I get a lot of questions about how Bean’s disease affects our day-to-day lives. For the most part, Tom & I work very hard to keep things as “normal” as possible for both kids. We try to do many of the things that other families with small kids enjoy. The kids’ favorite things to do are going to playgrounds, the Botanical Garden, the Zoo—typical toddler stuff. They love play dates and chasing other toddlers around and they destroy my house on the regular. Our lives are just as chaotic as one could imagine in a 2 bedroom, 1200 sq foot house with two, two-year olds can be. Yep, it’s loud.

There are many things that are “normal” or “no big deal” for most families that can be a very big deal for our family, though. I figured sharing more about some of these things could help our friends and family know why we sometimes act sketchy or hesitant when y’all are trying to be social with us.

Food

The biggest and most frustrating thing for me personally is how difficult food and eating in our house can be. At this point, Parental Nutrition (IV Carbohydrates, proteins, vitamins and often fat) makes up most of Bean’s nutrition. She has a central line called a Broviac in her chest and her infusion goes into it. Currently, her infusion goes over 18 hours and she also drinks a specialty formula that is partially broken down (this makes it easier for her finicky belly to handle). She does eat some very small amounts of “real” food as well. She has had periods of time when she has been able to eat more food and other times when she can’t eat or drink anything. This can also vary from day-to-day. When she can eat “real” food, her diet is quite limited. It is a likely that we could attend a dinner or go to a restaurant and there could literally be nothing available that she could eat. (One day I’ll post about her diet that has caused me great strife).

Another complicated layer is that Bean LOVES to eat. She treasures the bites of food she gets and can become very upset when she can’t eat what everyone else has. Our family rarely sits down together for meals anymore. Tom or I are often distracting Bean with something fun while the others eat and then we swap out. I miss our “family dinners” greatly. This also makes social gatherings difficult. So much in our lives revolves around food. Family events, birthday parties, church potlucks, holidays—all of these things are more difficult for our family. Please don’t be offended if we dodge a dinner invite with you. Food is just….hard for us.

Water

I love the water. I love swimming, boating and all activities that involve water. I love pools, rivers, lakes & oceans. I love water. Another major bummer is that Bean’s Broviac CANNOT get wet. If it did, it could pose a massive infection risk that could result in her becoming critically ill. So, at this point in time, you won’t see any family photos of us splashing in the ocean. I do have a few strategies that have allowed Bean to do some limited swimming, sit & build a sandcastle and play in a splash pad. Taking a bath even requires a considerable amount of attention and she gets a lot of “sponge baths.” Participating in these activities is always a calculated risk and we have to be vigilant to make sure we are protecting Bean’s line the entire time. The activities are short lived and if it looks like her Broviac is going to become compromised, it’s an immediate game over. Also, because Bean gets most of her fluids via IV, she doesn’t do super well in the heat because giving her “extra” fluid is a lot more complicated than tossing a bottle of water at her. So, bottom line, please don’t suggest spending a day at the Six Flags water park as a fun activity to do for our family. (There is a company that makes shorty dry suits in tiny person sizes that would keep her torso completely dry. So, maybe one day, we’ll be able to give Beanie that beach vacay where she can splash in the waves to her heart’s content).

Planning

We have experienced many ups and downs helping Bean battle this MMIHS monster. One of the most anxiety-provoking things about the fight is that things with her can change very quickly. I have put her to bed after an amazing day filled with friends and fun and taken her to the Emergency room the next morning.   We left grandma and grandpa’s house on Christmas morning and headed to the hospital. I have bailed on my coworkers more times than I would ever want to admit because Bean had a sudden change or event and I am suddenly needed at home or the hospital in “mom” capacity. So, when we get invited to events, I dread the RSVP. Please don’t think I’m being a slacker or ghosting on the invite. The truth is, I am always worried that something will happen with Bean and we won’t be able to make it. I also do more than my fair share of making plans with folks and then bailing at the last minute because things changed with Bean. (Consider this an apology to all of those who I have cancelled on recently). We try super hard to live life and plan to do fun things with and without our children, but any time I confirm a reservation or purchase tickets to something, my heart skips a beat.

Germs (Waring–This one contains my biggest soap boxes)

All parents know that sick kids are the worst. Everyone hates to have their kiddo deal with a nasty cold, a GI bug, the flu, etc. Plans get disrupted, parents have to call into work and no one gets a good night’s sleep. Sick kids suck. With Bean, being sick is multiplied to the 10^th degree. Her immune system isn’t compromised, so she isn’t more likely to get sick than any other kid, but if she does become ill, she is considerably more affected by it than other children. “Typical” kid illnesses often have a negative impact on her already poor gut function and her belly can’t hang. She has been hospitalized more than once for a week+ with illnesses that would have been a couple rough days for any other child. Illnesses also seem to set her back on any progress her gut has made and she is often unable to tolerate any amount of food in the weeks following an illness. This makes our family a bit germ-a-phobic. We always have hand sanitizer handy and will unabashedly avoid folks we know to be ill. Please don’t make a play date with us and then say “Oh and Jimmy has had a runny nose for a few days. I think it might be allergies. I hope that’s ok.” Nope, its not ok. The play date is cancelled, better safe than sorry. Even worse, please don’t make plans with our family and then show up with a member of your family visibly ill. It tends to make me curse, then cry, and always ends in an awkward interaction. We don’t do a lot of crowded/busy places during flu season and for the love of all that is good in this world, vaccinate your kids and get a flu shot if you plan on hanging around us. Beanie is depending on it. (Yup, shameless vaccine promotion is happening in the blog, folks. This mama has seen the ugliest versions of vaccine preventable diseases up close and personal and she ain’t messing around).

I pray that after reading that I didn’t scare you into not wanting to hang with our family. My hope is that this bit of insight makes it easier for folks to find ways to enjoy spending time with us. The people who have been accepting and understanding have truly been the difference makers in our lives. We love getting out and about and seeing those we love. Also, are kids are pretty dang awesome and why wouldn’t folks want to spend time with them?  Tom and I are OK as well. 😉