Being in control. Knowing what tomorrow brings. Understanding why. Unfortunately, when it comes to inflammatory bowel disease, we don’t have those abilities or those answers. This week, a guest blog from a California mom of six girls named Cait. Her 13-year-old daughter, Natalie, was recently diagnosed with Crohn’s disease. I connected with Cait on Instagram and look up to her as a mom who’s trying to navigate her daughter and her family’s new normal.

As a mom, I always want to have the answer or know just the right thing to do to help my kids along their own path. So, when all of that seemed to crash around us in May I felt lost. I felt alone. I didn’t know which way was up. This wasn’t in my plan nor did I wish for Natalie to journey it.

But here we were. Months and months of tests and researching late at night on my phone. Was it a tummy bug? Was it a parasite? Was it a food allergy surfacing? Mono? So many questions and not enough answers. The one test we all felt Natalie needed, our insurance denied us.

We could not keep watching our precious daughter fade. Something was terribly wrong. When we saw her doctor one last time in hopes of finally knowing a reason, it was still unclear and we all decided it was best to go to the Children’s hospital so this could finally be resolved. 

Long nights, early mornings, no sleep, tests after tests and the same questions asked over and over again. It was exhausting. I have never felt so helpless. I tried to stay strong, encouraging her, supporting her, talking to the doctors and being by her side while my husband and both sides of our families cared for our five other daughters. Our family came to visit as much as possible, but the drive was far. I sat alone with Natalie when she went for her first scope. I sat alone with the doctor and received the awful news. But I was somehow relieved in those early moments. We finally had a name for what we were dealing with. Crohn’s disease. We now had a team of people who wanted to help us manage and get her disease under control. Such relief to no longer feel alone.

There have been hard days, and really hard days and then days it seems nothing ever really happened. And although we are so new to all of this, there are some things I have been learning along the way. 

It’s ok to cry with them. They need to know they are not alone. I tried to stay strong, but being able to weep with her was soothing for both of us.

Keep the lines of communication open even when they are hurting and may say they don’t. Those thoughts and emotions have to be worked through. This is a tough diagnosis.

Find ways to laugh. In the hospital everything was so depressing for us. So when we got the results we made a Snapchat video to share it with everyone. Somehow it lightened the mood and helped us embrace our new reality. 

Soak up these moments of bonding even though we all know we would rather bond over coffee dates and shopping trips and not hospital stays and long trips to see her specialist.

Do research and don’t be afraid to go with your gut (no pun intended). You know your son/daughter better than anyone else. Respect the doctors, but don’t be afraid to ask questions and have a voice in their treatment. You are your child’s best advocate.

My biggest encouragement is this, stop looking back. As a mom I want to turn back time. I want to fix it somehow. I want to change it all. Looking back only brings unnecessary guilt, sadness and regret.

Look forward. Find things to be thankful for. Do your best to give them the brightest future and speak life over them. Cherish every moment. And help them plan their future–which can be as bright as any other child.

To follow Cait and her family’s journey, check out her blog.

 

My little guy Reid turned six months old on September 29^th. Everyone always says how quickly time goes, but until it’s your reality…you don’t realize what a blur everything becomes. These past six months I’ve had the fear of a postpartum flare looming overhead. Wondering when my disease was going to re-surface with a vengeance. Luckily, despite having a few rough patches…I managed to stay out of the hospital and keep things under control on my own. 

I’ll be the first to admit, mom guilt is real. It’s especially real when you’re grappling with a chronic condition like Crohn’s disease. Wishing you had more energy to keep up around the house, wondering how you’re going to play re-do the following days, weeks and years ahead. There are days and moments that push you and the struggle doesn’t get any easier when you have to care for more than just yourself. Sometimes it can feel like an uphill battle. Other days you feel like you can conquer the world. I wish I could bottle up those fleeting feelings of invincibility and use them when I need them most. Because just like when you’re diagnosed with Crohn’s… it’s a part of you for the rest of your life, and so is motherhood.

Here are six helpful tips for conquering motherhood with inflammatory bowel disease:

1. Get as much rest as possible

You know the advice you hear all the time “sleep when the baby sleeps”… pretty sure I actually only followed that rule of thumb a few times. But really, try and get as much shut-eye as possible. Especially after that early 3-4 am feeding. If you wake up again at 6 am you’ll at least feel like you’re just getting up for work or something! Work with your significant other to rotate who is getting up in the middle of the night and try to at least lay down, even if you’re not tired. My husband is always great about letting me “sleep in” on the weekends since I am the main caretaker all week. We all know IBD is a fatiguing illness as it is. The last thing you need is to couple that with utter and complete exhaustion.

2. Keep all your doctor appointments and wellness visits

Once you become a mom you quickly realize that your needs drop to the bottom of the totem pole. It’s imperative you don’t let your efforts to manage your illness go by the wayside. Even when you’re delirious, take your medications and go to your doctor appointments. I scheduled everything from my GI visits to bloodwork around times I could have a sitter. I didn’t want to bring my son around the germs of a hospital or a doctor’s office (other than the pediatrician) before he was six months old. You’ll also want to attend those appointments by yourself or with a loved one or a friend, so you can listen and focus.

3. When you have to go, GO.

One of the hardest things for me has been feeling the need to use the bathroom while feeding my son. I never want to interrupt his feeding or take the bottle away. Generally, when I do that he’s not the happiest with me. But you know what, the baby will survive if you need to take a five minute TV time-out and make a mad dash to the bathroom. In these past six months, I’ve carried Reid in the Rock N’Play and fed him from the door of the bathroom hunched over on the toilet on multiple occasions. How’s that for a visual, folks? Mom goals, right?!

4. Schedule a massage…or two

Ladies, I don’t know about you…but one of my biggest “complaints” during pregnancy and after my c-section was back pain. I’ve had two professional massages at the spa since Reid was born and they have done wonders to relieve the stress. Massage and meditation is also beneficial when it comes to keeping stress levels low. For me, stress is my main disease trigger. I know massages can break the bank, so ask for gift cards around the holidays, for Mother’s Day or your birthday. It’s the best treat.

5. Be mindful of what you eat and drink

Oftentimes the days are flying by so fast and you’re so focused on caring for your little one that you look at the clock and realize you forgot to eat the last few meals. For me, I constantly forget lunch. Don’t skimp on nutrition or eat foods that you know will trigger a negative response in your body. Try and meal plan and go grocery shopping on a Sunday so you have food readily available in your kitchen. Make enough for leftovers so you’re covered for lunch.

6. Don’t be afraid to ask for help

This is much easier said than done, and I know I struggle with speaking up. But we must. Being a mom is a full-time job in and of itself and then some. It’s the most amazing and the most difficult role you’ll ever get to experience. Know that you have a tribe of loved ones—family members and friends who are on the sidelines just waiting to sneak in and get some snuggle time with your little one. Take them up on it. You need time for you. You need a break to clear your head. Just ask—even if it’s only for an hour, speak up and you won’t be disappointed.

As far as postpartum flares I am thrilled that I’ve made it Reid’s entire life without needing to make an emergency trip to the hospital. (knock on wood!) I was also told by my pediatrician that Reid would no longer have the remnants of Humira in his system once he hit this milestone. We kept a bit of a low-profile these past six months since Humira is an immune suppressant. Reid couldn’t be healthier. Still hasn’t had a cold yet, so I chalk that up to success! It’s amazing how great it feels to just get outside and take a walk, soak in the fresh air and that time with your baby.

When you have a little human who depends on you for everything, it’s easy to put your own self-care and disease management to the wayside. But the funny thing is—we can’t be good mamas if we’re not healthy. So, take that time for yourself. Give yourself time to get into a groove and a routine that works best for you. Then one day, whether you’re holding your baby or just changing a diaper you’ll feel this empowering epiphany come over you and you’ll think… “I got this”… and guess what, you do.