The Last Hurrah

Only two weeks of summer were left and we had them planned, solid. The Last Hurrah would be 6 days in Yellowstone. See, Lucy was scheduled for surgery. She was scheduled just two days after we would be returning home from our Yellowstone trip. She and I would then spend the final week of summer vacation in the hospital while she recovered. Ideally she would be released from the hospital, just in time for school to start.

Ideally.

If there is anyone who should have learned to expect the unexpected, it’s me, but sometimes I just forget that part.

This is where our story begins.

I had never been to Yellowstone, so I dug through their website looking for information. Their website was not very helpful, there was simply too much information and I had no idea where to start. (so I will link you to it!!)

Yellowstone was… in a word, remarkable. We must’ve accidentally purchased the deluxe package because we saw it all. It was amazing!

Considering that I called a reservation center and was assigned a random campsite, we somehow ended up with an amazing site!

Just what we ordered

Just what we ordered

When I retire, I think I am going to be a Campground Host. Aaron is the one with the Parks, Recreation and Tourism degree to make it happen. I was going to be a nurse, because I wanted to help people, but I dropped out of college after my first year to become a musician. A musician! How silly is that? How many college kids bail on their degree to become musicians… pipe dreams I tell ya!

Back to Yellowstone and retiring. When I do retire, you can find me at Bridge Bay Campground, Loop H. I will have potted plants, an herb garden and a welcome mat in front of my RV. I will have a hammock hung between two lodgepole pines. Look for me in a high-end camping chair, the kind with two drink holders, a sunshade and a footrest. Living large!

Leah and Lucy are great little campers. I have proof. Don’t they look miserable?

Happy Camper

Happy Camper

Playing kung fu games

Playing kung fu games

We also take our food very seriously when camping;) Dutch Oven Meatloaf was our dinner.

I can cook anything in a Dutch oven

I can cook anything in a Dutch oven

Roasting marshmallows takes patience AND focus.

Don't Mess With the Marshmallow

Don't Mess With the Marshmallow

Aaron and I are ambitious hikers. So, on day two we set out for a 6 mile hike.

Clear Lake Trailhead

Clear Lake Trailhead


Such a beautiful trail

Such a beautiful trail

We would have seen two lakes and two waterfalls. I say “would have seen” because just 1 mile up the trail there was a sign that said the trail was closed due to “dangerous conditions.” Hmmm.

Okay! It’s time for Choose Your Own Adventure: You are a family of four, hiking in the woods. Your route, which was recommended by a Ranger at an Information Center, is now closed. You…
A. Keep hiking that path.
B. Turn around and hike back a mile. (Wow! A whopping 2 mile hike.)
C. Take another path.
D. Get eaten by a bear (you are in Yellowstone)

We went with option “C” and took another path. I’ll admit we stood there for a while and thought about it though. I realized that if it were just me and Aaron, I would have gone for the closed trail, but then again, I got into a paddleboat in a lagoon of crocodiles in Ghana… so, I bet you’re not surprised.

Yes, we took another path that lead us out of the woods, directly to the road. Then we followed the road to a parking area, and from the parking area to some well marked tourist paths. Boo! 🙁 Oh well, we tried! Still ambitious, we hiked down Uncle Tom’s Trail, a path that the Ranger said we shouldn’t bother trying with a 50 pound child in a backpack. (Bring it!) It is pretty much a billion stairs down to the bottom of a waterfall. (Truth be told it is over 300 stairs and a descent of 500 feet) Aaron took the pack with Lucy down and back up. I’ve gotta say there were people, carrying nothing on their backs, who were huffing and puffing harder than Aaron. (Go Aaron, go!)

Somewhere Under The Rainbow

Somewhere Under The Rainbow


Catching His Breath

Catching His Breath


That's a whole lotta H2O

That's a whole lotta H2O

Then I took Lucy on my back and we “hiked” back to the car.

Self Portrait

Self Portrait

2 miles = Smiles

2 miles = Smiles

We had lunch and then continued on to the next stop.

Did you know that the center of the Earth smells like hard boiled eggs? Yeah, charming I know! In Yellowstone, there are countless geothermal areas, some spouting water and others just letting off steam, and all of them laced with varying degrees of sulphur. (Fabulous!)

Some are holes of boiling mud.

Boiling Mud Pot

Boiling Mud Pot

Others are multi-colored fairy pools.

Do You Know The Colors of the Rainbow?

Do You Know The Colors of the Rainbow?

Some look like science projects gone wrong,

Yikes!

Yikes!

and some look like science projects gone right.

Aaron and Lucy at Giant Geyser

Aaron and Lucy at Giant Geyser

Most of them smell bad! I really wish my blog was scratch-n-sniff right now.

I hiked Lucy around the mud pots. Leah thought this stop was torturous. The hot sulphur blasts of steam fogged her glasses and sent her reeling… she likened it to the open sewers in Ghana. Lucy, on the other hand, just hollered, “Pee-yew!” at each stop.

While driving up north to Mammoth Hot Springs, we saw bison.

Stay in the car kids

Stay in the car kids

And we saw a bear!

Roll Up The Windows Kids

Roll Up The Windows Kids

We stopped to hike the Tower Falls Trail.

Tower Falls

Tower Falls

This time, I carried Lucy down the trail and back up. As we hiked, I could hear Lucy saying something, quietly, to herself. I finally asked her, what she was saying. “I’m just counting your steps.” (That makes two of us)

When we were climbing back up from the waterfall, I stopped to catch my breath and drink some water. As I started back up the steep trail, Lucy could tell I was working hard, she leaned in, over my shoulder and quietly said, “Mom, this is what you are training for.”

Ok, talk about words of encouragement!

Did I tear up a little? Uh, maybe.
Did I pick up my pace? Yeah. I did. Because suddenly, I felt a little less tired.

But you know what, Lucy’s right! This is the event– waterfalls, dirt, trees and steep rocky paths with Lucy on my back. She’s right!

A few minutes later a curious voice asked, “How old is she?” I turned to see a couple in their sixties right behind me. The woman had asked the question. “Oh, she is nine.” I was breathing hard but doing my best to keep my voice steady.

“She’s nine?” the woman asked, surprised. Now I wondered, was she surprised because Lucy looks younger than nine or was she surprised that a 9 year-old was on her mother’s back? She continued, “Well, let me tell you something.” (here it comes) “When my daughter was five she always wanted me to carry her…” (ah, the latter) “and we came up with this game you ought to try.”

I kept smiling. I didn’t want to interrupt, that would be rude, but I already knew how this was going to play out. Somebody was going to feel bad.

She kept talking, “See I would walk ahead and tell her all she needed to do was meet me. Once she met me, it was her turn to walk ahead and I would meet her. You see? Then, before she knew it, she had walked the entire way!” (helps if you can walk)

“That’s really great.” I said, meaning it.

See, I don’t like this. I don’t try to leave people feeling like they shouldn’t have said anything in the first place, but I was pretty sure that in a few minutes, she was going to be kicking herself. I turned, looking back down the steep path and said, “The thing is… this trail isn’t wheelchair friendly… at all. So, if I didn’t carry her, she would just miss out on all of the beauty.” I said it smiling, cheerily, not in snide or rude way, I promise!

“Oh! Oh! I am sorry! She’s in a wheelchair?” (no she’s on my back, but…)

“Yep, she has spina bifida and cerebral palsy.” Again, I state it as a fact, like saying “the sky is blue.” No pity. (Please no pity.)

“Oh! My! I am sorry! So, so sorry!”

Was she apologizing to me or to my daughter? Was she “sorry” that Lucy uses a wheelchair? Or “sorry” for suggesting I force Lucy to walk? It didn’t matter, really. For the past eleven years I have worked on ways to give information about my kids, without adding drama. Additionally I have honed my skills, so that I can take someone’s reaction and diffuse it, and explain it to Lucy or Leah so that they can see it is just someone else’s point of view. It is not the truth. Most people look at Lucy and they can only see what is “missing.” They are blinded by the wheelchair, the disability. They cannot imagine the full and beautiful life Lucy has. The full and beautiful life we have, yes, even with a child in a wheelchair.

I used to want to smack people upside the head when they said ridiculous things, but now I listen to the reaction that goes off in my head… it’s just my synapses firing. I listen to the reaction, my reaction and then… a very calm, collected mommy chooses the words that come out of my mouth. (most of the time)

I just kept smiling and the woman continued, “The poor little thing!” (Please don’t say that in front of my kid.) I quickly cut her off for fear that we might be dazzled with some of my least favorite adjectives like “crippled” and least favorite statements like “she’s bound to a wheelchair.” (Want to see bound? Watch her without the wheelchair)

“Oh, no apology needed.” I said. “Lucy is a very smart and very fun little girl. We’re not going to let dirt and hills stop us from seeing so many beautiful things, are we Lucy.”

The woman continued, “Well, I really can’t imagine doing what you are doing. You are going to be a very, very strong young lady!”

“That’s what I’m working on.”
I smiled.
She smiled.

It was quiet.
We all kept walking.
We came to the parking area.
We completed the trek.
We did it.
And you know what? I don’t even think the woman was kicking herself.

Yes, this is what I’m training for.

She's not heavy. She's my daughter

She's not heavy. She's my daughter

To be continued…

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About Rachel Coleman

The opinions and late night musings published on this blog are Rachel de Azevedo Coleman's alone, and are not ever intended to represent the opinions and sentiments of any organization or product that Rachel is, was, or will be associated with. Rachel Coleman is the creator and Emmy-nominated host of Signing Time!, the children's American Sign Language vocabulary building series. She is also the creator and host of Baby Signing Time, Rachel & the TreeSchoolers, and Rachel & Me. Rachel now serves as the Executive Director of the American Society for Deaf Children, a 501c3 nonprofit established in 1967 by parents of deaf children. ASDC is the American Sign Language organization for families who are raising deaf children. www.deafchildren.org Motivated by her child, Leah's deafness, Rachel has spent the last 18 years creating ASL products to help bridge the communication barrier between hearing and signing communities. In 2006 Rachel founded the Signing Time Foundation, a 501c3 non-profit dedicated to putting communication in the hands of all children of all abilities. In 2014, the Signing Time Foundation launched a 50-Lesson online ASL curriculum called "Sign It: ASL Made Easy" that is available free-of-charge to families with deaf or hard of hearing children ages 36 months and under. Apply at www.mydeafchild.org. For those who do not qualify to receive Sign It ASL for free, they can find it for purchase at very reasonable rates on www.SignItASL.com. Rachel and her husband, Aaron, live in Salt Lake City Utah. They are parents to Leah who was born profoundly deaf, and is now a senior in college at NTID/RIT in Rochester, NY. They are also parents to Lucy who has spina bifida and cerebral palsy, and recently graduated high school. In 2010 the Colemans were joyfully reunited with Rachel's daughter Laura. Rachel is proud to be Laura's birth mom. Laura was placed for adoption as an infant in 1992 when Rachel was 17 years-old.

71 thoughts on “The Last Hurrah

  1. Rachel, I’m with the majority in thinking you are an inspiration. Ever since your “strong enough to be your mom” post, before I tell my children “No” in response to their requests to do something, I’ve been trying to step back (mentally) and ask myself WHY am I saying no? What’s the objection? Is there a real obstacle here, or just a convenient excuse? More often than not, I’ve found the time/energy/enthusiasm to complete the activity, when I might have otherwise backed out, using laundry, lack of energy, or work as a reason why we can’t do something. Thanks for helping bring my attention back to the TRULY important things. 🙂

    Unfortunately, it isn’t just children with disabilities who have inappropriate comments made to/about/in front of them. My children are…. precocious, for lack of a better word. And we encourage them to question the world around them… We have been on the receiving end of rude comments tin the vein of “children should be seen, and not heard” or “children should obey without question”, etc. Which is an insult to my parenting skills/techniques, and a not-so-subtle way of implying that my childrens thoughts/questions aren’t worth hearing. Some people just DON’T THINK before speaking. (And others do, and it still doesn’t change things, unfortunately.) I try to remind myself that all we can do is NOT be those people, make sure that our children don’t become those people, and work to teach ourselves and our children how to respond to them with grace and dignity. Thanks for setting a great example. 🙂

  2. Hello. It looks like you guys had a great trip. My wife and I also have a son who has difficulty with walking. He has a rare DNA disorder. You and your husband has shown us that these kind of things don’t have to slow anyone down. He uses sign langauage, thanks to you and Leah, and the rest of the crew, but my question today is, can you recommend some kind of carrier that we can use to carry him on our backs? Similar to what you use with Lucy.

    Thanks

  3. You have the most amazing, inspirational stories AND you are a great writer AND your family is so blessed. God sure knew what He was doing when He was planning on putting Aaron, you, Leah and Lucy together. I’m so glad He did.

    After this post I found out we have another thing in common…being a Campgroud Host after retiring. A couple years ago I told my DH that is what I wanted to do and he agreed that he would too. It’s been years since I’ve been to Yellowstone. Thanks for sharing your adventure!

  4. Rachel – you rock.
    Just found this blog from a Twitter..

    Wanted you to know, I wanted my children to sign since before I was married. I just knew that was important.

    Then we had beautiful Isabelle. And she was born with symbrachdactly. Basically her left hand is a thumb, partial pinkie, and nubbins.

    And then signing took on a whole new level. Not only was my daughter with a special hand going to sign because it’s an awesome way to communicate, but she was going to kick butt at it. She was going to use that left hand as much as the right.

    And Rachel, she does. At 18 months, she amazes me & others. I get asked so often if she’s deaf..or if they see her hand first, does she have problems.

    No, my daughter doesn’t have problems. She is waaaay more advanced than most 18 month olds.

    Thanks for helping to contribute to her awesomeness with “Baby Signing” time.

    Thanks for being a mom that gets it. No pity, no sadness – we just have amazing girls that lead amazing lives not in spite of their differences, but proudly & unabashedly with them.

    And if you ever need a super cute little signer, Isabelle is available & in West Jordan :o)

    Take care,
    a new faithfull blog follower
    Jennifer R.
    J

  5. The word inspiration comes to mind, but seems absolutely inadequate to describe you and your family. Thank you for the reminder to think before we speak. I think that everyone needs to hear that on a regular basis.

    I used to get the “he must look just like his daddy” comment all the time. What I would want to say is “Well, actually, he doesn’t have a ‘daddy’ and he does not look like his FATHER. He looks just like my Daddy, if you must know!” A couple of times, I did say it. Then I learned that it did not make me or my child feel any better. I learned to just take a deep breath and say, simply, “No.”

    Thank you for sharing your stories with us all. You truly do inspire me to be a great mother and a great person.

  6. Since I grew up so close to Penn State University, I used to think I had to have a couple impressive degrees to make an impact on children. Now, as a mother of a one-year-old, I know I can simply teach my daughter simple sign language and she will benefit. She hears perfectly, but I get so excited when she so vividly demonstrates the signs for “more” and “daddy” Mommy looks more like “silly” at this point, but it’s just those baby steps that mean the world. So far I have Signing Times for Babies, but I’m really hoping to purchase the next levels of Signing Times.

    By the way, changing your degree to music was not a mistake. You have a beautiful voice; which is so much in my range. It makes it easy for me to sing along with you. I guess a country girl from PA can dream a little too. If you ever make a journey to PA, I’ll make sure I get to meet you.

  7. Your words are always such an inspiration. I think I’m going to print the picture of Aaron “Catching His Breath” and hang it next to the tread mill where I don’t work out as much as I should as added inspiration and motivation.

  8. Rachel,

    When you write a book I want to get a copy of it.
    I love reading your blog. I make a point of checking in just to see what’s new.
    Leah and Lucy are so lucky to have you and Aaron as parents. The girls are amazing as well 😉

    Seriously, when you slow down long and decide (if you haven’t already) to write a book then let me know. I find inspiration in the way you and your family live your lives to the fullest.
    I would love to see you do a children’s book as well. I have a day care and I would read it to my kids in a heart beat. (They already love signing time with Alex and Leah!)

    My prayers are with Lucy in her upcoming surgery as well! (I read your more resent blog first.)

    Tammie

  9. Dear Rachel,

    You are very graceful and composed. My little Malcolm doesn’t look like anything is wrong with him now that he no longer has a trach and a g-tube, which is wonderful! However, he is very delayed, doesn’t talk, has lots of temper tantrums, tries to run away into traffic, etc. There are certainly setbacks to ever disability. People look at me funny when he starts banging his head in public. If I say, “He has autism,” most people understand. (He was recently diagnosed.) What I have trouble with is when people comment on how strong I must be. Why? Because I don’t feel strong at all. If only they could see my breakdowns at home, in the car, in parking lots.

    I need to be a little more graceful and composed as you are. Lucy and Leah are beautiful people, and Lucy, in particular, has a most wonderful name (my mom’s), no disrespect meant to Leah, atall.

    I send all my wishes and prayers for a successful, non-eventful surgery.

    All my best,
    Jessica

    PS – Malcolm is one of your biggest fans. He will basically only watch you and “Cars.”

  10. Not very many blog posts can move me to tears. This one did. Beautiful.

    I met you in the rain at our Buddy Walk in Northern Virginia. We were so disappointed with the weather but so happy to meet you.

    You are a beautiful person and have a beautiful family.

    Hugs!

  11. Wow Rachel!! You are an amaizing woman!
    I began reding your blog a few weeks ago, the more I read, the more I admire what you do for your daugthers. I sometimes try to imagine how my 18 month old daughter will be in the future, she was born with spina bifida (and unilateral hearing loss). We did not know before she was born, so it was a big shock. Luckily it was closed, so her surgery was not until she was 6 months old. I am not athletic at all but reading your blog inspires me to try to work out so I can carry my daughter when she gets older. Last time she was at the doctor’s office she was not quite 20lb. I wonder If she will be out of the baby seat after her 18mo. appt.

  12. Pingback: Rachel Coleman » Blog Archive » Finding My Inspiration

  13. Rachel, You are my inspiration. We go camping with our special needs daughter and try to include her also. I have met you once when you came to Battle Creek Michigan and I am about as tall as you. If you can carry Lucy then hopefully when Clare is that big I can still carry her on my back. Clare has severe PVL and spastic quad CP and is 6 years old and 28 lbs. We have loved you Signing Time videos so much , that is the only thing she will watch. She gets all excited when she sees Lucy. Keep up the great work that you do in you life and in the Signing time community

  14. Hello Rachel

    We watch Signing Time DVDs almost daily; it has really helped building the communication skills of our developmentally disabled 3-year-old boy, Daniel.

    Can you tell me where to look for a backpack that I might consider for taking Daniel on hikes? Until I read you post, I never imagined I could take Daniel on the trail. But now I’m inspired.

  15. Pingback: She's Not Heavy... | ohamanda.com

  16. Hi Rachel!

    So I’ve been dying to know, did you ever get a new backpack to carry Lucy around? If you did, what kind? My daughter is really big for her age, and we also love camping and hiking, and I figure what’s good enough for Lucy has to be good enough for us too!

    Thanks!

  17. I felt compelled to leave a follow-up to my own comment. When my daughter was born, in spite of all the running around I was doing to take care of her, I was so exhausted I still managed to put on about 100 pounds. I kept thinking I needed to to something about it so I could keep up with my daughter once she started getting mobile.

    We started my daughter on “Signing Time” when she was two months old and my wife and I have followed all the goings on since that time. When I read this blog entry I asked myself “How much do I suck? Here I have a happy, healthy, beautiful little girl, and I’m not doing half as much as Rachel and Aaron are doing for their daughters.”

    I did print out the picture of Aaron “catching his breath” and hung it on the tread mill where I do all of my workout. I lost the extra 100 pounds I had put on and a bit more, I got back into shape and have greatly improved the quality of time and the relationship I have with my daughter. All thanks in no small part to “Signing Time.” It makes such a difference to so many people on so many levels in so many different situations.

    I could go on about how wonderful it was, being able to communicate with my daughter beginning at two months, but that’s a comment for another time.

  18. i love how you work hard to remove the stigma with different abilities. i love the positive, strong example you’re setting for your daughters (and us all)!

    i also love how every comment i have read has been positive. you’ve built a wonderful community where people can share and be heard and seen, but also be respected and welcomed.

    you do great work and deserve every Hurrah you have a chance to enjoy!

  19. I also have a son who needs a wheelchair to see the world. What kind of backpack are you using for your daughter? I haven’t packed my son anywhere since he outgrew the one we had.

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