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
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
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
Roasting marshmallows takes patience AND focus.
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
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
Catching His Breath
That's a whole lotta H2O
Then I took Lucy on my back and we “hiked” back to the car.
Self Portrait
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
Others are multi-colored fairy pools.
Do You Know The Colors of the Rainbow?
Some look like science projects gone wrong,
Yikes!
and some look like science projects gone right.
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
And we saw a bear!
Roll Up The Windows Kids
We stopped to hike the Tower Falls Trail.
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
To be continued…
Tags: 2009, Aaron Coleman, Bear, Bison, Bridge Bay Campground, camping, Clear Lake, Leah Coleman, Lucy Coleman, rachel coleman, Tower Falls, Uncle Tom's Trail, Yellowstone National Park
August 31st, 2009 at 11:52 am
tears. the beauty of the scenery. the beauty of the story. the beauty of your heart. and the beauty of Lucy.
As a mother to 5 children – all adopted and all with various special needs – I completely understand. I too have gone through the evolution of what I say to people and how. But I ALWAYS say I care way more about what my kids hear than what strangers hear.
Thanks
Beth Gore
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August 31st, 2009 at 11:53 am
What wonderful lives your girls have! Love seeing your pictures and experiences.
Thanks for sharing!
We were camping last week & a man commented that my daughter s/b walking instead of in the jogger (on a trail). I smiled, but he kept on that it would be much better for her. Then I said she couldn’t do long distances since she hasn’t been walking long without her walker and had surgery.
Then he finally shut up with a big ‘Oh”!
Why do people feel the need to comment?! And they say the most ignorant things in FRONT of our kids!! If my daughter could talk she’d sure give it back to them.
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August 31st, 2009 at 11:54 am
I didn’t think it was possible to feel any greater respect and admiration —and INSPIRATION— for you and your whole family. This post proved I was mistaken. Not just the physical strength that you and Aaron have developed but the grace with which you handle those awkward situations. Wow.
I remember the stinky mud holes and the bison and bears from a visit many years ago. I’m not sure I would’ve attempted those hikes back then. Now? Well, you’ve got me looking at things differently and I’m not pleased to admit that I’ve let Nik’s challenges become MY barriers to living a full life both with and without him. Thanks for the kick in the pants. This mama’s gotta get back in shape or risk missing out on a whole, rich, happy life.
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August 31st, 2009 at 11:54 am
I am sure the woman was apologizing for her own insensitivity (unintentional, of course) at suggesting that you make Lucy walk, and any verbal diarrhea after that was just embarassment nerves. I think you handled it very gracefully.
I also just have to tell you, like I know everyone does, that your girls are so gorgeous! And how lucky they are to grow up in a family that takes them on such amazing adventures. They’ll have those hiking and camping memories for the rest of their lives.
I cried a little at Lucy’s motivational words to you. Kids can perceive things that we grown ups completely miss sometimes.
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August 31st, 2009 at 11:55 am
Yay, Rachel! When I grow up, I’m going to be just like you.
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August 31st, 2009 at 11:59 am
Amazing pictures. Amazing momma.
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August 31st, 2009 at 11:59 am
You are so my hero ! I love it when people ask me questions about my bio kids vs. my adopted kids and they ask if they’re real. Well, as a matter of fact they are all REAL and they are all mine, lol ! Or do they speak English ? No, they’ve only been in America 4,3, and 2 yrs. and they still speak chinese, duhhh !!!! Are they brothers and sisters ? Why, yes they are now !
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August 31st, 2009 at 12:01 pm
Once again you made me cry… in a good way. Love the picture and the inspiration, Thanks Rachel
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August 31st, 2009 at 12:16 pm
Rachel YOU ROCK! What a wonderful life you are creating for your family! I find myself speechless most times when people say stupid things to me about my son! (Speechless – but with a smile wanting to smack them!) What grace you have to say the perfect words! By the way – would love to have the name of the back pack you carry Lucy in – I could see where it would come in handy for my son- although I am sure it comes with a nice price tag!(HA) I need to get myself in training too! You are truly an amazing woman & Mom! Please don’t stop telling us your story!
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August 31st, 2009 at 12:18 pm
Wow! You continue to amaze and inspire me! I appreciate the insight you offer by sharing such personal and private feelings. It really helps me think about how I will (and do) handle when these situation come up with Cole. Not that I am even close to being prepared for this hike, but…some day I would LOVE to show the wonders of the world to Cole.
(ok, I have decided as a general rule, to keep my tissues handy and when you have a humorous post, if I don’t cry from laughing so hard, then I can just pack the tissue away for the next time. I guess because I can relate to, or see it coming in my future, a lot of what you say.)
PS. Did you have 2 different carriers? One looked like she is higher the last pic looked lower on you. BTW-absolutely stunning pics! Ok, the smelly egg thing..I recall you worrying about that in Sulphur, OK too. LOL And, Aaron-way to go man…climbing all those stairs with an extra 50 lbs…impressive! Lucy-you apparently are not afraid of heights up on your dad’s back!
Leah-I always hated when I opened the dish washer and it would steam up my glasses!
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August 31st, 2009 at 12:31 pm
Beth Gore: I agree all around! Remarkable beauty everywhere. As for what our kids hear, I am with you. Lucy takes it all in. A little boy told her that her voice is weird and she was a mess for a week, until we worked through it.
momtwo2gr8kids: I guess they are just trying to be helpful, giving their 2 cents. Unsolicited parenting advice, from a total stranger. It is an interesting phenomenon though.
Niksmom: Believe it or not, there was a good portion of trails that were accessible. I was surprised. We only brought Lucy’s power wheelchair so she could “run around” at camp. We didn’t think to bring her manual chair too. Next time we will.
Cat: It was so motivational. I really would love to find a half-marathon that will allow me to run with her in a jog stroller. Only, I might bawl the entire way.
Kate: That’s very sweet. I just don’t want to grow up at all. I like where I am right now:)
Charlotte: Oh, your comment made me laugh. Adoption introduces so many “fabulous” curiosity driven comments. “Oh, They must look like their father!”
Ronai: We have SO many pictures and they are all just breath taking. There’s more to come. This is only Part 1.
Patti: See, the urge to smack upside the head must just be innate. But, we must learn to control that urge, even for the most deserving.
The backpack is actually one that we have modified. We had to cut part of it out so that it would fit Lucy and it is not meant for a child so large. I’ll see what details I can get for you though.
Leanna: Yes we do have 2 carriers. The ergobaby is more like a wrap. We have not found a way to make it work for Aaron and Lucy as a team- he’s too tall and she’s too big. Lucy and I wear it for short (2 mile) hikes. Since her front is right against my back, we heat up really quickly.
The large carrier is one we got when Leah was a baby. It has metal frame, but as I told Patti, we have had to make some adjustments to it. Aaron always uses that one.
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August 31st, 2009 at 12:33 pm
You can never tire when carrying a precious diamond.
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August 31st, 2009 at 1:01 pm
You amaze me. I’m speechless and humbled! I will be positive for the rest of the day! Much love to all of you!
Em
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August 31st, 2009 at 1:29 pm
sweet!
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August 31st, 2009 at 1:37 pm
Yellowstone is fabulous! I spent an entire summer there in college working in that reservations office you called. I’m so glad you got out into the trails and really were able to soak in the raw beauty.
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August 31st, 2009 at 1:40 pm
We were at Yellowstone this summer too, and did Uncle Tom’s hike as well. We do it almost every year. My husband and I were talking about if we would try it once we have kids (hoping to adopt) and decided that we will. It was motivation for us to try it a little faster, and push ourselves a little harder this time, and work out when we got home. (On top of your great Disneyland posts) And that’s only for a 20 pound baby… I’ll admit I was huffing at the top. Go Aaron!! That really is a gorgeous “trail.” I’m so excited that your whole family was able to see it. And seeing a bear, yeah! We’ve only seen one in the last 4 years of going, usually twice a year.
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August 31st, 2009 at 2:42 pm
You ROCK woman!!! I still don’t know how you guys have the energy or strength to hike 6 miles with Lucy on your backs or how anyone does it. But you are so awesome in giving her that opp that most kids in wheelchairs do not get. Hey maybe you and Aaron can come up with a backpack carrier design to hold a higher weight than what they typically hold.
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August 31st, 2009 at 2:44 pm
Once again you have made me cry. I love reading your stories about life. I am in awe of how you have the right words to say. I’m the one that walks away wishing I would have said something differently. I, too, am always on alert when the questions come about my children, adopted and special needs, I have had to discuss with children the remarks of others. I need you around for a tutorial. Thanks for your insights and inspiration!
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August 31st, 2009 at 2:55 pm
Holding back tears! Thanks for sharing the beauty of your family
and the beauty of yellowstone -never been there however your post was like a personal tour. Again, thank you for sharing!
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August 31st, 2009 at 2:57 pm
Yeah! Your training is paying off. Not just the physical training, but the training you’ve been doing through Landmark. Way to go on your quick thinking & answers.
The pics are amazing! The smiles on everyone’s faces are wonderful. So glad it was a great trip.
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August 31st, 2009 at 3:26 pm
I love your pictures – especially the last one of you and Lucy. It’s so powerful. I’m happy all your training has paid off so you can carry her through a fantastic vacation!
I was really touched by your story about the couple asking questions. Kudos to you for wanting it to be as less painful for both parties as possible. I was born with a facial disfigurement that also affects my speech, so I can relate to Lucy, especially to what you said in a comment about someone commenting on her voice. I’m a little bit curious of how Lucy handles it if people ask her rather than you or Aaron?
Also, I usually added your blog to my RSS feed, and your blog post showed up tonight, but I couldn’t read it. It might be that you have to do something with your settings, letting your posts be readable in feeds.
I hope Lucy’s surgery went/will go really well!
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August 31st, 2009 at 4:32 pm
You did it! All your training paid off! You are an inspiration to us all! Thank you.
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August 31st, 2009 at 5:14 pm
If Lucy was 100 pounds, you would have made the same trek, nice job.
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August 31st, 2009 at 5:14 pm
Beautiful pictures! I hope to be able to camp with my kids some day. I have never been to Yellowstone, or even the Grand Canyon. Going to have to work on building my muscles and maybe I will give it a go next summer!
I think you handled yourself beautifully. Lucy is way beyond smart, I love that girl!
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August 31st, 2009 at 6:04 pm
I love Yellowstone and try to make it every couple of years (Love shooting the animals (uh, maybe I should mention I’m a photographer)) but oooh, just reading about that sulphur is making me feel ill all over again… I hate that stuff.
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August 31st, 2009 at 6:34 pm
Thank you for inspiring me to extend grace to those who make unsolicited comments.
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August 31st, 2009 at 7:13 pm
Your blogs are always so colorful, and now you’ve added smells to boot! Scratch and sniff – no thank you; your descriptions are very much on target.
So glad to see everyone enjoying the beauty of the environment and in family time on your life-a-thon.
I envy your strength, determination and positive spin, it’s all very uplifting. YOU shine!
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August 31st, 2009 at 7:17 pm
I need a backpack (or frontpack – the kid’s a mommy hugger) that can carry a 50+ lb kid (my kid can walk but he’s a flight risk) where do I find one?
And wow. just wow.
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August 31st, 2009 at 7:26 pm
Beautiful post. You are lucky to have Lucy, and she is lucky to have you. Sounds like you were made for each other.
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August 31st, 2009 at 7:31 pm
I look forward to your blog entries with wonderment and delight because they always inspire, impress and invigorate. The four of you are such amazing people! Whatever powers that be who picked you and Aaron to be the parents of your amazing dynamic duo of daughters sure made the right choice. I am proud to know you and Aaron and hope that someday soon I will have the chance to meet Leah and Lucy in person. Give them big giant hugs from Oklahoma!
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August 31st, 2009 at 7:38 pm
You got some amazing pix! I wish I was as eloquent when I speak to people that don’t realize what they are saying about my child may be inappropriate. On an elevator once a man told me that my daughter was sticking her tongue out at him. I looked at her and said “Yeah she is” he responded with “Some people shouldn’t be parents”. I’m pretty sure he’s right but definitely not about me!
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August 31st, 2009 at 7:49 pm
Patti & Leanna: It’s a Kelty pack
Thalia:
Even a 50 pound diamond?
Emily Hoerner: I just love seeing you here. I wish I could do the walk coming up in honor of Jed. I’m out of town though.
Jessica: At least you didn’t yell, “Lambchop!” you just can’t do that on a blog.
MereCat: it was a funny conversation while making the reservation too. When I told the guy that Lucy had a wheelchair he seemed convinced that we needed to be in a spot right next to a restroom. I kept saying, “No I would prefer to be in a wooded area and somewhere with less traffic than a spot next to the toilets.”
Marie: many of the people who were there while we were never saw a bear. We were pretty excited. Lucy said, “My heart is pounding!”
Janel: Well this time it wasn’t 6 miles and Aaron and I had a little laugh about it and realized we may need to reel it in a bit. 6 miles is a long way to go! We are always looking for new carrying devices. Sometimes I wish I still had a sling to put her in, just to run in to the store, but I don’t think Lucy would appreciate it.
Stacey: There have been plenty of times where it all went wrong. Mostly it is NOT saying the first thing that comes to mind, because THAT is the reaction. If you can let that go without saying it, you can then choose your words. It takes practice.
Connie: It is like a personal tour:) Leah took some great photos too. I was really impressed. I will use some of hers in Part 2.
Kei: When Aaron read your comment, he said “Kei’s right! I was thinking the same thing!” My Landmark Forum was only 3 years ago, sometimes I can’t believe it has only been 3 years. In the meantime it has saved my marriage, saved my relationship with Lucy, and with my sister Rebecca. I can pretty safely say it has saved Signing Time, since I would have sabotaged that for sure by now LOL, because I was pretty sure I didn’t deserve to be happy.
Sandra: Most people ask me and Aaron things before they ask Lucy. I wonder if they assume she can’t talk or that perhaps she couldn’t answer. So if someone says, “How old is she?” I say (sweetly) “You can ask Lucy. She can tell you herself.” If they ask me about Lucy’s disability or why she’s in a wheelchair, I ask Lucy if she would like to tell them, or if she would like me to.
Cricket: You are welcome. I wonder though, will it be inspiring when I share how I mess up entirely?
Dadgineer: You know it! You said it perfectly.
Cathy: Did you just say “Someday” – I believe you did! Must I remind you, there is no “someday” there is only only today. (Lucy loves you too!)
Doug: The smell was comical in some ways. If we drove through one of those sections with the windows down, the kids would start making accusations. That’s all I’m saying about that.
Mary: I can’t believe how much practice we get. Just breathe. Most people are not intentionally mean or hurtful. They are curious and they think the are being helpful.
Anita: All the theme parks have 4-D rides, you get smells, it rains on you, ya know? I just think we need to give technology a few years to catch up.
Navi: You can wear the Ergobaby on our front. Lucy saw a photo on the box and has been asking me to try it. She thinks it looks fun… I’m not so sure about the “fun” aspect though.
Sonja: All in all we are good team, the four of us.
Vickie: Hugs received!
You know, I think that you and my mom would hit it off. Every time I read your comments, you say things that would come out of her mouth.
Cammie Heflin: Oh my gosh, that made me laugh out loud! I don’t know what to say. I’m AMAZED!
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August 31st, 2009 at 7:59 pm
Rachel, your comment about a half marathon reminded me of a video I saw of a father and son. The son has cerebal palsy. teamhoyt.zrainmedia.com/videos/together.htm
As in the video, YOU are the body and Lucy is the Heart! Fabulous post!
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August 31st, 2009 at 8:29 pm
Thanks for your continued insight into who you are, who you strive to be and how you love your children and family so dear. I appreciate you Rachel!
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August 31st, 2009 at 8:37 pm
I’m crying here (good tears of course!) As I am often saying, you are are such an inspiration to me, and your girls are so very very lucky to see the beauty of this world because you MAKE it happen. I now want to hop in the car and head to Yellowstone, such beauty!
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August 31st, 2009 at 8:48 pm
Hello, Can I just say I am a BIG fan of yours!!! I am so happy to have come across your blog. My 2yr old son has profound hearing loss in both ears and my whole family has come to LOVE your Signing Time Video’s. Not only do we watch them to teach our son but my husband and I watch them to also learn sign language along with my other children.
I know what you are talking about not wanting people to pity Colton for his hearing loss. To me he is a normal little boy, a blessing from God. He is my miracle baby born at 29 weeks along with his triplet brother and sister.
You handle that so well. I never know what to do or say when people start to talk to Colton and then I have to explain he is deaf so he needs to see their mouth move so he can understand. I hate getting the look and the comments. My least favorite comment is about him being so smart even though he can’t hear. Sometimes I just want to say “Duh” of course he is smart, he is probably smarter than most 2 yr olds because he has had to learn to communicate without the sense of hearing.
Much Love and I can’t wait to read more of your blog!!
Tanna
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August 31st, 2009 at 11:17 pm
Another inspirational story. You and Aaron amaze me. I ran into a friend in the baby carrier business. She owns Babyhawk, a fantastic carrier. I spoke with her about you and Lucy and your challenge of finding a great carrier for her. She is working on a structured carrier design (buckles and padded waists) and said if you wanted to email her yours and Lucy and Aaron’s measurements, and what you need most in a carrier, she would come up with something that would work for you. She also has a child with CP, so knows exactly where you come from and the challenges you face. I teach babywearing to new moms (a volunteer job) and make structured carriers myself, but I refer you to her, because her manufacturing facility is better equipped to make it for you, especially for a 50lb child. I would imagine the Ergo is quickly losing it’s ability to meet your needs with it’s short body height. Grace keeps asking for her picture of her with Rachel and Lucy. So cute. She was quiet as a mouse when she met you (so unlike her) but can’t stop talking about you now.
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August 31st, 2009 at 11:43 pm
Coming from the public school system – I teach kindergarten – I see all types of people and parenting. I LOVE that you give your children more opportunities and experiences than most children could ever imagine. You are an inspiration and your family is so fortunate in so many ways!
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September 1st, 2009 at 8:07 am
Another inspiring story.
What a great trip you had! Laughed at the scratch n sniff part. We had our honeymoon on New Zealand’s north island, and there were sulphur pools there- pee-yew indeed…!
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September 1st, 2009 at 9:48 am
Rachel, where do you get the backpaks that carry an older child? I love your blog site. Your words are inspiring and I am encouraged to do more with Lillian. Thank you!
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September 1st, 2009 at 10:43 am
Great post, I love the science experiment gone wrong, the steep freaking staircase and that your whole family got to enjoy such a great trip!
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September 1st, 2009 at 12:21 pm
You can be camp hosts to Yellowstone. Ray and I can be camp hosts to Death Valley…dutch oven meatloaf sounds heavenly…
D
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September 1st, 2009 at 12:39 pm
That seriously made me cry. Especially the “she aint heavy, she’s my daughter” part. You’re so awesome dude. I seriously love & admire you.
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September 1st, 2009 at 1:02 pm
I absolutely loved this post. I hate the pity comments and that people say those things in front of my child and other children too drives me crazy! You handled the situation perfectly. Wish I could always do that well. Your pictures are amazing. You are a strong mom in so very many ways!
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September 1st, 2009 at 1:05 pm
Amazing and inspirational story! How did the surgery turn out?
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September 1st, 2009 at 1:31 pm
I opened my eyes yesterday and was thinking of you. How I loved being with you in YW and how proud I am of the women you have become. You taught me lots then and still do today. Thank you for this wonderful vacation to Yellowstone by way of your life. Love you.
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September 1st, 2009 at 3:29 pm
Jess: Love it!
Jen: Ah, I just lay it all out there. Thanks!
Jaclyn: That is my intention- to inspire spontaneous vacations.
Tanna: I am so glad that you found us! Big hugs to you and Colton. Can’t wait to get to know you better.
Vera: I am ABSOLUTELY interested in Babyhawk. I checked out their site last night. For some reason Facebook won’t let me message you back. Check your messages on the Signing Time Forum. It was great meeting you at Sea World (shhh that’s coming up in Part 2)
donna: I love hearing that from teachers. I find myself pulling the girls out of school sometimes for amazing adventures and so far the school has been great about it. There’s just so much world to see!
Jackile: I know! You think “hot pools” or “hot springs” are more like a hot tub, not a pot of hard boiled eggs.
Maria Bateman: I am working on finding that answer. We have altered our Kelty pack so that Lucy-long-legs actually fits. I’ll let you know how the BabyHawk works out if we can get a custom one.
DKAZ: I really had to pick and choose because we have SO many cool pictures. The place is amazing. I thought it was harder to descend the stairs because they were a mesh metal and you can see through them to the valley below. It just messed with me.
denine driggs: Are you going to live in Death Valley year-round?
We would love to do another trip there. I’ll make the meatloaf.
Danielle Marchant: Wouldn’t that make a great tattoo?
There is an episode of Miami Ink where twin brothers come in. One brother had cerebral palsy and was in a wheelchair and the other brother had no disabilities and was taking off for college. The one going to college came in and got “He ain’t heavy. He’s my brother” tattooed on his arm. Aaron and I cried!
Heather:well, practice makes perfect and sadly, we tend to get a lot of practice.
denine driggs: Ooooh. Good question. “How did the surgery turn out?” That will be answered in the next post.
Susan Dayton: I love that you stopped by my blog! You have NO idea how much I learned from watching you Susan… talk about someone who handled things with grace.
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September 1st, 2009 at 9:39 pm
Rachel, my kids are at the age where they comment about other people. We’ve been working to have them save comments and questions for later in private. Can you tell us what my ideal response would be when things slip out in public?
We have a group of differently-abled kids we see at the library every so often. Last week we sat down to color and after a few minutes I realized the other child was blind. My two love to talk, and they were all jabbering away when Natalie blurted out, “Why won’t you look at me when we’re talking?” The girl answered that she was blind. Of course I don’t know what to say to that…. so I asked Jane to show Natalie how she was coloring such a wonderful picture if she couldn’t see it with her eyes. Jane explained that she preferred to color with crayons so that she could feel the drawing. She used heavy and light pressure to make her picture instead of worrying about colors. Colors are silly she said, unless it’s jelly beans and then colors are really important. Clearly Jane, at age seven, was accustomed to educating the public and dealing with impolite enquiries, but I could see her father stiffen then relax as things played out.
Another day they were playing puzzles with a young boy in a wheelchair. They’re curious. Can they acknowledge the chair? What if they ask questions about the chair? What if my rowdy little four-year-olds drop books on his legs? I was so proud of them that day because they withheld all comment and questions until later. I can’t help but think that’s safest. Tell me what to teach my kids, what would make your parent’s-heart sing.
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September 2nd, 2009 at 11:21 pm
Oh, Rachel! You are blessed with a wonderful family, each and every one of them! I’m so happy to read your personal stories and reflect upon them myself. You are so inspiring! Thank you for teaching me so much!
With my daughter, I’m not sure what the future will hold, as far as mobility issues, and her just “looking” different to other people. It’s interesting to hear how you handle such comments with grace and tact. Just today someone very close to me told me that my child “is a mess.” I bit my tongue and walked away shaking my head. She didn’t mean it as it sounded, but it still hurt a bit.
I’m going to gift myself the Landmark Forum this fall. I think it would be a wonderful learning experience, and I thank you for introducing me to it.
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September 3rd, 2009 at 11:46 am
That brought me to tears. You and Lucy are so inspirational! We are going to Yellowstone next week, I will be thinking about you guys and how much you inspire me! I hope you do a meet and greet in SLC soon, I want to bring my daughter to meet you, she loves signing time.
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September 4th, 2009 at 12:01 pm
As an occupational therapist, you teach me a great deal; as a mother, you inspire me!
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September 5th, 2009 at 6:12 pm
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.
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September 6th, 2009 at 6:48 am
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
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September 7th, 2009 at 9:38 pm
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!
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September 8th, 2009 at 10:53 pm
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
)
Take care,
a new faithfull blog follower
Jennifer R.
J
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September 9th, 2009 at 2:29 pm
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.
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September 9th, 2009 at 8:33 pm
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.
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September 10th, 2009 at 1:18 pm
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.
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September 23rd, 2009 at 7:16 pm
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
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September 23rd, 2009 at 11:23 pm
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.”
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December 17th, 2009 at 2:15 pm
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!
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January 24th, 2010 at 10:51 pm
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.
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February 8th, 2010 at 11:39 pm
[...] my “bluff”, even though I ran two half-marathons last year. Even though I’ve hiked through Yellowstone with Lucy on my back, even though I took Lucy to Disneyland and transferred her countless times from her [...]
March 28th, 2010 at 12:51 pm
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
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June 5th, 2010 at 5:43 am
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.
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June 22nd, 2010 at 12:46 pm
[...] they can transfer Lucy from the bathtub to the wheelchair as she gets older, so they can hike through the mountains when she’s 12, so they can always always always say YES to Lucy and her [...]
July 11th, 2010 at 10:18 pm
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!
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July 27th, 2010 at 4:45 pm
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.
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