Creating The Year 2010
Every year, especially around the time of my wedding anniversary, I hear comments about how X percentage of couples that have one child with a disability, get divorced. And how Aaron and I have truly beaten the odds by having a marriage survive this long with both of our children having disabilities.
I don’t care much for statistics- I’ve shared before that one in one thousand children are born profoundly deaf AND one in one thousand children are born with Spina bifida. Aaron and I got one of each… go figure. I am no expert in statistics, but from what I hear the likelihood of getting two – one in one thousands is actually- one in a million. There’s something about that that makes me smile. (Dear stat experts, if it’s not true, don’t burst my bubble… just keep it to yourselves)
I do like to think we have somehow beaten the odds. But, I don’t want to lead you astray either. See, it has not always been pink and rosy. No actually there were years… YEARS and YEARS where when we were asked how we manage it all, the answer was this, “Well, neither one of us wants to do this alone.” (Not super inspiring is it?) Even three years ago, if you had asked how Aaron and I “keep it all together” I would have told you, “Neither one of us wants to do this alone.”
A few years ago, I was sitting outside with Lucy on my lap. It was night and I was pointing out the three constellations that I actually know. As we sat under the stars, Aaron’s shadow was cast along the wall as he walked through our house. “I love that man.” I said.
Lucy quickly responded, “Well you sure don’t act like it.”
I was stunned. My first thought was to start listing all the ways Lucy was entirely wrong. But then I realized, maybe I could learn something here. I mean, Lucy lives with us and I was curious to know what her experience was.
I took a few breaths, then I tried to act a little disinterested, still looking at the stars above, “You think so Lucy?” I said, “Tell me about that.”
“Well. You never hug or kiss him and you never say ‘I love you’ to daddy.”
(Ouch! No, really- OUCH! She was right! That was bad news right there!)
“Hmm. You know what Lu? You’re right. Those are things I am going to work on. Thanks for helping me see that.” (But, still… ouch!)
We came inside the house. Aaron was doing dishes. I put Lucy in her chair at the kitchen table and walked up to Aaron, put my arms around his waist and said, “Hey, I love you.” (Was that surprise I saw in his face? Worse yet, was he shocked?)
“What did I do to deserve that?” He asked… (Oh great, he’s actually suspicious of me!)
And before I could come up with an answer a little voice from the table said, “Good job, mom! That was much better!”
I started thinking about what happened over the previous ten years. What happened? How did I go from falling madly in love with this guy, to having a fairly casual relationship based on a division of responsibilities?
You do the wash. I’ll put it away.
You do the dishes. I’ll cook.
You’re in charge of soccer. I’m in charge of art class.
Our marriage was not about loving each other or even enjoying each other’s company. Nope. For a very, very long time, our marriage was about survival. It was easier to deal with the day to day together than it would be alone. We had our kids and we both loved them very much.
Since I am not raising typical kids, I cannot speak to how it is for those of you who are. What I know is this, once we discovered Leah’s deafness, and then Lucy’s disabilities followed, well, it seemed that Aaron and I were engulfed in a spin-cycle of drama and survival.
With Leah it was assessing and doing our best to assure her “survival” in the education system. Contributing all we could to ensure that she would come out on top, or at least ahead of the very low expectations set for deaf children. See, we had been told to expect her to graduate from high school with a 3rd grade reading level. (Not on my watch!)
And with Lucy, “survival” was quite literal. Starting with our 18-week ultrasound, we did not know if Lucy would survive the pregnancy. Would the hydrocephalus (water on the brain) impede her brain’s growth too much? Then we had fetal surgery at 22 weeks. If Lucy had accidentally been born during the procedure we would have to make THE decision. And then post-op, she was (incorrectly) diagnosed with holoprocencephaly AKA Cyclops disorder. They told us her brain was missing the corpus callosum. We were told that she would not likely survive her birth.
But she did.
And then Lucy was diagnosed with cerebral palsy at nine months. And around that time there was a night where she seemed very lethargic and unresponsive. I rushed her to the ER in the middle of the night and the doctor told us if I had waited until morning, we would have lost her. Her entire system was septic. Her body was poisoning itself.
After that, month after month she had life threatening infections that would require daily shots of antibiotics in her thighs, one shot a day for 10-14 days in a row. I would pull into the hospital parking lot and she would begin whimpering. She wasn’t even a year old.
Aaron and I were ever watchful. We became experts in things no parent imagines. On the frequent ER visits, I would rattle off her medications, past procedures, daily procedures, hospital stays, surgeries and all of her doctor’s names. The nurses and doctors would ask, “Are you a nurse?”
“No” I answered, “I’m a mom.”
“We know you’re her mother, but are you also a nurse?”
“No,” I answered impatiently, “I am not a nurse. I am just a mom.”
But operating at such a high stress level changed the relationship of the “grown-ups” in the house. We were always focused on the girls. Always.
We didn’t even realize it.
If I had been aware of it, I don’t think I would have done anything differently. Would I sacrifice my marriage for my children’s well-being? Seems an odd question, since you could argue that a divorce would also affect their well-being. But, I already know the answer because for years we did just that.
And then one of the little girls I was so focused on, turned the tables and showed me that she was focused on her parents. She had been watching us. Her words, “Well, you sure don’t act like it” stung, but they only stung because I knew that Lucy was right.
We had allowed ourselves to fall into a default relationship in a default life. We were just reacting to the things going on. We were not choosing and creating what we wanted!
That year we sat down and as we planned out our year, we decided it would be: The Year of No More Somedays
And it was! We knocked off our biggest “someday purchase” and bought our pop-up camper, a camper we had talked about buying for 10 years, and we immediately started camping in it.
That year we also shot 13 new Signing Time shows and brought Signing Time to public television.
The next year, we sat down and created: The Year of Fun & Adventure
We went to Ghana, Africa.
I was nominated for an Emmy.
We went to Cancun and had the “strong enough” moment that would change all of our lives.
The next year, (last year), we sat down together and decided it would be: The Year of Health & Fitness
Need I say more? There was SCUBA, Aruba, Disneyland, and Yellowstone, plus two half-marathons!
We haven’t created 2010 yet, but I have some good ideas.
The Year of Yes
The Year of Disappearing Debt
The Year of New Heights & New Experiences
The Year of Miracles & Dreams Coming True
I encourage you to create 2010 for yourself, especially if you’ve never created a year and then lived into it. Create your theme with your family and loved ones. You don’t have to know what you are going to do to fulfill on the theme you pick, just pick a theme that makes you smile. Make up a theme that’s worth getting out of bed for each morning, and then, throughout the year you will start seeing opportunities to fulfill on your theme. I’ll let you know which theme we choose and I’d love to hear about yours!
P.S. Feel free to steal other peoples themes (or any of mine) if you see one that speaks to you.
Tags: creating your year, default life, default relationships, disabilities and marriage
January 25th, 2010 at 1:48 pm
Rachel,
Your honesty is something to be admired. Thank you for sharing your last post. One that I feel we all needed to hear. We feel like we know you in our house as we have been loving the Baby Signing Time collection since our little girl turned 1 year old. We are just now 2 and enjoying some of your other Signing Time videos. Her favorite at the moment is the ABC video…as she sings and signs her ABCs all day…we are having so much fun. Thank you for giving us all this wonderful tool to learn to sign. We literally sing your Baby Signing Time songs ALL day…in the car, as we play, as we eat. Between Baby Signing Time songs and our Bible songs…we sing all day. Thank you so much!
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January 25th, 2010 at 1:56 pm
Rachel:
You and your family are truly the “gift that keeps on giving”. Not only have you given us the invaluable gift of Signing Time (and all the benefits to children and parents alike that accrue from it), but by opening a window into your real life and the challenges that you and your family face, you give aid and comfort to the rest of us who may be raising special needs children by:
1) Reminding us that we are not alone (situationally)
2) Giving us that “wakeup call” that while we need to focus on our children, for the family’s sake, we need to focus on our spouses as well.
…and yes, you’ve done it again…. Would someone please pass me a Kleenex?
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January 25th, 2010 at 2:02 pm
As someone (wife and I) who is knee deep in the “just trying to keep it all together everyday”, I am not sure how to comment to this. Part of me says, this gives me hope; another part of me says that our situation is so different from yours. I guess that moment with Lucy was her way of telling you, “mom, I am ok now, time to get on with your life with dad.” That is the day all of us special needs kids parents wait for, that sign or the happening that tells us that maybe we can let up a little and live. Knowing me, Ollie is going to have to tell me a few times before I get it.
Thanks for the post.
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January 25th, 2010 at 2:08 pm
Thanks for the inspiration! Here is to 2010!
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January 25th, 2010 at 2:12 pm
Although we do not face the challenges you face with your children. We also go through periods of survival mode when crisis and life changes hit us. We forget to say I love you we forget to appreciate. But when we come out of it I always try to get back to us Not always a easy task.
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January 25th, 2010 at 2:16 pm
The first blog post I read of yours was the one when you and Aaron went to Aruba. I laughed aloud at your jokes and was touched by how you honestly shared your personal life on the blog. I was also so impressed that you had made time to be together as a couple and I thought, “This is an amazing woman! All those family values in the signing time songs – she is really living it!” I immediatly signed up as a blog subscriber. Today, I love seeing ‘Rachel’s Blog’ in my inbox – I know I am in for a laugh, perhaps a tear or two and always an inspiration to be a better person.
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January 25th, 2010 at 2:24 pm
Thank you for again sharing such intimate parts of your life with us. I have a “normal” family and my husband I and seem to be in a “default relationship” at the time. “You go to work and school and I’ll stay home and care for the kid and clean the house. Then we’ll sit on separate couches and watch pointless TV until it’s time to go to bed.” Which all ends with the routine “I love you, good night.”
So maybe this year will be our year of cherishing. We’ll re-learn to love and cherish each other. We’ll appriciate and cherish our kids. We’ll cherish our life circumstance, whatever it may be (even if there are no mountains, 7-11s or Macey’s Grocery Stores for miles and miles.)
Yes that sounds good. Thanks for the encouragement to “Create our 2010.”
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January 25th, 2010 at 2:25 pm
Our family is going to practice “A Year of Changes” and hopefully “A Year of Surviving Those Changes” as we prepare to move halfway across the country in order to be closer to people that we love. It’s gonna be hard to leave the only place I’ve ever lived, and tough to find new jobs – but how can we say no? Everything is saying “yes” for us, so we’re going for it.
I like the Year of Yes, for the record.
)
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January 25th, 2010 at 2:32 pm
My hubby and I don’t have the challenges you face, but it’s easy for anyone to get into that casual, duty-splitting, roommate situation when dealing with life, work and kids. Our 2 year old loves everything signing time, and we’re expecting our second in about 3 weeks. Knowing that any big change can take a toll on a relationship, your post was a great reminder to keep things in perspective. Thank you for the well timed and much appreciated metaphoric kick in the pants!
And as far as disappearing debt goes, for what it’s worth, we <3 Dave Ramsey! Financial peace university is great and worth it…
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January 25th, 2010 at 2:45 pm
I’m hoping for the Year I Reclaim My Life.
I’ve started by committing to purging some clutter every week.
When my house is less cluttered it’s easier to keep clean.
When I’m in a clean and uncluttered environment I’m happier and function better and it’s easier for me to commit to eating healthier and exercising.
I’m taking baby steps but by the end of the year I hope to be in a place where it comes naturally again.
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January 25th, 2010 at 2:46 pm
Crap. Ouch.
I think Lucy hit us dead on too… More to come.
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January 25th, 2010 at 2:51 pm
As you know, if it wasn’t for your strong enough moment (and for sharing it) we would not have our daughter with us, as I would have said no to the challenges of raising a child with CP.
Now you have inspired me again, I love the idea of giving our year a theme, and living it out.
And what you say about marriage is so true, thank you for sharing that! What a real reminder for us who walk a similar path, because sometimes it feels like all we can do is survive and there is no time or energy left to look at each other and remember we are in this together, we are a team.
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January 25th, 2010 at 2:56 pm
What an inspirational post! I think any of us raising children, with extra challenges or not, can relate. Thanks so much for sharing.
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January 25th, 2010 at 2:57 pm
If the past ten months have taught me anything, it’s that I absolutely MUST Say “I love you” and spend time with those I care the most about. This year, for me, is going to be a year for re-building. Re-building and re-rocusing on family, personal strength, and happiness. Next year will (God willing) be a year to plan for fun and adventure. I know not to put anything off for tomorrow. But I’d rather, if given the chance, spend time with those I love than traveling the world. Thanks for being a part of my journey these past ten months. Looking forward to many more…
-Emily
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January 25th, 2010 at 3:08 pm
Lucy is often wise beyond her years. I think we all have ‘ouch’ moments in our lives at some point.
I’ve already decided this is the year we become financially fit since last year was the year of becoming physically fit (which is still continuing this year).
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January 25th, 2010 at 3:35 pm
I always loved the quote from Marjorie Hinckley, “Be kind, Everyone is fighting a Battle.” So true. I’m glad that you shared yours. Thank you! (Our baby passed away this past Nov. and we have been fighting that battle.) Thanks for your inspiring me to know that battles only overcome you and your family, if you LET them. I am winning my battle… but it is a fight. Thanks again.
Love Jess
thisandthataboutthebowmans.blogspot.com/
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January 25th, 2010 at 3:48 pm
Dear, Dear Rachel…..
Thank you for this blog entry. I needed the kick in the behind!
To Dadgineer, my partner in all things…not just my co-parent….
I love you! I am truly grateful for you being you!
To Aaron….
What a fine example of Father & Husband you are…so many people think we women/moms do it all and give little or no credit to Dad’s like you & Dadgineer who are right here in the thick of it WORKING WITH US; CARRYING OUR LOAD sometimes too!
Now I’m going to to have myself a BIG cry!
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January 25th, 2010 at 4:09 pm
Thanks, Rachel! Phillip and I often found ourselves in the “roommate” phase for several years… so disconnected that we were “emotionally divorced”. Fortunately, we were able to move past it… although it’s a struggle to keep our relationship a priority sometimes (but it’s worth doing). I love the idea of creating the year… we certainly have things we’ve put on the back burner for the sake of the kids. It’s time to change that!
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January 25th, 2010 at 4:12 pm
Rachel, this is a fantastic “challenge”!
This gave me an “ouch” of my own. Just so you know, I think couples of all varieties need to step back and take a look from time to time.
I think I’ll send this blog to my husband so we can have a family meeting about it later.
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January 25th, 2010 at 4:31 pm
This is a Year of Unfinished Goals
This year I am going back to school to finish my bachelors degree. My husband is going back to finish his masters.
We hope to get pregnant one last time and finish our family.
I started heavily working out two years ago and have always dreamed of running a marathon. Well this year I am running a 1/2 marathon (next week).
This year we have a budget and plan to become debt free.
This year my husband finishes his year long deployment to the middle east.
So since those are the major ones and you gave me the great idea of putting a theme to it, I wonder what other unfinished goals we can complete.
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January 25th, 2010 at 5:05 pm
Great post – and what amazing insight Lucy has! She is an inspiration to us – as are you
Thanks for your wisdom and for always sharing.
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January 25th, 2010 at 7:48 pm
Wow, Lucy’s insight is amazing… As I read that, I was shocked, but couldn’t help but chuckle.
My husband and I often get caught up in the kitchen calendar of events (with three buys kids), … who drives who where, and who will stay home/who will go to this event with this one… and we are all too often two ships passing in the night.
Your blog is inspirational. Thanks to Lucy for helping us reflect on our own lives!!
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January 25th, 2010 at 8:44 pm
Thank you for this post.
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January 25th, 2010 at 10:50 pm
Thanks for keeping it real, Rachel. This is an amazing post.
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January 25th, 2010 at 10:59 pm
you are seriously amazing rachel. thanks for sharing-i’m passing this along to all my married friends and siblings.
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January 25th, 2010 at 11:22 pm
Still wiping my entire face with my shirt. I salute you with my Bashaw, then I am deciding what I want this year to be. Sick of the 37th year of acne, crying, sitting back, excuses and hormones. OK, appointment with the endocrinologist first. That’s where I’ll start. Thanks, Ray. J
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January 25th, 2010 at 11:25 pm
I love this honest look at marriage with special needs kids. The statistics are 1 in 2 marriages will end in divorces, the rate increases to those who married under age 25. The divorce rate for marriages in which a child has special needs is around 80%. Filip and I got married at 18 and 20 years of age, we have 2 kids …with exceedingly rare disorders/syndromes/medical complications, plus a typical kiddo, we have passed an incredible test of faith early in our marriage, and we are still together. 10 years in Oct. We will get working on our 2010!!
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January 26th, 2010 at 12:00 am
Hi Rachel!
My husband and I have been married for 10 years almost 11 and have 2 kids. My son is 5 and my daughter 18 months. I wonder if my children think the same as Lucy. To tell you the truth my husband and I have a routine similar just like you, one cooks the other one cleans, and so forth, and sometimes we get so involved with our children that we forget about each other. My daughter has spina bifida and unilateral hearing loss. We didn’t know about her SB before she was born, it was unexpected, then it came the she is not passing the hearing test, her eyes are not quite working the way they are supposed to (she has duane’s syndrome). All of her issues have been difficult for our relationship, but we have survived 18 months and we can keep going. Our love is stronger than our daughter’s disabilities.
I’ll like 2010 to be the year of let’s do it! (I want to go to a concert, I’ll like to visit new places I have never been,…)
Thanks for your hard work and for sharing your experinces with children with disabilities. We have your signing time dvds and we love them.
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January 26th, 2010 at 1:16 am
Hi Rachel,
Ignore any statisticians who are not also geneticists (should eliminate most of them).
I’m reposting, this is awesome. You guys rock.
Jason
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January 26th, 2010 at 7:16 am
Thanks for this post. It really makes me think that we have some stuff to make priority focus on for 2010.
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January 26th, 2010 at 7:44 am
Wow. What an amazing post. Thank you so much for sharing all of this. You can thank Katie Clifford for pointing me here, and I’m so glad she did.
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January 26th, 2010 at 8:24 am
Thanks Rachel for this post – truly inspiring!
All the best to you all.
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January 26th, 2010 at 9:40 am
This blog entry triggered a late night discussion last night between Blondie and I about the life we live and how we are going to get through it. Did we figure anything out, no, but it just reinforced some of the stress we face and that we do still love each other very much.
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January 26th, 2010 at 9:52 am
For us this is “The Year of Moving-ON”
We have at least 4 major life changing events planned.
Who knows what unplanned events will come. Years of
work and waiting are all coming to fruition this year.
Thank you Rachel for reminding me to nurture our marriage.
Through cancer and deafness in one child we know your ER
experiences and school advocacy struggles. Thank you for
sharing and teaching us all.
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January 26th, 2010 at 10:10 am
How funny- this morning when I woke up, my husband walked in to the room and said a couple of things and walked away. I asked, “Don’t I get a hug?” And he carried on walking. I asked again, “I don’t get a hug?” He said, “What- are you talking to me?” (he thought I was talking to my son). I said, “Yes.” He said, “OH!” (same shock.) “Do you like hugs?!” I said, “You only ever ask for hugs when I’m half way through burning dinner, or have a garbage bag in my hand, or I’m rushing to get somewhere, so that’s when I don’t hug!”
I can’t relate to how your life is and how strong you both must be to keep your house running smoothly, but the shocked Aaron part did make me laugh. With two little monkeys in the house, we unfortunately do at the moment have that casual relationship with the division of responsibilties.
You have inspired me to pick a theme. It really does work, if you just find time to think about it and focus!
Thanks
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January 26th, 2010 at 11:45 am
Wow! You never cease to amaze me!
As you know we too live on this carnival ride of taking care of a disabled child with cerebral palsy…sweet little Cole (Coley). So, I know EXACTLY how easy it is to just ‘co-parent’. Thanks to your inspirational words of your “strong enough” moment and all of the “get fit” talk in the Signing Time chat, we have recently started to (re)appreciate each other…and take the time to/for ourselves while we get strong enough. Next month will be 23 years for us!
I love the idea of making your future happen instead of just letting things slide by.
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January 26th, 2010 at 1:27 pm
Rebecca: Sometimes I cringe at my own honesty. I hit the “PUBLISH” button and worry that, “no Rachel, you ARE the only one dealing with this kind of stuff… no one will relate”
Jonathan: Glad to send a much needed reminder. You weren’t crying at work were you?
Steve aka Dadgineer: You are right, every parenting situation is unique. But, in my experience living in survival mode is not living at all. It’s a recipe for burn-out and frustration. I didn’t know I was in survival mode at the time, and I doubt I could have seen it if someone tried to point it out. Now that we have had 4 years of creating our lives together we can see the vivid difference.
Cricket: Go Cricket go! Create it!
Janelle: I think just realizing that is important and you’ll likely be on the lookout for it in the future.
Hema: Thank you. I will do my best to deliver.
Stephanie: 2010- The Year of Cherishing! I love it. Please let me know how it goes. “pointless tv, separate couches” -ugh! But I get it. Don’t quit if he is suspicious at first:)
RobMonroe: I like 2010- The Year of Changes, but I don’t love the “surviving part” trust me, the default is survival… how about embracing changes?
Rachel: I’ve already blown my New Year’s Resolution, but I get so much more out of creating my year. Congrats on the soon to be new baby!
Julie Bo Boolie: 2010- The Year I Reclaim My Life! Perfect!
PS- don’t hope for it… declare it! There is a big difference.
Heather: I KNOW. It was not fun to hear. Plus I really had to control my reaction. I wanted to tell her she was wrong and give her all kinds of evidence that she was wrong. That’s the #1 signal that she is right LOL
Ellen Stumbo: I would really love for you to do a guest post on my blog about YOUR Strong Enough moment, if you’re up for it. I was so inspired by you and your strength!
Risa: You are welcome. For most of us, we find ourselves “surviving” no matter our circumstances and THAT is a waste of perfectly good lives.
Emily Arveseth-Hoerner: 2010- The Year of Rebuilding
Perfect.
The past 10 months, have been a lesson in forgiveness in some ways. I get mad and then HAVE to forgive and let it go. I refuse to be a victim of anger, a victim of what if’s, and of what might have been’s.
Kei: 2010- The Year of Becoming Financially Fit!
Thanks for the reminder. These creations often build on the previous.
Good point, you don’t have to throw out last year’s creation of Physically Fit
Renee aka Wife to Dadgineer: You are both so great! There will be deep dish Chicago pizza in March. I’m living for that right now;) Whatever works, right?
Patty: The good news is, the seed is planted for 2010. I hope that even without a “creation” many readers will shake it up. You talk about the “back burner” – one thing to consider is creating the “Year of Excellence” (that’s not “perfection”), but for me excellence is dealing with things when they come up… right when they come up, not letting them pile up and gnaw at me all day, week, year.
Brooke: “Dear Honey, read this… we need to chat!” LOL.
Lexi: 2010 The Year of Unfinished Goals. – at first read it looked like you were going to accrue a pile of unfinished goals…
no, that would be bad. “The Year of Completion” might be saying the same thing. What do you think?
mum2brady: Aw, as I bump into stuff that I think is worth sharing, I just share. If nothing else, we know we are not alone.
JenML: we have joked about “Well, you sure don’t act like it!” for years now, the way she said it was hysterical. So matter of fact. I told her I blogged about it and that you guys love it!
hsofia: See how normal I am?
katie: Thank you for passing it along. I hope you all find a piece of yourself in my writing and shake up your lives and relationships by choice and for the good.
~~more responses to come, I just HAVE to get dressed and go to a meeting~~
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January 26th, 2010 at 2:10 pm
I am looking foward to more responses. I recently wrote on you blog about being an astronauta, I hope you read it
. I would like to get in contact with you, how can I do that?.
Have a great afternoon!
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January 26th, 2010 at 3:15 pm
Rachel,
I am a fan of your Signing Time DVD’s and CD’s – we have all of them around my house. We love your work. A friend of mine just linked to your beautiful post on facebook – I had never seen your blog before. What an inspirational post. My best friend and I just started a lifestyle blog for women, called A Little Great at alittlegreat.com/ and if I could have your permission, I would love write up a post to link and share your great post. Let me know if that would be alright with you. I am a psychologist and think that there is important information in this story. Being a parent is hard enough on a marriage, but throw diabilities into the mix… you definitely have overcome the odds of this challenge. Thank you for your candid and lovely perspective. Your daughter is very wise.
I am a big fan. Thanks for sharing your story. Let me know if I can share it even more.
Corinne
alittlegreat@gmail.com
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January 26th, 2010 at 3:27 pm
I love the act of creating a year. We seem to be like you and Aaron and have many times said we were roomates in our marriage. Taking care of the house and kids left us not very connected. I love how children tell it like it is and bring us all back to what is important. I think 2010 will be the year of connecting. Thanks for the inspiration to be the best we can be by taking action.
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January 26th, 2010 at 8:06 pm
I love you, Rachel!
I think this is going to be a year of investment for us.
This year I’m going to be a gestational surrogate. Next year I’m going to make some awesome guys dads. This year and next, we’re going to pay off our credit card debts. This year and next, I’m going to work hard on the prerequisites to getting accepted as a transfer to UCLA. This year I’m going to prepare my family and my home and possessions to move to Los Angeles next summer. Hopefully by the fall of 2011 I’ll be ready to be accepted. This year I’m going to give of my possessions, my money, my time, and my heart. Hopefully it will all pay off next year. But even if it doesn’t turn out how we expect, I’m sure it will be interesting!
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January 26th, 2010 at 8:07 pm
Jess: If I know you it’s “The Year of The Butterfly” as you continually rebirth/recreate the amazing woman I know. Woman. Woah man! Woooooaaaaaah! Man!
Courtney H: Thank you for being the keeper of statistics. Those stats make me say “OUCH!” There’s pretty much no hope! No… No… there is hope, especially when we wake up and choose.
Rocio: 2010- The Year of Let’s Do It! -I can’t wait to hear where you go and what you do!
Unteins: Good advice. Thanks for the re-post… but the big question for you Jason… 2010 The Year of….. ???
momtojesse: 2010- The Year To Re-focus!
turleybenson: Thank you, I hope you saw something for yourself as well. Ah, cute Katie… she’s still 9 in my mind.
Linda: Thank you!
Steve aka Dadgineer: First of all, I may have said this before, you 2 are the best! I love the progress report. Second of all I worry when you say, “The life we live and how we are going to get through it.” Do you see my concern? I’m not going to even pretend to understand or know what it is like for the 2 of you. I do know that living in a state of survival takes it’s toll, it’s unavoidable. I love that you had a late night discussion and YES you guys have a mountain of stress! In the last few years one of my strategies has been to put together a team trained in Lucy we need back-up AND reinforcements!!!
Lucky Day: 2010- The Year Of Moving On! – sounds to me like leaving the past in the past, new frontiers, making new memories. Smiling. Laughing. Fun.
Jackile: Now Jackie, my dear, you know I am not going to let you get out of picking a theme with the excuse that you need to find the time to do it! Come on:) How about The Year of No Excuses! LOL. (Uh-oh, I know one of my friends who is likely to comment on that one.)
Leanna: A week in Las Vegas. Running a half marathon together. Those are achievements! Really! Who does that? Who takes off for a week when they have kids with disabilities? I have friends who won’t leave their kids for a week and all of their kids are typical. Pat yourself on the back (both of you) I am proud to know you and thrilled that maybe a nudge here or there has inspired you two to experience new things and cross new finish lines.
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January 26th, 2010 at 8:12 pm
Rocio: I do my best to reply to the comments of the newer posts, sometimes takes me awhile to go backwards and see new comments on old posts.
Corinne:Feel free to link or repost. I am glad you found us here.
Stacey: 2010- The Year of Connecting… (or re-connecting???
McMama: Wow! You are creating miracles, you know. You really are.
I had to smile about UCLA… that will be The Year of Warmth! LOL
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January 26th, 2010 at 9:35 pm
Rachel and family! You are all so special, and I thank you every time for sharing your life so honestly with the rest of us!
Your post made me cry, too.. as it frequently does! It’s so easy to just fall into routine, and go about our lives and what we need to do to get by. It takes work and effort to stay connected with that person that we fell in love with before kids. I sometimes think about who Jeff and I would be if we never had kids, and then I think how much more we have gotten to experience with them. And how much more I love and respect the man for the husband and dad that he is.
We are just beginning to embark on the journey of a life with a child who has some special needs. And it’s scary… I know that I don’t know exactly what that will mean for her or us. I’m not even sure what those special needs will be, I just know that she is different. It’s scary, and it’s frustrating, but I know that she’s beautiful, smart, and has a wicked sense of humor (and she’s only 10 months old!), so she’ll be ok.
It’s always reassuring to hear that you’re not the only one experiencing something. Thanks for all of this. The ST episodes, the Wednesday chat, and all of the wonderful folks I’ve met have honestly changed me and my outlook on life.
For my family, we do need to plan out our 2010. I usually set some goals for myself alone. And sometimes I accomplish them and sometimes I don’t. I am a natural planner. I like to have things to look forward to, and things laid out on paper. But, we have never done a plan for our family. Sure, we’ve had some short term goals, but nothing concrete, and never a theme. I’m going to go bring it up right now!
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January 26th, 2010 at 10:51 pm
Rachel,
An old saying comes to mind, “out of the mouths of babes oftimes come gems”
God Bless You and Aaron and your family always.
Allan
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January 27th, 2010 at 3:22 am
this was such a beautiful post!!! it’s amazing how children change us. and how parenting changes us… my husband and i went through something very similar after the hardest phase of our first special needs kiddo. when we both realized what had happened to us we were in disbelief. slowly we rebuilt and now our kids and our marriage is happy. it took a while to mourn and regroup- but it was SO worth all the hard work.
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January 28th, 2010 at 12:40 am
We have been praying lately for God to work in our lives, in our famiy in a BIG way. I read your post, and called my husband at work and told him to read. Then he got called into a meeting. When he came home, and told me about the possibility of 6 months in INDIA, I was FLOORED. It just goes to show, that for our family, putting our trust in Jesus and ASKING may lead to unimaginable things! THIS shall be our year of TRUSTING GOD to lead us wherever He wants us to go. I don’t know if India will work out, but I can tell you had it come up a year ago, my willingness would not have been the same. Today, I trust that if it is meant to be, it will happen and I’m thankful that even if it doesn’t happen, my heart is where it should be…WILLING!
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January 28th, 2010 at 12:41 am
Hey honey,
I think over the course of dividing our duties, keeping the house tidy was overlooked. You want it, or should I take it. Either way is cool with me.
Love you…really!
A
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Rachel Coleman Reply:
February 9th, 2010 at 4:37 pm
You are so cute. Why don’t you take it since you offered;)
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January 31st, 2010 at 9:41 pm
Thanks Rachel for permission to share this great post. You are live!
www.alittlegreat.com/2010/01/little-inspiration-creating-year-2010.html
You are very inspiring. Thank you. Thank YOU!!
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February 1st, 2010 at 2:52 pm
Hi Rachel.
I love reading your blog. You have such amazing talents. I find myself laughing a lot and even tearing up sometimes at your experiences and insight. You are incredible. So, I decided because of you that this will be my “I Can!” year. I always think thrice before doing things. Why??? I don’t really know. I miss out on a lot of stuff, that’s for sure. Our 22 month old has Down Syndrome. She doesn’t talk (yet) but the girl knows her sign language! I don’t want her to miss out on anything. Thanks for reminding me of how important it is to get out there and live life! See you at Yosemite (one of our family trips planned. Want to join us?). The falls are going to be exceptional this summer after the snow melts. We’re looking forward to a fun year. See you on the blog!
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February 1st, 2010 at 11:03 pm
Rachel, came across your blog from Twitter and I am so glad I did. We have actually met…I planned the “wake” for Jed at Westminster. Before that moment you were a celebrity to me and my family and now not only are you a celebrity, you and Aaron are amazing people with a beautiful life, beautiful children and a beautiful, real marriage. Thank you for your words. I have been trying for the last 32 days to figure out what 2010 will be for me…but my first thought was The Year of Strength and The Year of Cheap Adventure the second. Thank you again.
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February 2nd, 2010 at 12:02 pm
[...] the Signing Time series and a mom of two girls. This week on her blog she had an inspiring post on Creating The Year 2010. For the past few years, she and her family have declared each year The Year of ___________. [...]
February 2nd, 2010 at 11:31 pm
Oh, Lucy. Our Eldest has busted us on the same point. And as useless and infuriating as the stats are (are the staticians waiting for us to prove them right?) there’s a reason for those scary, high numbers.
It’s hard to carry the load, and to remember to love the guy who is schlepping alongside me. Some days (extra meds, unexpected diet change, wearing the mom-medic hat, school meetings, school meetings, school meetings), it’s harder yet. Especially since the sweet, naive, young guy that I married is not at all the guy that I’m parenting with now. Nor am I the young, silly and hoo boy naive girl that he married.
I think we left them behind, one or two diagnoses ago. But I also think we’re doing fine without them.
Thanks, Lucy. And oh, yes: I think we’re going for the year of balance. Balance needs and wants, stuff we have to do and things we want to do, time together and time being responsible people who buy groceries/fold laundry. Here’s hoping, anyway…
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February 3rd, 2010 at 2:05 am
I just found this blog and I’m too emotional to continue reading or writinng, I’ll bookmark and read slowly but I have to say you are SUPERWOMAN, my God
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February 7th, 2010 at 11:29 am
I discovered you through a friend whose son was obsessed with Signing time. Our family has had its own share of surgeries and grieving, and she thought I’d appreciate hearing from someone else to decided that laughing into the darkness was the only viable option.
(Of course, then MY kids discovered ST and I ended up certifying through the Academy, but that is a whole different story).
Your battles inspire those of us going through similar hard times, Rachel. Thanks for your honesty.
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February 9th, 2010 at 5:04 pm
Thanks for the blog. I read every one of them and am always inspired. For me, I haven’t sat down with my family yet, but I think some of our themes might be:
The year of connecting with others’ and creating friendships. We are new to our town and have some family around us but haven’t braved the task of connecting with other families’ and other children for our son to spend time with outside of daycare.
It will also be the year of making our home and yard more accessible for our son to use.
It will be a year to advocate and make sure our son has everything he needs to lead a full quality life.
I think I agree with the one year you had – the year of no more somedays.
Finally, it will be a year of improved communication. We do very basic sign and are looking at picture communication, but none of it can happen soon enough for me – in terms of getting resources and starting on projects.
Thanks again!
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February 15th, 2010 at 5:50 pm
So, do you want to know that your stats are great? (multiply.)
My mom had challenging kids to raise, often putting her in awkward situations. She says it helped her learn to deal with every situation.
To prevent the deafness of one from resulting in a 4th grade reading level, she went with Cued Speech. It worked. (Now, it’s mostly ASL.) I’m impressed with her and you. Keep it up, and it’s great to have kids. They offer such surprising insight, no matter who they are. And now matter how you choose to do deal with unique children, it takes dedication and commitment to raise them well. Keep up the great relationship you have built with your family. Good luck!
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February 15th, 2010 at 9:45 pm
I have just recently learned about you from seeing you on Noggin….I googled your name and it brought me to this blog and to tears. What a wonderful, smart, inspiring woman and mother you are. Thank you for sharing your story. I will love following your story from now on.
As for a theme for the year…you have inspired me to find one!
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March 13th, 2010 at 8:38 am
didn’t dawn on me till the end of the article who you were. i love the stats paragraph… deafness + autism. I always say I live outside the stats. or off the edge of the curve. just recently realized my own DH issues. trying to recapture the love of our youth. Thanking God for facebook because w/o a friend posting I would never have found your blog. awesome. I actually have a dream about DH and I at our 20 year anniversary..2 1/2 years away.. i’m going to start focusing and working on that dream
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March 16th, 2010 at 7:59 pm
Hi Rachel.
My name is Lindsay. A stranger on Facebook recommended your Signing Time DVDs (I saw that she was a sign language interpreter, so I contacted her for suggestions). My entire family has been watching and loving every minute of them ever since! Earlier today, I stumbled upon your blog, and this particular entry really hit home.
One of my twin babies, Elena, spent almost a year in the Neonatal Intensive Care Unit. She was born with a melting pot of congenital anomolies, and has been resuscitated more times than I care to remember. She was born with only one lung, and an airway that was 80% collapsed. Her esophagus was not (and still is not) connected to her stomach, but rather ended in a blind pouch at the top, and connected into her airway at the lower end. Her intestines were not connected to her stomach either.
Due to the collapsed airway, Elena ended up with a tracheostomy. Because of the fact that she only has one lung, we weren’t able to use the Passy-Muir Valve (her talker) until recently. To make a REALLY, REALLY long story short…we started signing with her a lot since she came home, but recently I have been feeling like we were at a stand-still. We have made a committment as a family to learn more sign language. It really allows Elena to develop her own voice in an otherwise loud world!
Your post speaks to me on so many different levels! As a mother of a baby who has so many rare anomolies bunched into one gorgeous, vibrant little girl…hearing the statistics gets pretty old. You have a wonderful outlook, and I look forward to following your blog!
Sincerely,
Lindsay Perez
www.caringbridge.org/visit/elenaperez
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April 3rd, 2010 at 7:54 am
We have the Baby Signing times dvds…and was thinking about other Signing Times products and came across your blog. I found it quite inspiring! Thanks. As I read more and more of it…I’m quite impressed with your ability to express your thoughts and how you and your family have come together now only for your girls but everybody. And then imagine my surprise to see you reference the corpus callosum…as my youngest son has dysgenesis of corpus callosum and he why we investigated sign language. Thanks again for being an inspiration for me to continue forward with my boys…
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June 7th, 2010 at 9:10 pm
Rachel,
I am months behind in even reading this post but it was SO inspiring! Your family is blessed to have each other.
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October 19th, 2010 at 7:11 pm
OMG this post feels like I am writing about my own life! The morphing of a marriage into separations of duties. My eldest is now 5; she also has cerebral palsy. We started signing with her when she was 9 months, due to suspected deafness. She passed her hearing test, but was essentially mute for the first 2 1/2 years of her life. She could sign over 65 words by the time she spoke her first word–what a LIFESAVER, and I’d have never done it if I hadn’t heard of parents like you teaching their babies sign language.
I want to create my 2011! I’d try to create the “rest of my 2010″, but I need more time to prepare!
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