If you or the life of someone you know has been changed by a childhood diagnoses of illness or special needs, you may be wondering how you can even begin to tackle all of the challenges that lie ahead. Our Executive Director, Janelle Irwin, offers her perspective and advice.
As a parent of a child that went through a cancer journey, I am asked often by families facing a new diagnosis, “What do we do?” or “So many people want to help, but I don’t know what to tell them?”. I have compiled (from my experience) what was beneficial for me. This is in no way a comprehensive list–just some helpful hints! Keep in mind, some of these items pertain more to a life-altering diagnosis that required a lot of hospital stays so it may not be a one-size fits all mold, but hopefully it is a good starting point to get your wheels turning!
For the Parents/Caregivers/Guardians:
- Positivity and look for the “good”:
- The most important and common thing I tell caregivers is that it is easy to focus on the negative and harshness of your new world. YOU have to focus on the good.
- Every single day, at the end of the day, make sure you find ONE “good” thing in your day. Some days it will be the great medical news! Other days it will be harder to find and you’ll settle on, “That girl smiled at me in the hall.” But always find something!
- Communication is overwhelming, especially in the beginning. Establishing ONE person to process all contacts is so helpful. This person can get important information to you, can organize those that are throwing out fundraising ideas, and sort resources. They can also arrange some of the above listed items. There is so much to think about when your life changes, the brain is frazzled, and the focus should be on the child. Having someone else man the daily to-do’s and phone calls is extremely helpful.
- Get a “recordable story book”. Record a story that can be played for your child when you cannot be there or for siblings that are at home while you are at the hospital, etc.
- For the siblings as they cope with the new diagnosis, I recommend the book, “Hi, My Name is Jack” by Christina Beall-Sullivan. (Ages 3-12) Hang Tough Foundation can provide this book to you at no-cost!
- If you have other children that friends or family will be caring for, make a notebook of how you want things done:
- Include bedtime rituals, discipline protocol, rules, chores–anything you want to remain consistent while you cannot be there.
- Timelines- Wake Up time, School Times, Extra Curricular Activities
- If family isn’t local- jot down addresses of favorite spots for easy access: schools, parks, church, mall, etc.
- Start of journal or spreadsheet of all the names and phone numbers of those that offer help. This way when you need something- you don’t have to recall from memory who volunteered.
- Make sure to list what they volunteered for- i.e. “Meals” “Childcare” “Cleaning” “Errands”
- Accept the help. No one fights alone. Allow those that want to help to do just that.
- Don’t wait on seeking help if you need it. Remember, Hang Tough Foundation can provide FREE counseling for any family in our network. Just ask.
- If you want to keep all the cards, letters, and notes:
- Buy a three ring binder and protector sheets.
- Insert the cards (opened up) in the protector sheets.
- This way, when you flip through the notebook, you can easily read both sides of the cards.
- This is another great task that you can ask someone that wants to help to do for you!
For Friends and Family:
Many will say “What can I do?” “How can I help?” or “Call me if you need anything!” Truth is most families experiencing a new diagnosis or a crisis, don’t know what they need or can’t even wrap their brain around where to start. My best suggestion is to simply ‘Do’. If you can, don’t wait to be asked, just do. Depending on your gifts, your finances, your expertise…there are SO many things that can be helpful whether you do them yourself, hire someone to do them, or simply set up a schedule of many volunteers. A few suggestions:
- Care for siblings-
- Finding childcare for the siblings is one of the most challenging aspects. Even if it is just taking a sibling on a playdate to give them a break and make them feel loved.
- Arranging meals is very challenging because things can change on a dime. If you can find a way to provide a home cooked meal to the hospital or to the family that is left at home, or best yet, on the day of discharge from the hospital.
- Sometimes just stocking the fridge and pantry with essentials is just as welcomed.
- Care Packages for Siblings-
- I missed my daughter so much during our hospital stays but one of the most memorable things that was done for her (and me, too!) was creating goodie bags for Kate. They would mail them to her but the key was that they were always signed by me. To let Kate know I missed her and was thinking about her. (She never needed to know I didn’t have time to go to Target and get the goodies…all that mattered is that it came from me.) ‘
- Cleaning the home-
- An immunocompromised child needs to come home to a deep cleaned house. And it needs to remain clean throughout treatment.
- Making the arrangments for carpet cleaning, upholstery cleaning, etc. can be extremely helpful.
- With an immunocompromised child, they cannot be taken into public locations for risk of germs. There were so many times that I needed one ingredient or a medical supply but had to wait because I couldn’t go anywhere with Grayson. And I never felt comfortable calling and asking for someone to go for what I needed.
- Calling while you are running your errands, “What can I pick up for you today?” “Is there anything you need while I am out today?” can be a huge way to lift the burden!
- Silence. There were so many times that I did not want to be alone, but I also didn’t want to talk. I was tired of talking but lonely at the same time. Being a friend who is willing to sit in silence and just be there is worth so much.
- Organizations- There are MANY organizations that want to help, but with that comes a ton of applications. They can take hours to fill out. If you are a close trusted friend, offering to research organizations and complete the applications as much as possible can be very helpful. This is maybe something to consider a few months into treatment…not right away! It’s too much in the beginning!
- Fundraising- The child is the primary concern, of course, and no dollar amount can be put on a kid’s life but the financial worries can be paralyzing. Consider fundraising ideas, rally people together, and start immediately!
- Go Fund Me or Indiegogo are great online fundraiser sites
- Booster.com for t-shirt campaigns
- Share Nights at restaurants
- Online parties for at-home-businesses like Thirty-One, Premier Jewelry, Scentsy, etc
- 5K walk/run or virtual walk/run
Finally, I want to remind you once again to connect with our foundation. Hang Tough is dedicated to providing support, and it would be our honor to serve you and engage with you.
Tough As Nails,
Hang Tough Foundation