Life and Living with Crohn's Disease

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Crohn's Lyfe Tough Talk

Being the Support System: Living with Crohn’s Disease

Let’s continue the Mama Love today, shall we? Don’t forget–Awesome Mother’s Day Running Mom Giveaway up now (Ends Friday)! And I just added some more to the pile…

I have something incredibly special today. Suzlyfe’s Mommy, Clare’s First Guest Post. I think that sometimes you all read my blog just for my mom’s comments…and I’m ok with that. She is freaking awesome. I want to keep my gushing to a minimum, because I really want this post to be all about her, but I have to say a few things. My mom has been my rock and strength throughout my life, but never was she more sorely needed than when I was sick and going though my diagnosis. I couldn’t have gotten through the ordeal (or anything else, really) without her. But here also lies the rub: Yes, you need to fight your fight, but rarely are battles won without allies. When you are in the midst of a battle, you are not necessarily in the position to best help those who are supporting you. 

So how do you (the support team) make it through seeing your loved one go through an ordeal (illness or otherwise)? Who supports the supporters? How do you act as an ally/support system without losing who you are in the process? 

Take it away, Mama Clare. (LOVE YOU SO MUCH I CAN’T STAND IT):

Living with Crohn’s Disease: The Support System

(I’ll use the words “child” and “her” because that was our situation, however, it could be a spouse, parent, sibling, friend, what-have-you)

So, your child’s doctor has just told you that your precious child has a chronic, auto-immune, inflammatory, incurable, non-fatal, episodic disease and will require the need for a specialist in (said field) for the rest of her life……..

breathe meme

Before anything else: breathe…..just stop right there and breathe. If you don’t, you will pass out and that certainly won’t help your child.

Your first reaction will probably be denial, but please recognize that, at a much deeper level, there is FEAR, in all capital letters. (SuzNote: Remember when I discussed the difference between “fear” and “anticipation or excitement“? This is fear.)  This isn’t news you can just take lightly– and you need to give yourself a chance to absorb it and a private place to react to it. Your child does not need you to fall apart right as she comes out of recovery.  

And a glass (or tasting of 3) of wine doesn't hurt!

And a glass (or tasting of 3) of wine doesn’t hurt!

Now, after you breathe, get a hold of yourself and then realize and acknowledge that life as you had known it has just changed—I’m sorry, but that is the truth. Your second reaction might surprise you, it certainly did that to me. I felt a sense of relief, because now we had a diagnosis. Having a diagnosis gives the monster a name and a plan of action can begin to take shape for dealing with the monster. (SuzNote: A great post on Dealing with Diagnosis)

The Moment of Diagnosis

After the biopsies came back positive for Crohn’s, I asked her doctor to tell Susie that, indeed, she did have Crohn’s Disease. I was so unglued, that I knew I’d scare her to death if I told her. She needed to hear it from someone who knew what she was in for, not someone who was walking a very fine line trying not to burst into tears at the drop of a hat. Dr. S also told Susie that this was her disease, not her mom’s and she, Susie, needed to learn to read her body and be able to tell her doctors what was going on inside of her.

She also said that we would start Susie on a course of medications to see if we could get her Crohn’s under control. At the time, she didn’t say the meds were to get her into remission, but rather to get her disease under management. This wasn’t going away, and it would take about 12-18 months until we knew what medications would really work on her disease.

Study Your Opponent

Crohn’s presents in a variety of symptoms, and we had to figure out which of those symptoms Susie’s disease would manifest so we could treat her in the best way possible. As a parent, you will scare yourself to death if you believe everything you read on the internet. Find what Web sites your doctors recommend, and do your research carefully. We recommend CCFA’s Website or Mayo Clinic. I’m the one who had to sign the permission forms for medical procedures, for drug infusions, for grey-box and black-box drugs that would go into my child. I took and still take this job very seriously. Its part of being a “Crohns Mom.”

Flexibility

As I waited in Outpatient Surgery for my 13 year old daughter to come back after the colonoscopy that would confirm the diagnosis of Crohn’s Disease, her doctor came in to visit with me. She was direct, confident and (looking back) positive. These were words she had said to many other parents and they were perfect and true: she told me that the most important word in my vocabulary would now be “flexibility.”

Shirtless hot guy yoga

I personally take my flexibility very seriously.

Dr. S. told me that we would need to be flexible. We would need to make changes to many aspects of our lives, but we should certainly continue to live life and enjoy it. She told me to buy only refundable airline tickets, to make sure we bought trip insurance, to do my homework on the availability of medical care wherever we and/or Susie might go on vacation. (SuzNote: When I lived in Jamaica for a month, and when I went to Europe with school, we always made sure that I had MedJet Assist ready to go, just in case). She did not tell us to stop living our lives or stop Susie from living hers, rather she told me we would need to approach our lives in a different way. Remember that great motto?– “Be Prepared”– yeah, don’t forget that!

Helping Susie Live, but Letting her Fight her Fight

So, my first task after receiving the diagnosis was to acknowledge that this disease would be hard for Susie to deal with and the first thing I needed to do was to make sure that she knew that I accepted her exactly like she was. She was the same Susie that she had been before the monster had a name.

baby suz and chris halloween

Not the monster, just her brother, Chris.

Susie did not want to be a victim of this disease, so I made sure that she wasn’t treated as one. She wanted others to see her as a kid—- with blonde hair, who loved horses, dogs, was very smart and…..oh, by the way, had Crohn’s Disease. (fine print of life, not the title header). That was very important to her– that her illness would not define her as a person. Crohns may play a major role in her life, but she lives with it, not in spite of it.

marathon training chronic condition crohns suzlyfe

As a mom, my most important jobs were to accept my child as she was, to help her to accept herself, to teach her how to read her body and when to act if she thought she was in trouble. I also needed to teach her to be her own advocate–to stand up for what she needed and not to be afraid to speak up.

Communication

As part of that day where her innocence ended and her adulthood began, I made a promise to Susie that I would not lie to her. I would answer any question that she asked me–about anything. In turn, she needed to promise not to lie to me when I asked how she felt, how her pain levels, were, etc. I needed the truth, as I could adjust some of her meds based on her answers or call her doctors as we flew through Atlanta traffic on our way to their office. I also learned to read her every expression, grimace, slight change of skin color. The disease may have been hers, but this was on my watch…….it always will be.

Getting the Team in Place

One of the nicer parts of having an actual diagnosis was that Susie now had a Pediatric GI doctor in a Pediatric GI practice where the entire medical staff knew what to ask and how to answer questions from panicked parents. The ability to Triage-by-Phone was a godsend. I called almost every day for months!

remicade

I sent an email to her teachers at school telling them that this was what she had, how to deal with an emergency, and to please allow Susie to leave the classroom without permission should she need to be excused. Crohn’s doesn’t give you a lot of time when it decides to “act.”  I did this each year that she was in junior high and high school. When she started looking at colleges, my one request was that she let me know which schools she was considering so that I could find the closest appropriate medical support she would need.  Once she decided on her choice, she contacted the Special Needs Student Services support group and she was able to secure the accommodations that would meet her needs.

YOU Can’t Live YOUR Life in Fear, Either

But perhaps just as important as all of the medical aspects of life with a chronic illness, she still needed to be able to play, and so did we! There will be times when you won’t be able to leave your child’s side out of your own fear and need. I also had to remind myself that Susie had a brother and a dad and that they needed support and help in dealing with this new hand that we had all been dealt. This was our life now, our new normal. We all had to adjust to the changes that this “diagnosis” brought to our lives. Please give yourselves some time–to adjust, to react, to do research, to cry and yell (alone in your car, is always a good spot!) and then to regroup and do the everyday things like take the dog to the vets and buy milk.

mom me mcm marathon suzlyfe

This is not a sprint, it is a marathon— so train wisely, keep yourself well nourished and looked after. You are the one who will set the tone for the rest of your family–savor the good things, eat dessert first and enjoy life–live it everyday! This was her reality and it was now ours, as a family. She would never be alone in this–we loved her just as she was, and we were all in this together. As Chris Cooper said in the legendary movie, Seabiscuit, “You don’t have to be perfect to be just fine.”

 not-perfect-fine-seabiscuit-crohns-disease-suz

Have you ever dealt with a life-changing moment as the support system? How did you deal with it?

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91 Comments

  • Reply Run Colby run

    Well bless your heart, Susie’s Mom! Such a wonderfully important post. And much needed!!! You’re daughter is something else. I’m quite certain in “Real Lyfe” we would be real friends. (Not is a creepy Single White Female way— genuinely πŸ™‚ ). I can see where she gets it from. The focus is certainly on your child, but your post is so important for families and caregivers dealing with a diagnosis- especially at a young age. As someone with a nephew who is in a wheelchair, watching my sister and family trying to navigate a condition is a tough thing. The illness is troubling enough, handling it can be even more so without proper resources and support. Such an important piece Mrs. Suze’s Mom! πŸ™‚
    Run Colby run recently posted…The Boston Marathon: A Recap in Pictures.My Profile

    May 5, 2015 at 6:09 am
    • Reply suzlyfe

      A) we totally would be/are friends, so don’t even question that. B) Dealing with a wheelchair situation is troubling in another way as well–I appear “normal” to the world, whilst he will “not,” regardless of how incredible a person he is (which I have no doubt of, as he is related to you). Watching the world react to your child cannot be easy, either.

      May 5, 2015 at 3:12 pm
  • Reply Heather @Fit n Cookies

    Your mom. I love her. Seriously could she had written a better post?! I loved she touched on fear. It’s ok to be fearful of what’s to come, but to step back and find new things that you can do. She is so amazing to do everything she has done for you, and is still there for you! You rock Mama Suz!
    Heather @Fit n Cookies recently posted…Pittsburgh Half Marathon 2015 RecapMy Profile

    May 5, 2015 at 6:13 am
    • Reply suzlyfe

      Couldn’t have said it better myself! YOU ROCK MOM

      May 5, 2015 at 3:10 pm
  • Reply Stacie @ SimplySouthernStacie

    Mama Suz may just be my favorite person ever at this moment! You are seriously so blessed with an amazing support system, Susie! And it’s incredibly easy for me to see where you get your amazing strength and personality from!
    Stacie @ SimplySouthernStacie recently posted…Weekend Recap: First Time for EverythingMy Profile

    May 5, 2015 at 6:25 am
    • Reply suzlyfe

      It’s allowed–she’s kind of one of my favorite people, too. I never forget how lucky I am.

      May 5, 2015 at 3:09 pm
  • Reply carissajaded

    Ah Susie, Your mom is the best! Thank you so much for this! I think it’s great to remind parents that they have the ability to make a tough situation better, and that support really makes a huge difference. Thanks to you both for being so strong and open and positive! HUGS! Happy Mama’s Day!
    carissajaded recently posted…Why I Can’t Wait to Get Old (Or Maybe I’m Trying to Make Myself Feel Better)My Profile

    May 5, 2015 at 6:29 am
    • Reply suzlyfe

      Now you know where I get some of my carpe this fucking diem from!

      May 5, 2015 at 3:07 pm
  • Reply Annmarie

    Your mom seriously rocks! I cannot imagine being in her position but if I ever am I hope to be as awesome and supportive as her!
    Annmarie recently posted…5 Gluten Free Avocado Recipes for Cinco de MayoMy Profile

    May 5, 2015 at 6:33 am
    • Reply suzlyfe

      I have no doubt that you would. But I certainly hope that you don’t!

      May 5, 2015 at 3:07 pm
  • Reply Erica @ Erica Finds

    Wow! Mama Clare- thank you for this amazing post. I am in awe of your spirit and no-nonsense nature. Now I know where Susie gets it!
    Erica @ Erica Finds recently posted…Tried It Tuesday: dailyServingMy Profile

    May 5, 2015 at 6:36 am
    • Reply suzlyfe

      I would love to get the two of you together πŸ˜€

      May 5, 2015 at 3:06 pm
      • Reply Suzlyfe's mommy, Clare

        we’d have so much fun!!

        May 5, 2015 at 3:27 pm
  • Reply Marcia

    This was so sweet to read. Suz you have the BEST mom and support system! I totally get the fear. And the need to face it down and live and PLAY IN SPITE of it. This is all kinds of awesome right here.
    Marcia recently posted…#NOWgetfit Immersion and GiveawayMy Profile

    May 5, 2015 at 6:36 am
    • Reply suzlyfe

      She is #alltheawesome. I really did have it the best possible way.

      May 5, 2015 at 3:06 pm
  • Reply Julie @ Running in a Skirt

    Mama Suz is amazing! You are one lucky girl πŸ™‚
    Julie @ Running in a Skirt recently posted…Black Bean & Avocado QuesadillaMy Profile

    May 5, 2015 at 6:56 am
    • Reply suzlyfe

      Don’t I know it–and I never forget it!

      May 5, 2015 at 3:04 pm
  • Reply Lisa @ Running Out Of Wine

    This is wonderful! I am sure it is not easy on either end, but you have both persevered and shown that you are stronger than Crohns. These are some great words of wisdom for others in a similar situation!

    May 5, 2015 at 7:41 am
    • Reply suzlyfe

      I’m honestly not sure which of us had it worse. I had the physical pain, but she had to watch.

      May 5, 2015 at 3:04 pm
      • Reply Suzlyfe's mommy, Clare

        What a good question and not an easy one to answer–not an easy one to answer–at all.

        Hm…….you were in physical pain and that was horrid. I couldn’t fix it and that was sometimes horrid-er. I knew what was happening and I couldn’t do anything to make it better except be there, quietly have faith, and hope the pain-killers would work quickly.
        There were shots of pain-killers that could put you under for awhile, and some pain meds, but mom-pain (parent-pain) is something that I can’t describe. It comes from a primitive, feral, guttural level that you will only know when you are a parent.
        The knowledge that I would not hesitate to kill to protect you, just NOT hesitate–and yet there was nothing I could do to make your pain go away.

        But there were also funny, wonderful times–it wasn’t always horrid. We created fun wherever we were, we still do!

        May 5, 2015 at 3:44 pm
  • Reply Erin@BeetsPerMinute

    First off, your mom is awesome and what a great idea to let her share her side of this with your readers! I felt particularly touched by this, in a reverse way. As I’ve mentioned before, my father passed away from colon cancer in 2011 and everything your mom was saying about support in terms of it being your fight, is exactly how I approached my father’s illness and his fight. I was a caregiver for him during his diagnosis, treatment, and right through to hospice, but I knew how important it was for him to know he was still my dad and that the illness wasn’t going to change anything about that. It’s so hard to separate the emotions — wanting to coddle, but not wanting to make the person seem changed or defined by their illness — with wanting to help and support. It’s not hard to see why you’re such a strong person and such a source of inspiration and support for others having such a strong mom to guide you through this journey. Thank you for sharing her wisdom and experience! <3
    Erin@BeetsPerMinute recently posted…Abroad City : An American Living in Glasgow #1My Profile

    May 5, 2015 at 7:54 am
    • Reply suzlyfe

      Oh Erin, thank YOU for sharing this as well! I think that you did the most incredible thing: caretaking but letting him know that he was STILL YOUR DAD. You are pretty damn strong yourself.

      May 5, 2015 at 3:04 pm
  • Reply Laura @ This Runner's Recipes

    Your mom is amazing! Moms are seriously the best and provide such an invaluable support system, no matter what the issue. It’s so inspiring how your mom approached your Crohn’s in such a caring, honest, and nurturing way that both helped you and gave you room to fight your own fight.
    Laura @ This Runner’s Recipes recently posted…Would You Rather Running SurveyMy Profile

    May 5, 2015 at 8:16 am
    • Reply suzlyfe

      I can’t imagine how she found the space within herself and our lives for it. She is one the most incredible women I’ve ever known.

      May 5, 2015 at 3:02 pm
  • Reply Rachel

    I love this post. As you know, my brother has Crohn’s and I never really considered what my parents went through before his diagnosis — before the monster had a name. You have an amazing mama.
    Rachel recently posted…Marathon Training Recap: Week 16My Profile

    May 5, 2015 at 8:16 am
    • Reply suzlyfe

      I know it. I sometimes wish my brother would speak up a bit more about what it was like for him. I know it wasn’t easy–that feeling of helplessness gets to us all.

      May 5, 2015 at 3:00 pm
  • Reply Gretchen | Gretchruns

    Umm your mom is the best, seriously! This was such a great post and I think could be useful if you’re helping anyone get through a tough situation. Thank goodness you had her as your support! I’m also thinking she should start her own blog… just saying πŸ™‚
    Gretchen | Gretchruns recently posted…Tuesdays on the Run : Best Race EverMy Profile

    May 5, 2015 at 8:16 am
    • Reply suzlyfe

      Don’t encourage her, lol. She writes on her own–boy, lady has so many stories she makes me seem quiet!

      May 5, 2015 at 2:58 pm
  • Reply Mattie @ Comfy & Confident

    this is so moving! I love reading it from your mom’s perspective. It is not an easy thing for anyone to deal with, but I am sure mom’s take it incredibly hard. I am so happy you two are running this marathon together.

    May 5, 2015 at 8:19 am
    • Reply suzlyfe

      Me, too. I wouldn’t want to run it with anyone else!

      May 5, 2015 at 2:57 pm
  • Reply Jamie

    I absolutely love this. I sent this article to my mom haha. I was not diagnosed until I was 26, and I think because of the late diagnosis, my mom and other loved ones, were so confused as to what was going on/how to help. Please tell Mamma Suzlyfe thank you! πŸ™‚
    Jamie recently posted…Weekend Wrap UpMy Profile

    May 5, 2015 at 8:38 am
    • Reply suzlyfe

      And please tell your parents that if they ever need to talk, she’s around–and same to you–you know where to find me!

      May 5, 2015 at 2:57 pm
      • Reply Sulfyfe's mommy, Clare

        No one could make you seem quiet……..if you were,I’d have to slap you with a wet noodle!

        May 5, 2015 at 9:11 pm
      • Reply Sulfyfe's mommy, Clare

        Susie is right, please let her know if I can help you or your parents in any way.

        May 5, 2015 at 9:13 pm
  • Reply Sarah

    What a sweet post and so wonderful. I think this sums up just perfectly how amazing parents are an especially in times of need. As I have met so many families through the MDA I have found that when things don’t seem right and help is needed moms are the first to step into action. They want a plan and from there they do what is needed. What a great post!
    Sarah recently posted…A Lovely Spring Or Maybe Summer WeekendMy Profile

    May 5, 2015 at 8:46 am
    • Reply suzlyfe

      I know that you have seen similar situations through MDA–there is just nothing like the strength of a mother.

      May 5, 2015 at 2:56 pm
  • Reply Rae

    Wonderful post from a wonderful mommy!
    Rae recently posted…Race Recap: GMAA Pump it Up 5 MilerMy Profile

    May 5, 2015 at 8:51 am
    • Reply suzlyfe

      You said it!

      May 5, 2015 at 2:55 pm
  • Reply Erin @ Erin's Inside Job

    Aw so great. It’s nice to have the other perspective!
    Erin @ Erin’s Inside Job recently posted…Fresha Place With Daiya For DessertMy Profile

    May 5, 2015 at 8:54 am
    • Reply suzlyfe

      She’s pretty amazeballs, right?

      May 5, 2015 at 2:55 pm
  • Reply Suzy

    Thank you, Clare! You are a wise woman, and Susie is fortunate to have you as her support system. Yes, I’ve been a caregiver my whole life (without saying anything too personal about people on here… I have to be evasive) and I remember feeling turned inside out with the demands of caring for others and not myself until I read a research article on how caregivers often die of secondary illnesses before their sick spouse/child/whoever does. And that was just a huge wake-up call for me, not to stop caring, but to start caring for myself too. It is very easy to get lost in the disease. It’s so cool that you not only cared for Susie but that you empowered her and cared for yourself. THAT is the sign of two strong, healthy women. You guys are amazing.
    Suzy recently posted…Boom.My Profile

    May 5, 2015 at 9:09 am
    • Reply suzlyfe

      You can’t lose yourself in the middle of all of it. Now that I am on the other side of the struggle (well, at the moment), I am my mom’s biggest fighter for her to fight for herself. I can’t fight her fight, either, but I can help her believe in herself.

      May 5, 2015 at 2:55 pm
  • Reply Maddie @ Dixie Runs

    What an awesome, supportive mommy you have!! I love that these lessons can be applied to so many different situations… being supportive isn’t always hand holding, but is being emotionally strong enough to be there for that person when they need it most. Great post!!
    Maddie @ Dixie Runs recently posted…Dixie Goes Running & What I’ve Learned So FarMy Profile

    May 5, 2015 at 9:10 am
    • Reply suzlyfe

      She freaking rocks, doesn’t she??

      May 5, 2015 at 2:53 pm
  • Reply Salt

    Clare, you are spectacular. And you have a spectacular daughter. Thank you so much for sharing this post with us!! I wish I could hug you both!
    Salt recently posted…New Jersey Marathon Recap Part 2: The Race!My Profile

    May 5, 2015 at 9:50 am
    • Reply suzlyfe

      One day you will!

      May 5, 2015 at 2:52 pm
  • Reply Suzlyfe's mommy, Clare

    Thank you so much for all of your comments! …..and to Suze, thank you for asking me to speak up–I tend to do that whether asked or not………… but its nice to be able to share this.

    My mom was diagnosed with of colon cancer when I was 20. She died when I was 26 and she was 62. We were not allowed to be with her during the “difficult” aspects of managing her disease. She’d had an irreversible colostomy and her door was closed when she dealt with “things.” Her support system included my dad, and two of her closest friends.
    We, as her family, did not have a support system–at all. That idea hadn’t come into common verbiage. We asked questions, and received vague responses before the subject was changed. It was private. As Mammy in “Gone with the Wind” would have said “it ain’t fittin, it just ain’t fittin.”

    The internet was not in existence, and the materials in the libraries were either 20 years out of date, or restricted to medical personnel only. We knew what had been done during her surgery, and that was about all the information that was shared at all. Mom didn’t want us to worry, she wanted us to just live our lives.
    You never questioned a doctor and certainly not someone else’s doctor. They were all-knowing—as I recall her doctor did look a bit like the Wizard of Oz….short, bald all-knowing and aloof.

    When you child (husband, parent, partner, best friend) gets sick, really sick, you need someone to turn to- for your own support. The caregiver needs caregivers, too, and they need answers to tough questions. I asked tough ones and kept asking until I found answers. I didn’t necessarily like the answers, but those answers gave ME something to work with.

    ASK questions, and demand answers but realize that many of the answers may change over time.
    These chronic illnesses are not one-trick ponies, they are galloping herds–you just want to be running with them, not against them.
    Clare

    May 5, 2015 at 9:51 am
    • Reply suzlyfe

      I say this every time, but everything that is good in me–it’s from you. You are the reason that I made it through. I love you so, so much.

      May 5, 2015 at 2:52 pm
  • Reply Jill

    Oh I love your mommy. I’m sure being a parent and being told anything is wrong with your child has got to be incredibly heartbreaking. Somehow moms are able to muster the strength needed for their children. It’s incredible. So glad you have her in your corner Suze!!
    Jill recently posted…How Did I Not Know About This, and Other RandomnessMy Profile

    May 5, 2015 at 10:25 am
    • Reply suzlyfe

      I’ve now said this so many times, but I don’t know how she did it. I really don’t.

      May 5, 2015 at 2:50 pm
  • Reply Courtney @ Eat Pray Run DC

    clare – way to go. what a rock star you are! moms are truly the best and i know this will help so many folks out there πŸ™‚
    Courtney @ Eat Pray Run DC recently posted…How to Still Love Blogging After the Honeymoon EndsMy Profile

    May 5, 2015 at 11:01 am
    • Reply suzlyfe

      Isn’t she incredible? I don’t know how I got so lucky!

      May 5, 2015 at 2:49 pm
  • Reply Pragati // Simple Medicine

    Confession: I always read Momma Clare’s comments because I find them to be so sweet, soothing and insightful. Your mommy is awesome. I can totally see how you came to be such a remarkable young woman. I really enjoyed hearing your mom’s side of the story. As the person who is the support system, I needed this! We just got some news that has been hard to hear and I’m doing my best to be supportive in every way I can. Thank you times a million.
    Pragati // Simple Medicine recently posted…Hemp Milk HorchataMy Profile

    May 5, 2015 at 11:09 am
    • Reply suzlyfe

      Haha, I know that a lot of people do–I love it. She is awesome, and you are so sweet to say that about her and me. I am sorry to hear that you got some rough news–but know that if you go forward together, you can take it.

      May 5, 2015 at 2:48 pm
    • Reply Sulfyfe's mommy, Clare

      Please let Susie know if you need me-I’d love to be there for you if need an impartial nonrelative.

      May 5, 2015 at 9:34 pm
  • Reply Michele

    I go through denial and fear every time one of my kids gets sick, even with something small! I can relate to this somewhat as a parent since my 2 daughters have scoliosis and one had surgery at a young age. As a parent, managing emotions when your child is ill is so tough, I think I need to bookmark this as a reminder and for inspiration going down the road. Great post πŸ™‚
    Michele recently posted…My Running Comebacks Over 10 YearsMy Profile

    May 5, 2015 at 11:38 am
    • Reply suzlyfe

      Please do–and know that you can handle anything, as long as you approach it as a family.

      May 5, 2015 at 2:47 pm
  • Reply Carmy

    Hello Mama Bear! This is an amazing post. Having a strong support system is important in all aspects of life and I’m so happy Suz isn’t alone in this. xo x1000000 <3
    Carmy recently posted…May GoalsMy Profile

    May 5, 2015 at 12:20 pm
    • Reply suzlyfe

      I could never be alone with her in my life ( and now with Alex, too). But I wouldn’t be who I was without her, either.

      May 5, 2015 at 2:46 pm
  • Reply Jess @hellotofit

    Okay. I want to go on a lunch date, to Pippin Hill, with you and your mom. I really enjoyed reading this post, and loved seeing what it’s like from her perspective.
    Jess @hellotofit recently posted…Link Love #16 and more cupcakesMy Profile

    May 5, 2015 at 12:24 pm
    • Reply suzlyfe

      Thank you, Jess, and I hope that one day we might be able to take you up on that!

      May 5, 2015 at 2:40 pm
  • Reply Deborah @ Confessions of a Mother Runner

    Seriously your mom is amazing! That’s all amazing! As a mom I cannot even imagine how or if I could handle something like this. Her wisdom of having gone through it and both of you doing so amazingly well is inspiring to read. Hugs to Suz’s mom!
    Deborah @ Confessions of a Mother Runner recently posted…Black Bean & Spinach Tortilla Pie-Cinco de MayoMy Profile

    May 5, 2015 at 12:43 pm
    • Reply suzlyfe

      So often, I don’t know how she did it. Not only raising me (and all that comes along with it), but watch me go through what I did. It honestly terrifies me for the future–what if I have a child with the same issues?

      May 5, 2015 at 2:40 pm
      • Reply Sulfyfe's mommy, Clare

        If you do—–I will be there—–always

        May 5, 2015 at 9:16 pm
  • Reply Ang @ Nutty for Life

    Such a great informative and loving perspective. It’s so interesting to read this from a mother’s point of view because having a child with an illness, disability, etc. is totally life-changing and not at all what a mom expects going into motherhood (or so I’ve heard). Clearly you’ve done a great job making the best of everything though! I can tell she’s so proud.
    Ang @ Nutty for Life recently posted…Peanut Butter Zucchini SmoothieMy Profile

    May 5, 2015 at 12:58 pm
    • Reply suzlyfe

      I hope that I’ve made her proud–it is one of the only things I can say is truly a goal of my life. I can’t imagine going through what she went through–I don’t know which is worse.

      May 5, 2015 at 2:39 pm
  • Reply Sam @ PancakeWarriors

    Wow this really gave such insight on how strong your support system is Suz!! Your mom sounds amazing – and very level headed. I loev that she promised you to be honest and made you promise back – that she knew you would need that level of honesty at such a young age. I can’t imagine how scared/frustrated/upset she was but it seems like the way she dealt with this made you all a stronger family!!
    Sam @ PancakeWarriors recently posted…Homemade Greek DressingMy Profile

    May 5, 2015 at 1:33 pm
    • Reply suzlyfe

      I always say that everything good in me is from her–and now you know where I got my strength from in dealing with this whole thang!

      May 5, 2015 at 2:38 pm
  • Reply Kaella (KaellaOnTheRun)

    I love that your mom wrote this! My mom still can’t talk about when I was diagnosed with Crohn’s disease without tearing up. I lived 20 hours away and they told me I had Bladder Cancer. She was on the next plane to see me into surgery. Thankfully, it ended up not being cancer. Crohn’s Disease was something we were both familiar with (my Nana had passed away from complication from UC 5 years earlier.)

    She’s always been my biggest cheerleader and I’m thankful to have a great support system now!

    Oh, and her line about fear is spot on!! My mom always told me “nervousness is just excitement put in the wrong place.” I’ll have to remember hers too!
    Kaella (KaellaOnTheRun) recently posted…Training Tuesday- 25 Days Until The Calgary MarathonMy Profile

    May 5, 2015 at 1:48 pm
    • Reply suzlyfe

      They told you that you had cancer?? Incredible. Mom’s are truly unbelievable. Look at you being separated for the first time from London for the weekend. It is one of the aspects of being a mom that I am most anticipating and also pretty terrified of–just to love someone that much.

      May 5, 2015 at 2:37 pm
  • Reply Ange @ Cowgirl Runs

    What a wonderfully sweet post from your mom.
    Excuse, me, I think I have something in my eye…
    Ange @ Cowgirl Runs recently posted…My Top 5 PodcastsMy Profile

    May 5, 2015 at 5:17 pm
    • Reply suzlyfe

      It’s just allergies. Or you were cutting an onion.

      May 6, 2015 at 12:35 pm
  • Reply Anna @ Piper's Run

    Wow, Mama Clare – as a parents of two little ones I feel this post is something I could take and insert many situations that could arise over the time you are raising your children. Thanks for sharing your side of things and reassuring us parents that it’s all going to be okay.
    Suze….I see where you get your smarts and great attitude!
    Anna @ Piper’s Run recently posted…The Pressure is Off.My Profile

    May 5, 2015 at 6:06 pm
    • Reply suzlyfe

      Thank you! I hope I am able to let her shine through!

      May 6, 2015 at 12:36 pm
  • Reply Farrah

    Ahhh! HELLO, SUSIE’S MOM! :] You are an amazing human being!

    I love all the points you touched on, and I so wish I’d known all this earlier, when I was trying to be a good support system for my family. This was such a beautiful and wonderful post, and contains such a wealth of information that I feel is a perspective you can only really get from a fantastic parent. You’re such an awesome inspiration + support to Susie; I can definitely get where her awesomeness comes from! :]
    Farrah recently posted…Review: The No More Excuses DietMy Profile

    May 5, 2015 at 6:36 pm
    • Reply suzlyfe

      #igetitfrommymama

      May 6, 2015 at 12:36 pm
  • Reply Bri

    Love this, Susie. What a wonderful, amazing and supportive mom you have – she really did everything to help make you the awesome person you are today despite your diagnosis. This is such a great resource for parents going through the same thing!
    Bri recently posted…15 simple steps to help start your weight-loss journeyMy Profile

    May 5, 2015 at 7:45 pm
    • Reply suzlyfe

      She set me up for success–so many people questioned why she didn’t coddle me. She gave me just enough room, though, and let me be me despite everything going on.

      May 6, 2015 at 12:37 pm
  • Reply Danielle@T-Rex Runner

    This was really, really great. Well done, Suz’s mom! I see where she gets her great writing skills from, too πŸ™‚
    Danielle@T-Rex Runner recently posted…Step by StepMy Profile

    May 5, 2015 at 8:24 pm
    • Reply suzlyfe

      Awwww blushing. You can also tell where I get my loquaciousness from, too!

      May 6, 2015 at 12:37 pm
  • Reply Sara @ lifebetweenthemiles

    Your Mom….AMAZING! I clearly knew this from all her comments on your posts, but man, this was a tear jerker. I love how supportive she is but also that she let you ‘own” your disease as well, which I think is so important (vs. babying you and doing everything FOR you instead of WITH you) Her love and respect for you shines through so clearly, and its beautiful! <3

    May 6, 2015 at 10:13 am
    • Reply suzlyfe

      I am so, so lucky–but I so see that in you, too–you are balancing so much, but you still make such a point to be with Ash in ways that help him develop as a person.

      May 6, 2015 at 12:38 pm
  • Reply Beth @ Running with the Sunrise

    Beautiful post, Clare! Thanks for sharing what you went through–I’m sure it will be really helpful for other parents/loved ones of those with Crohn’s Disease. I’m glad that Susie had such a wonderful and supportive family to help her deal with her diagnosis. I’ve been very lucky to not have any family diagnosed with such a tough chronic disease–the closest thing my family has had to deal with is heart disease and diabetes, which primarily require living a healthy lifestyle and focusing on exercise and eating good foods.
    Beth @ Running with the Sunrise recently posted…Wordless Wednesday, May 6, 2015My Profile

    May 6, 2015 at 11:20 am
    • Reply suzlyfe

      I definitely have it very well, despite the health issues–I have everything I need in my mom and my family. I really am so very lucky!

      May 6, 2015 at 12:39 pm
  • Reply Courtney @ Running For Cupcakes

    Your mom is amazing!! She is actually more than amazing, she is a word that doesn’t even exist! This post is going to help so many people out there and it will speak to anyone who has a child or someone close to them who needs a support system, regardless of if it is Crohn’s or something different. Truly amazing.
    Courtney @ Running For Cupcakes recently posted…Go-Karts & Laser Tag & Soccer Oh My!My Profile

    May 6, 2015 at 11:46 am
    • Reply suzlyfe

      I know–if you think of a proper word to describe her, please let me know! I’ve been trying to come up with one for years!

      May 6, 2015 at 12:39 pm
    • Reply Suzlyfe's mommy, Clare

      Now THAT would require multiple posts….or its own blog!!!

      May 7, 2015 at 9:32 am
  • Reply Linda @ Veganosity

    This is so beautifully written, I can feel the love and strength you give to each other. As the mother of two kids who I love more than life itself, I can only imagine how that diagnosis must have felt. Bravo to your entire family for not letting the disease define who you are.

    May 6, 2015 at 4:12 pm
    • Reply suzlyfe

      Thank you, Linda. And now you know why I was so drawn to you to discuss your bond with your own daughter!

      May 7, 2015 at 2:04 pm
  • Reply neil@neilshealthymeals.com

    I loved this “guest” post from your mom Susie! Whoop Whoop Susie’s mom! πŸ˜€

    Just tell her from me that she has an incredibly awesome daughter, who not only inspires so many people that read your blog, but also, for those of us who had very little knowledge in the condition, diagnosis and treatment of Crohn’s Disease have now been enlightened and educated. with the facts. Well that’s certainly true in my case anyway.

    We should have more! Let’s have a post from your mom about all the times you were naughty as a child (like there were any I know πŸ˜‰ )
    neil@neilshealthymeals.com recently posted…Blueberry Apple SmoothieMy Profile

    May 6, 2015 at 11:26 pm
    • Reply suzlyfe

      I actually have been planning that post for a bit, but I’m glad that she started with this one πŸ˜€ Now the crazy can be unleashed.

      May 7, 2015 at 2:04 pm

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