“So your brother or sister is a little bit different than you and the rest of the kids at school. While you can eat all the candy and ice cream you want, your sibling has to carefully watch what they eat on a daily basis.”
Regardless of the condition, managing family (especially sibling) dynamics can be a challenge. For families managing Short Bowel Syndrome, here are some tips and tricks to help your little ones both understand and support their sibling’s condition.
Talk About It
First thing is first, talk about it! None of us (at any age) like to be surrounded by something we do not fully understand. For children, a lot of internal growth comes from external comparison and observation. For example, your child may discover their belly button by simply noticing a friend at the pool with their shirt off.
While most of us share a mirror image of body parts, how can we explain the scar for most Short Bowel Syndrome patients across their belly? How do we explain the feeding tube or potential catheter in their chest? Perhaps an ostomy? While each age group will require a uniquely sensitive explanation, the easiest way to encourage comfort and understanding is by openly explaining what each unique attribute is and what each tool can be used for.
When questions are asked (even by friends and family), take the time to explain it. Without doubt, it will become overwhelming, there will be times you do not feel like explaining and there will 100% be overstepping of personal boundaries. But it is up to you to educate those around you, especially your other children.
Show Them They Are Special
Pediatric Short Bowel Syndrome requires a lot of extra care and attention. While you are doing your best to juggle the daily responsibilities and care for your children, you have to keep in mind that each child requires their own set of eyes. While fortunately, you may not be managing two unique conditions, keep in mind that each child needs a lot of attention and love to encourage emotional and physical development.
As hard as it may be, take the time to give each of your children the alone time and attention they need to feel the love. It can become overwhelming and an easy drift towards spending time with your child who needs you the most, but while their bodies might not show a signal, chances are their hearts are. “Date nights” or simple one-on-one trips to the store and conversations can be a great way to show each child you care about their unique needs as well.
Ask them for help around the house. Maybe you need help getting a diaper or changing outfits after an epic Short Bowel Syndrome blow-out. Maybe you need a little help preparing their bottles for the evening. While you can measure your own child’s ability to lend a hand, encouraging them to participate in the daily care of the sibling is a tremendously important way to encourage both understanding and support within sibling dynamics.
There is no prouder moment for a young child than becoming an older sibling for the first time. While those feelings of joy can often be overwhelmed by jealousy and competition, there is without doubt a sense of care and pride that comes with the new role. Empower that feeling and encourage your child to play a helpful role in raising their siblings (with or without Short Bowel Syndrome).
Managing Short Bowel Syndrome takes a village and certainly a household. Supporting each other and encouraging siblings to play a role in the daily management thereof, will help level out family dynamics. All children need love, support and attention to grow with a strong sense of confidence and emotional intelligence. Your hands will be full with each of your children, but it is up to you to take a deep breath and share the love.