserve a Heather & Mark date!

love & hugs
Aunt Bluebelle

Anonymous said...

Beautiful pictures of your "whole" family. What a tribute to two great parents. I can't imagine dealing with all you do and still willing/wanting to do a marathon. Best of luck to everyone.

Agree with Bluebelle, a much needed Mark and Heather night should be on the agenda.

Ginny, Bluebelle's friend

b said...

Hi Heather,
Someday I have to meet you! So often I read your blog and wish I could call you up so we could chat about "stuff". But for now, love the trailer. Have you ever seen "Autism is a world" by Sue Rubin? or "I'm Tyler"? Or heard Norman Kunc speak? or watched Amanda Baggs videos (On Being Retarded is my fav). These are all people who most would have given up on, but when given a chance they are absolutely breathtaking. Don't ever settle. There are laws against school districts telling you that Zoey can't have access to the least restrictive environment because of her health. Don't let them get away with that. She is fully included in your crazy house, and can be fully included in school, too. And the whole class, and the teacher, would be better for knowing her.

Melissa said...

You have an amazing family and I love hearing everyone's updates! Wow, on the marathon training! Good luck with that! I hope you get things worked out with Zoey's chair soon. :(

Denise said...

You know we are both busy when I have to read your blog to catch up on things. I think it has been at least a week since we have talked :( Every time I read about your big girls, I am just amazed at what beautiful and successful girls you and Mark have raised. They have accomplished to much already and all seem to be driven in what they do. I am sure it will be hard to see some of them leave again but we all know that life must keep moving forward. I have no doubt that your boys will follow along that same path of successful independence!! And sweet Zoey...who knows where her path will lead but one thing I know for sure, wherever it leads, she will be the biggest, shining star there. I have no doubt that she will continue to surprise us all with what she can do. You have a whole year until you need to worry about what comes after preschool so don't stress about it yet. You will find the perfect place for her to learn!!

The Annessa Family said...

When my brother was botn 37 years ago no one knew WHAT to expect. Just day by day...and I can tell's NOTHING that my family ever expected, but it's all been so much better. He is our blessing, our bond...he is just amazing. As is your little Zoey :)

Brooke Annessa

Becca said...

Wow, you have one craazy buusy life, Heather. And somehow you seem to manage it all so incredibly gracefully! I'm super impressed (and jealous!)that you're training for a marathon, too!

I always marvel at how beautiful and well-rounded your family is. :-)

Anna said...

Heather dear, so good to see words and pictures. About the anniversary, you MUST celebrate! This milestone cannot pass by without MUCH CELEBRATION! The wheelchair, do you have an e-mail for the person sitting at the desk where the file gathers dust? Tell them you forgot to attach something to the paperwork and Find photos of your Zoey Grace to e-mail.;) The process needs a real face I do believe. I knew about your headaches but not the Lupus. Sigh. You seem to be doing incredible in spite of it all. Remember Nemo, "just keep swimming." my friend.

Karol said...

A wonderfully normal busy life. That's beautiful. As for Zoey and school, that's a subject I'm very well versed in. Don't let anyone tell you her needs are too extensive. Here's a phrase you need to get very cozy with, as it will be your greatest ammunition---"least restrictive environment." Could write a book on the topic.

Laura said...

It's interesting (and somewhat dissapointing) looking at different educational programs. Here in Edmonton, Canada, Zoey would have the option to be integrated in a regular classroom with a nurse or aide until junior high or high school because she does not have severe sensory or behavior problems that would prohibit her being in a typical classroom environment. Also, what stream of special education a child is placed into is based on cognitive and behavioral characteristics rather than how complex their physical needs are. Zoey is more cognitively advanced than the majority of children and adolesents I work with(I work with children with autism). I hope the county program they are suggesting has the right resources to deal with children who do not have severe/profound cognitive difficulties. I know from working with such children that their needs are very differnt than a child like Zoey who has relatively good use of signs and gestures (e.g. learning to operate a simple cause and effect item versus learning basic conversation skills).

Elizabeth said...

Wow. There was so much to read here and I lapped it up! All the photos were wonderful and I'm just incredulous that you're running a marathon. I don't even know what to think! :)

That video? I spoke with the film-maker and they're having the screening here in LA on June 4th. You'll have to come up and go with me. I'm going to help promote it.

Scrappy quilter said...

Dear friend, it's so good to read he update, to see the changes in the kids (both adult and little) and to see all your family is doing. Two word I can't imagine that. Sending you good thoughts on that. As to school, I'll be praying the perfect situation will come along for your little princess. I can hardly believe she will soon be in school...where has the time gone.

hugs and love

Angi said...

Thanks for the update!! I was missing your awesome family!!!!

blogzilly said...

Might be best to break this one down:

1. The family portrait rocked out with you and all the daughters. There's something very, I dunno...fulfilling about that picture to me.

2. Being sick for 2 months sucks, doesn't it?

3. LUPUS? I didn't know that. JE...oh wait, sorry.

4. The term 'treading water' is amazingly ironic. It is the exact term I was using to describe how I feel to a friend about my life in general.

5. What the hell is it about wheelchair companies? Why do I only hear negative stories about them? I have yet to hear anybody say anything positive about any of them.

6. The angst about 'choice' for Zoey is familiar. I often wonder where Bennett 'belongs' when I see him develop at such a snail's pace, if at all. Is he at the right place? Have I made the right 'choice'? It's never easy. I feel that pain with you.

7. 24 years. WOW. I haven't hit ten yet, and I look over sometimes and wonder how we'll make it through all of this. The chasm is vast sometimes, this world we are in now is so divisive. It will take a lot more effort than I ever realized. A lot more.

Loved the post...

Mama Mason-Mann said...

Wow. That clip at the end was powerful. I'm always amazed by how you manage all that you have going on. You inspire me. Thank you for taking the time to write and update us. I always appreciate it. And I'm also always so impressed with what a beautiful family you have. I'm sure you must be so proud!!!!

Googsmom said...

You are awesome!

Bethany said...

Way to go with the marathons!! What an amazing family you have, and a testimony to the values you instilled in them and the wings they grew to follow their passions. I think it is an unwritten rule that wheelchair vendors must find every single way to be incompetent. I ran in to the exact same problem when I ordered Nessarose (yes, I named my wheelchair). The company only gave me a loaner chair that was better than the hospital chair when I threatened to go to the media. My chair now needs some fixes and I am tempted to do them myself rather than deal with the company. Next wheelchair I plan on researching and picking a different vendor. As for the best place for Zoey, never forget the power you have as a parent. Follow your heart, it has never led you astray for the amazing miracle and it won't now. If you have IEP, testing, or placement questions that I can answer as a former teacher please never hesitate to ask. Zoey has a lot to teach us if we take the time to learn, and that includes her teachers.

ABandCsMom said...

I must say, after meeting you and now, after reading your description of your family on this blog post, I am sooo NOT surprised at the awesomeness of all your kids. As blessed as you are with your brood...they are equally as blessed to have you, as their mother.

Give Zoey some {{{{hugs}}}} from Paul and I. Someday, we will see you both again. :)