Strong Enough To Be Your Mom – Part 2

Remember last summer, I was in Mexico having nightmares about a promise I had made to Lucy.
(If you missed that, read: Strong Enough To Be Your Mom – Part 1)

Anyway, last summer in Mexico I found an advertisement for a glass bottom boat. I thought it would be perfect for Lucy, because she is not a fan of putting her face under water. She has dysarthria<--- which came along as a sidekick to cerebral palsy<--- which came as a sidekick to spina bifida (Thank you very much).
Because of her dysarthria, snorkeling does not work for Lucy. It is tough for her to get her body to either breathe through her mouth or her nose.

I asked Lucy if she would like to see the fish, but do it in a boat and not even get wet! She loved the idea. I called the company to make the reservation. I asked them about wheelchair accessibility 😉 there was none. A bus would pick us up and take us to the main location. We would board a speedboat and it would drive us out to a small submarine. Then we would transfer onto the sub go down a tight spiral staircase to our seats below!

No wheelchair. Not for any of it. We would be gone for at least 6 hours.

Could I do it? Could I carry all 40+ pounds of her? Could I carry her as I exited a boat, out in the ocean, and hopped over to a sub?

Was I strong enough to bring her to new experiences? Or because of my lack of physical strength was she literally “bound” to her wheelchair? Was I strong enough to show her the world beyond sidewalks and ramps? The worlds of dirt and gravel and sand and water and beauty? What would she think of me if I failed her? Worse yet… what would I think of myself?

My nightmares the night before included being dropped off with her in the desert, with nowhere to rest, nothing but sand, sand dunes and smooth rocky hills. After hours in the hot sun, moving her from piggy-backing to a side carry, to baby-in-arms hold, I frantically looked for anyone who might have a stroller. Even in the deep sand a stroller would give me a little rest and we could still slowly move forward. I moved her to my back as we bouldered across mountains of rock.
When I woke up I was exhausted, soaked with sweat.

That was a year ago.

I was able to hold her as we stood in line, transferred to the boat, transferred to the sub and back to the boat. We had a great time together and I don’t think my daughter ever knew my fear… my fear that I would let her down. The fear that I might be just one more “No!” in a world full of people, who throughout her life, will simply look at her and tell her, “No.”
On the Boat Cancun '08

Something changed in me that day. I began working out harder at the gym, running faster and farther. I looked for better backpacks to carry her in.

With Lucy as our inspiration, Aaron and I signed up with a personal trainer and started training with him 4 days a week. I felt silly doing it, I didn’t want to tell anyone because it felt so “Hollywood!” (Um, YES! I TOTALLY have a personal TRAIN-ER!)
But I wasn’t going to be stopped by feeling silly or cliché. My reasons were bigger than that. When Jared, the owner of the gym, and Matt, our trainer, asked what our goals were, Aaron and I said, “We definitely need to be able to dead-lift 50 pounds, over and over and over again. Every single day.” I said, “I don’t care if I lose weight, but I need to get stronger. We have to increase our overall strength because we have an 8 year-old in a wheelchair and every day she is growing. We have to keep up with her!”

Jared Trevino, who owns our gym, Fit Forever, offered to come to the house and watch how we lift and transfer Lucy. He watched us load her in and out of her car seat. Then we loaded her wheelchair in and out of our car. Next we lifted her from her wheelchair and sat her on her bed, then moved her back to the wheelchair. Then we transferred her to her feeder chair at the dinner table.

I set her on her back, in the bottom of the tub. I stepped in, straddled her and lifted her out, stepping carefully over the edge, one foot at a time, like I do when she has a bath. (A maneuver that is much easier when she is fully clothed and dry.)

We put her in her small wheelchair and “bumped” her up and down the stairs. We put her in her stander and then pulled her out of it.

Jared then showed us how to do each of those things with correct form, giving us more strength, more control, protecting our lower backs and protecting Lucy. We had been doing it all wrong… but only for the last 9 years. :)

Our trainer, Matt Williams, says that very few of his clients train as intensely as Aaron and I train. I wonder if many of them have as much at stake as we do. We are Lucy’s legs. We are the wheelchair, when the wheelchair says “No.”

When we workout on our own, people literally stop and stare. They stop us to say that they are inspired by us and that they can see our determination. They assume we are in training for a physical, competitive event like a triathlon or marathon. When they ask what we are training for I say, “I’m training for my daughter, Lucy, who’s in a wheelchair. I’m training for our life.”

Lucy is my motivation. When I don’t want to run, I still run… and I run… because I can run. She may never run, not in her whole life, and I just won’t take my ability to do so for granted. I push myself physically so I can carry her. So I can run with her. I do it, so I can be a “Yes.”

A couple of months ago, Lucy asked, “Mom, can just you and me go to Disneyland sometime? Just you and me. Not Daddy, not Leah.” (In my mind I quietly, nervously, calculated the number of times I would need to lift her. Then I told myself to “STOP IT!” And I told my daughter, “Yes.”

Welcome To DisneylandEverybody say "Dumbo!"

“Mom, can I hike through Goblin Valley?”
“Yep.”
Goblin Valley, Utah

“Mom, can we hike all the way up to Delicate Arch?
“Absoultely!”
Delicate Arch - Moab Utah

Let’s just say it… there’s quite a difference in my physical appearance from Signing Time Series 2 to Baby Signing Time 3 & 4. Actually, I have been all over the scale map from the first show to the most recent.
wo8i2478_2dsc_5411_2

Honestly, I’ve struggled with my weight my entire life and finally, finally I’ve found something that motivates me. A reason to push myself. A reason to really ask, “Is that all you can do Rachel? Are you sure?”
One word- Lucy.

A few nights ago I carried Lucy down the hall to get her ready for bed. I placed her on her bed, so that she was sitting up and leaning against the wall. She smiled at me and said quietly, “Mom, I can tell you’re getting stronger.”

And that’s the best reward of all.

Lucy Coleman

78 thoughts on “Strong Enough To Be Your Mom – Part 2

  1. Ronai: Have we been doing this for more than 2 years? I guess that’s a good thing though, none of that get fit-quick stuff. FYI-I’m wearing your pants in the Goblin Valley photo. You’re going to have to earn them back LOL. Let me know when you’re ready for them.

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  2. Rachel – wow. I managed not to cry when my two year old asked me not to go to work for the first time. She’s been home with my wife all summer (teacher schedule) and has rarely noticed when I walk out the door. Today was different.

    So anyway – I managed not to cry or be too frustrated by having to sit in traffic after that, but having read both of these stories I am crying tears of joy for you and your “motivational” Lucy. All of your adventures look incredible.

    (Side note: I love that you use an Ergo Baby. We love ours and have used it everywhere from the beach to airports. Wonderful tool.)

    Now I feel like I need to run…

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  3. You might be Lucy’s legs and carry her physical body, for the rest of us you carry us mentally through times of weakness and doubt. You carry us to a higher state of mind full of love and life. The first time I saw you and your incredible husband work out I held my head a little higher. When I was working out after that I thought what if I needed to carry a love one like Lucy, would I be strong? My work outs are more intense sense I have known you. Your love and passion is contagious and exciting. You don’t only carry Lucy you carry us all. Keep inspiring the world and working out like a super hero. We are all blessed to know your special family.

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  4. That was such a wonderful inspiration! Since watch the Sighing Times vids, and now reading about your family and you life and your motivation, I have come to learn what a wonderful mother you are and it is very inspiring and uplifting to me! I am the mother of 2 little girls, the youngest has Down Syndrome and several other medical conditions requiring 24 hour care (tube fed bolus feeds every 3 hours all day all night) and my “strength” has to come in a different form… I have to have the mental strength to sleep very little and still be able to care for my children and remember all of the little one’s therapy times, feeding times, med dosages, doctor appointment dates and times, and all the other things I’m sure you know go along with parenting a special needs child. I love how you wrote that you run, and run, and when you don’t want to run anymore, you still run because you can… that is about how I feel at 3 in the morning at feeding time…
    I would love to travel with my children as you have with your daughter…

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  5. RobMonroe: Nah, you don’t “need to run,” you get to run.

    Jared Trevino: You are great Jared. Thanks for your willingness to go above and beyond… and outside the gym to help us become stronger.

    Katie: I agree, there is a mental strength that comes with a young person relying on you.

    3e: You are welcome!

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  6. Is there a stronger word than “strong”? Because strong does not even begin to describe you! You are an absolutely amazing woman. Thank you for the reminder to me, a parent of a child who is healthy, to keep going on those days when I feel like I just can’t. Words cannot express how thankful I am to you for Signing Time and for the inspiration you give me!

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  7. You are amazing!!! You are an inspiration! Lucy and Leah are so lucky to have you and Aaron as her parents.

    I did notice the physical appearance in the videos, but I didn’t think much about the reason behind it. You are looking great and I can tell feeling great.

    You probably don’t feel it… but, you really are amazing.

    P.S. I can’t shout enough about how I love communicating with my daughter because of Signing Time! Thank you!

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  8. I’m so glad I visited your blog today. I was having a rough morning and I needed some inspiration and I came back to your site. You have me in tears here. I love your program and your videos. My daughter (now 21 months old) has watched them since she was two months old. She doesn’t really speak much yet but she signs all the time and she understands quite a bit. I’m so glad I discovered your story and your products when I was pregnant. My daughter is not hearing impaired but she’s a little behind the “normal” kids. I really love watching Leah and Alex grow and about hearing how your company is doing so well. I really hope you do train certified signing instructors across the U.S. I’d be interested in doing that. I’ve always enjoyed signing and want to do more with it. I can’t think of a more rewarding way to use my communication skills. Thanks for your inspiring words and stories. You have a beautiful family and a beautiful soul. ~Mandy

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  9. Oh and one more thing Rachel, if there is ever any way I could help you and assist in spreading your message, please let me know what I could do! I have a big mouth. LOL! My friends say I’m great at PR and marketing. I’m a great writer too. Let me know if there is a way I can help you, Leah, Lucy and others! I’m looking to add more meaning to what I do.

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  10. OMG, the ending made me cry!

    This is such an inspiring story, Rachel (to add to all the others). I feel funny reading it because I too have been enjoying lifting weights (with a trainer… eep!) and finding it easier to carry my daughter… who is 22 months old and weighs 27 pounds.

    That’s great that the “Big AC” is joining you in the muscle-building project. 😉

    I wanted to tell you that you lost too much weight for BST volumes 3 + 4 – that you can relax and eat more now! But now I understand what happened.

    Good for you! You’re such an amazing person and your family is such a huge inspiration.

    (I will stop complaining about having to carry Naimah now.)

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  11. Sandy Lovell: Thank you and… Please keep shouting it out!

    Mandy: Be sure to sign up for our Signing Time newsletter. All of the information about certified Signing Time instructors will come out there. I am glad you are excited, I am too. It’s going to be a great big Signing Time Family!

    Mandy: Good to know. It’s awesome how many very skilled volunteers we have. Some even end up as employees. If you see something you can offer, please do!

    Madeleine: Why do we feel silly about that? I just don’t know.
    And I think what happened in BST 3/4 is this; I had just lost about 25 lbs in 3 months, my skin and body hadn’t adjusted. I have lost another 10 lbs since then and I think I look pretty normal. But I am open to feedback and I do eat more now and not just grilled chicken, veggies and brown rice :)

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  12. Rachel –

    Wow. I love this post! Thank you so much for sharing this with us!

    You may not know it but you are the newest member of our family.

    My daughter, Kaila, has Auditory Neuropathy. It’s confusing, but the long and short of it is this- she can hear, but for some reason she isn’t talking. She turned 2 in May. For a long time I refused to do sign language with her for two reasons. 1. I was lazy. 2. I was afraid that it would become a crutch for her and that would delay her speech even longer.
    Then I realized something – Children WANT to be like other people. They WANT to talk. Giving them the option to communicate with sign language won’t change that. They will use sign language as long as they need it but as soon as they are able to speak, sign language will become secondary.” I purchased the entire baby signing time set and Kaila LOVES it! It is the first thing she asks for (by signing of course) when she wakes up in the morning! I’m almost embarrassed to admit that one of the 4 dvds is almost ALWAYS playing!
    Our “team” from the school came out the other day and they were AMAZED that Kaila has learned about 100 signs in just 4 weeks!
    Thank you so much for what you have provided in Signing Time! We LOVE listening to your sweet voice singing all day long! Kaila just might be your biggest fan! 😉

    Lots of Love,
    Suzi Bullock
    Nebraska

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  13. I BOW at your AWESOMENESS. When I think I have worked hard, and I read this, I feel like I haven’t worked hard enough. You have inspired me to do the things that I have put on the back burner. Bless you and your family. :)

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  14. Kim: Love Team Hoyt! My dad wants to do a triathlon with Lucy.

    Suzi: I am so glad you got over the fear that signing would be a crutch… and thinking that a crutch is even a bad thing… you know, when you break your leg and you NEED a crutch, you are thankful for it. When your leg heals and you don’t need that crutch, you stop using it.

    oh amanda: You’re a mom. You’re strong!

    Asperger Ninja: Thank you. (blush)
    I am glad to know I have inspired you. The back burner is an awful place to put things.

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  15. rachel i love this post,
    i have tears still in my eyes. i have been following your blog for a while now, i have two children lilly who will be 3 in jan., and max who was 1 in oct., max was born with Down syndrome. so on some level i feel the same way of being in shape and healthy, i told my husband “we need to live forever” i need to be around as long as possible. i need to be here for max, don’t get me wrong lilly to just in a different way. so i am trying really hard to get healthy.
    i wanted you to know i heard about signing time from other moms in my Down syndrome family network. lilly loves it and you should see her with max… signing to him its so sweet. max already is signing more and all done:) i truly feel your dvds made a huge difference:) so thanks for that:)
    oh and we are super excited to meet you… i am a member for our first annual Down syndrome awareness walk in neenah wisconsin and you… “Rachel from Signing Time” are going to be the big entertainment!!!
    so again looking forward to meeting you and beautiful post:)
    -sara pingel

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  16. hi, as mom to 6 kids, 5 with special needs and 3 of which are cerebral palsy, i understand and felt your post deeply. a co-worker told me the other day that i would have to stop lifting my 5 y.o. who can not hold her head up because she is getting so big and will hurt my back…. and i just looked at her like she was crazy. i will do anything for this child. i am taking your training as a challenge. i have been focusing on my children for a long time, but also need to take care of myself so i can continue to take care of them. thank you for the reminder and the inspiration. we LOVE your videos! rachel

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  17. We’ve been watching BST 1&2 for quite some time now…we received them as presents from a friend, for our daughter Natalie’s first birthday. She loves them, and now cradles when she wants to watch! She’s caught on to quite a few of the signs. Because of this, for Christmas we bought her BST 3&4.

    The first thing that jumped out at me when we popped in BST 3: your weight loss. The first thing I said to my wife was “OMG, look at Rachel, she looks terrific!” Not that you looked bad at all beforehand, but as someone who also works out, it was immediately obvious to me that you’d been doing some serious work! Upon reading this blog (I actually did a search – Rachel Coleman weight loss – to see how you pulled this off), I’m glad to see that, instead of obsessing over weight, you were more concerned with health and strength. THAT’S the way to go!

    One mild criticism, regarding BST 3&4…don’t get me wrong, we enjoy them, as does Natalie, but sometimes it feels like the signs are taking a backseat to the music and your vocal chops. Not in a overly blatant way, but I never got that feeling from watching BST 1&2. I’ll say this much…and I’m sure other watchers can attest…those songs sure have a way of staying in your head…and making you smile.

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  18. Rachel, you are amaizing. I wonder if I´ll be able to do the same for my daughter with spina bifida. She is only 17 months (almost 18), but I keep wondering what her life will be like in the future.

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  19. Hi Rachel, I just found your website through your blog at Athleta. This was such an inspiring post, you are a wonderful mother and an amazing person. I hope all four of you have a great half marathon on Saturday, I wish I could be there to cheer you on.

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  22. I discovered your blog via Ellen Stumbo today and understand your motivation. My son is 19 as of yesterday and totally dependent on us for all his ADL’s. I, too, worked out with a personal trainer and now on my own 3-4 times a week. When I started, I told the trainer, “I need to be able to keep lifting Tim. If any part of my body happens to look better in the process, that’s a bonus.” Thanks so much for encouraging others and sharing a bit of our world.

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  24. I read this blog when you originally posted it and bawled my eyes out. You are SUCH an inspiration. I’m ashamed to say that despite the truth in your words it took a few months for it to really sink in and for me to start making changes in my life.

    I am morbidly obese (highest 330lbs) and suffering medical complications due to my weight — complications that would mean a much shorter lifespan than I should have and complications that meant that I wasn’t being the kind of mother I knew I should be for my 10 and 6 year old.

    But always at the back of my mind, this blog entry. This knowledge that I had to be stronger, fitter, healthier and that I owed this to my daughters.

    I finally found the strength to start my journey in October 2010. I’ve lost 45lbs since then (99 days ago) and I’m still motivated and energized and PROUD to finally be making myself strong enough to be their Mom. I still have over a hundred pounds to lose, but I WILL do it and I will remember your words every time I feel like giving up.

    Thank you Rachel.

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  25. I wish that you could call me on the phone and tell me more about your workout routine and diet. I am a stay-at-home mom who likes to run and do some casual weight lifting at home, but I am getting heavier each year. Though I do not have a daughter with special needs, I too feel like I need strength and health to meet the demands of young and growing children. I love learning from everyone who experiences success in this field.
    We have been watching a lot of Signing Time here because I recently received the awesome and rewarding assignment to learn ASL sufficiently to translate church lessons for a deaf boy at church. The videos help engage my children in this effort too and helps me augment my vocab too. I am grateful for this contribution you give us. There is nothing else like it out there. We all love it. As I noticed the physical changes in you, I wondered how you accomplished it. While I still would like some more details for my benefit, it is NEAT that Lucy gets to inspire so much good – this being just a smidgen of her influence. What a blessing are children :)! They change the world!
    Seriously, if you would like to tell me more of your routine, I’d be grateful for the info, and I think you have my email now. I understand if you haven’t time, or think that too weird to communicate.
    Thanks for your influence on the world too, for good.
    Rebecca

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