Parenting is hard work. It takes more time than we have and more energy than we can possibly imagine. So when you are parenting with a chronic illness, such as Crohn’s Disease, there are some extra precautions that are necessary to stay healthy.
I was diagnosed with Crohn’s Disease in 2007 at the age of 19. By 2009, I needed major abdominal surgery to give me my life back. The risks included the possibility of infertility. At 21 years of age, I wasn’t thinking about settling down or having a family so it was a no brainer—do the surgery. Fast forward 7 years and my husband and I were ready to have children. My disease was mostly under control, but we had no idea if I’d be able to conceive or not. Too many strong woman with this exact illness try for years or find other ways to conceive (IVF, IUI, Surrogacy). However, that is not my story; we were blessed to have no trouble conceiving not only one baby, but two.
My twin di/di boys are 8 months old now. I had a pretty uneventful pregnancy. I made it to my scheduled C-section at 38 weeks. Twenty-four hours after they were born, an ileus made itself known. (An ileus could happen to anyone. It is when your intestines fall asleep from the epidural and don’t wake up for hours, days, or weeks). I was in the ICU for several days and my boys were released and sent home with dad and grandparents 3 days before me. Once home, I did not feel good for weeks. Not only was I recovering from a C-section, but I was recovering from an ileus with a postpartum diseased gut. The pain was unbearable at times.
Once I was recovered I learned a few things that helped to manage my Crohn’s Disease while parenting my twins. Here are my tips:
1. Make sure you have a strong support system.
This is the first rule when parenting with any chronic illness, including Crohn’s Disease. Since their birth, I’ve been hospitalized two more times, had 2 surgeries, and 3 procedures. In that time, my husband and I have had to rely on family members for support. Without my family, I would not have been able to even check myself into the hospital due to my husband’s work schedule. My mom has spent days at my house while my brother and friends, in turn, would help assist.
2: You are going to have to be flexible and give yourself a break.
Besides feeling like I abandoned my babies while in the hospital, breastfeeding did not work out the way I’d hoped for many reasons. I had a low supply for one; and there were days I had to pump and dump my precious supply because of medication. Ultimately the boys were fed mostly formula, but I’m still proud of every last drop I was able to express and share with them. This was hard for me to accept at times, but I did my best.
I made a deal with myself before they were born that when feeding them I would always make eye contact and smile at them. There may have been tears in my eyes from the pain, but I had control over this one little thing. I have heard other moms with chronic illnesses talk about feeling guilty about not having the energy to keep up with their toddlers. It is not our fault. It would be awesome to have a healthy functioning body, but sadly this may not always be the case.
3. Get creative.
Another lovely (possible) side effect to having Crohn’s Disease is painful swelling of the joints. On days where my feet or knees are swollen, I have to move around less. On cool days, I’ve taken my boys outside in a water-less baby pool to play. They love being outside; I don’t have to walk or push a stroller; and we can all just sit and play in the pool. Other moms that I’ve reached out to have talked about having movie days in their beds when ill. They make a whole day out it for their kids to enjoy and let their own bodies to recover. Or they make the best out of a hospital stay by watching cartoons and examining all of the weird stuff that you might find in a hospital room with their kids.
4. Be honest with your kids (age appropriate).
I haven’t had to deal with this yet, so I asked some veteran moms who also have Crohn’s Disease how they deal with it. Most agreed that it is important to help your kids understand your illness and not keep them in the dark. One mom went so far as to using props to help her little ones understand what kind of surgery she was having. Most moms feel that educating your kids regarding your own illness will allow them to understand and perhaps be more sensitive as they grow up.
And as your kids grow, many moms have had to entrust and enlist their kids to help out around the house sooner than other parents. Many believe that this has made their kids more responsible and mature for their age. We aren’t asking our kids to be the head of the household, but kindergardeners can sort socks, while 10 year olds and help dust and clean.
5. Take care of yourself.
You are going to have to make yourself a priority at some point if you have Crohn’s Disease; it may as well be in order to avoid a hospital stay or worse. If you don’t keep yourself as healthy as possible, then you aren’t going to be able to care for your kids to the best of your ability. You have a chronic illness. Forgive yourself. Take a deep breath, take your meds, take a bath, get a massage, or go out for coffee with a friend. Whatever it is you need to do to help keep yourself healthy. Make time for yourself.
Making sure you are healthy enough, whenever possible, is most imporant so you can enjoy your twinnies as much as possible. I hope my tips will help you manage your Crohn’s Disease if you are parenting twins.
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Alex Brink and her husband of 6.5 years live in the greater Pittsburgh area. Alex is a Licensed Professional Counselor and Behavior Specialist. She is currently a stay-at-home-mom to her 8 month old twin boys. She enjoys playing the ukulele, doing yoga, and taking her boys on walks.