10 Holiday Wishes We Have as a Family With a Son With a Rare Disease
Having spent three of the past six years in the hospital during the holiday season, these are some of the wishes we have as a family with a child who has a rare, chronic and life-threatening illness:
1. For everyone to be able to sleep under the same roof during the holidays.
It sounds silly, but being able to say goodnight in person, give your family kisses and lie down in your own bed is a gift and something that shouldn’t be taken for granted. The peace you feel just knowing you are all home and sleeping as a family is heart-warming and a luxury many of us don’t always get to enjoy.
2. A home-cooked hot meal in our own home.
Everyone can appreciate the love you feel when you eat a home-cooked hot meal at your own home. How many of us get a chance to sit down and enjoy a dinner prepared from scratch? It’s a luxury today with our busy lives and a skill that many families don’t have the time to perfect.
3. Having family and friends over to break bread together.
Being surrounded by people you love is one of the best gifts anyone can have. We’ve personally spent many holidays eating hospital food while our extended family and friends were able to enjoy the luxury of simply being together enjoying a home-cooked meal together. The conversation, the hugs, the games and simply watching a TV show at home together with full bellies is the icing on the cake for the blessing of spending time with the people you love.
4. Surprise visits and phone calls.
Just hearing from a friend or family member can brighten the day of someone dealing with chronic illness. Light-hearted conversations about the weather, a vacation or anything other than the ins and outs of everything that encompasses chronic illness can make an incredible impact and create positive memories that can overshadow challenges endured on a daily basis.
Who doesn’t enjoy a meal they don’t have to cook, especially one made with love from a friend or family member? They took the time out of their day to shop, prepare, cook and deliver something to you, so you can actually relax and appreciate the people in your life who care about you and your family.
Casseroles can be heated easily and even brought to the hospital, so the family can eat together. Eating together as a family is a practice we’ve always maintained whether one of us is in the hospital or at home.
6. A clean house.
Offering to help clean or have the house cleaned by a service before the holiday season is a huge benefit to a family struggling for a “normal” life in the face of chronic illness Imagine handling every normal task an average parent has and adding on top of it medications, infusions, multiple specialist visits, therapy visits and school meetings. How often could the family, particularly the one acting as the project manager of the home, actually find the time to do a deep cleaning of the home?
7. Grocery store gift cards.
When you have enormous medical expenses, a mortgage, utility bills, insurance payments and various fixed expenses, where is the one place within the budget that has the most flexibility? Unfortunately, it can be the grocery budget for some families. Chronically ill patients and families, as well as the elderly, most often have limited funds available to enjoy some of the better items at the grocery store. Being able to purchase a few items they would consider a luxury at the grocer would not only brighten their day, but yours as well just knowing how much they’d appreciate it.
8. A subscription to Netflix or Hulu paid for a year.
At about a $100, you can provide the family with one less expense just knowing the unpredictable circumstances of their lives has them catching up on their favorite shows or seeing a movie at a time that is most convenient for them. They won’t be missing out on entertainment and time to de-stress just having the ability to stream a movie or TV show whether they’re in the hospital or at home.
9. Having family photos taken by a professional.
While this may seem like a very ordinary thing for most families in preparation for sending out their holiday cards, I can honestly say that I don’t know very many families affected by chronic or life-threatening illnesses who actually have the time or the budget to be able to afford this luxury. Yet a family photo is something every family will look back upon with fond memories. Providing this type of gift would last a lifetime.
10. Help decorating and taking down holiday decorations.
We’ve personally received this gift while in the hospital and can say this was a huge weight lifted off our entire family. My daughter was able to decorate with her grandmother, and I had help taking things down to put away. The time spent is decreased and sharing this type of holiday preparation with people who take the time out to spend it with you truly brings out the true meaning of the holidays.
It is my hope this list helps people in your life who are facing illnesses. These are the people who tend to do everything themselves. Unfortunately, these are also the people who don’t usually ask for help and tend to be the ones who need it the most. Showing someone you love and care about them doesn’t always require money. Sometimes it only requires a bit of your time and attention. Pay close attention to the people in your life and don’t hesitate to show them you care. Once you do, you will be rewarded in many ways!
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