How do you do it? Where do you find the strength to mother a terminally ill child?
I am often asked this question and it catches me off guard each time. I guess I don’t think of baby as terminally ill. If you’ve met him you know that he appears healthy and he certainly couldn’t be any happier. He’s the most grateful and happy child I’ve ever known. It is not until you spend time with him that you realize something isn’t right. Friends and family read my Facebook updates about baby and to them it can feel overwhelming. Physicians hear that I haven’t slept but one night through for the last 30 months and wonder how I do it and still smile. Others hear about our long hospital stays or many day long trips to a hospital 2 hours away and wonder how we manage it all with 8 other children at home. Well, let’s start from the beginning and I’ll try to share in clarity the grace of God that makes all this possible and not the least bit a burden.
As far as how we are not overwhelmed by baby’s diagnosis the beeping machines, breathing treatments, multiple medications, special formulas, or sleepless nights, it’s pretty simple.
As with anything, we have to keep our emotions in check and make sure we’re not distorting truth with the emotions at hand. I’m a pretty big advocate of teaching my children to use their God given emotions in a way that would glorify God instead of allowing their emotions to rule them. I have to put that lesson into to practice on a daily basis.
With our emotions in check, the next huge benefit is good communication. This includes knowing how to communicate and being surrounded with others who value the importance of communication as well. There have been many times that my Joe has “heard” what I was saying when I didn’t even know how to say it. Times when he could clearly see what I needed and then step up to help me. In the same way, I have seen areas that I need to step and take care of things so they are not a burden for my Joe.
Teamwork would be another vital component to this answer. Everyone in the family, including the married children who have their own families, has learned vital skills so they can offer care for Daniel as well. Everyone is kept up to date on doctor visits, suggested treatments, and upcoming surgeries or other major changes. They become not only a support system, but a priceless prayer team. Each child here in the home is aware of what is happening, how to pray, and has found little and big ways to help care for baby.
With God’s grace, emotions in check, good communication and teamwork the burden or sense of heaviness of the situations is relieved.
As far as those hospital visits the above is very applicable, but there are also some practical things I wanted to mention just in case you’re looking at a hospital visit in the near future.
If you have a terminally ill child you might want to:
- Have a packed suitcase for yourself and your child in case a doctor visit leads to admittance into the hospital.
- Keep extra syringes in your purse. (Especially if you have a child on a G-Tube you never know when you just might need it.)
- Set the alarm on your smart phone with reminders for medication or feedings. In the details of the alarm put the medication name and amount. Do the same with your feedings. This helps when you’re asked what meds your child is on or what their feeding schedule is, you can easily find them on your phone.
- Put all your doctor appointments into your phone as you are talking at the doctor office, over the phone, or in person with the therapist.
- Keep a file for each year and place all paperwork for baby in those files. Include all those helpful information pamphlets.
- When setting appointments make sure that you keep your day clear when there are doctor or therapy visits. You never know how long they will take and it’s much nicer to sit for hours without the stress of having to get somewhere else
- Make it a rule to always arrive to your appointments early and with a smile. It’s refreshing to those that care for our children to see us smile.
- I always dress baby in his Sunday best for each doctor appointment.
- Make sure each machine that baby uses is fully charged BEFORE leaving the house (yes.. hard lessons learned with this one)
- Always take one child with you as your “helper”. Be specific in what you request of them. I had a nine year old join me the other day for over 6 straight hours of appointments. He was prepared for it ahead of time and was a witness to many how children really can be a blessing to adults. He sat quietly, interacted when spoken to with a polite and friendly tone, and didn’t grumble or complain. This doesn’t just happen. We have to be ready to teach our children how to do this by giving them real life opportunities. NOTE: I would suggest you don’t just dive into real life opportunities until you’ve done a great deal of training at home.
- What to pack in your suitcase when you know an overnight hospital stay is required:
- Clothes that are comfy yet look nice. I’ve found that if I feel like I’m clean and nice looking I have a better outlook on things. Oh! and don’t forget your pi’s and comfy socks!
- Make up
- Brush and other hair supplies
- Toothbrush, mouthwash, tooth paste
- Don’t forget your vitamins for yourself- it’s important we are taking care of ourselves!
- Bring your Bible
- Electronic devices you use along with chargers. Don’t forget to take your charger home with you. One nurse told me it is the number one item that fills their “lost and found” department.
- Phone numbers. I suggest you have one person that makes your calls for you. I can call my daughter and say, “Call everyone and let them know.” She knows exactly who “everyone” is and how to reach them.
- All of Baby’s medications, machines, and syringes. Never assume because you’re at a hospital they have something. We once had to drive home to get our Micky Button (G-Tube kit) for baby because the hospital didn’t have any on hand and had accidentally pulled his out. There have been multiple times they had to order his meds or formula because they didn’t carry it in their pharmacy.
- Bring a few toys. I only bring two at the most. Make sure you ask the hospital if they have a play room or toys they could bring in. It helps make the stay not so scary.
- Don’t forget to pack a few snacks for yourself. You’ll need them! It might be difficult to find time to grab a bite to eat or anything you would want to eat. Remember that often children can’t eat before procedures so be prepared to go without food so your little one doesn’t see you eating in front of them.
- I love bringing food magazine to look through along with my iPad so I can read magazines in my News stand.
- If your child is wearing diapers make sure he has a fully packed diaper bag
- Clothes for your child as well as bath supplies
- Baby’s comfort items: Binkie, Stuffed animal, blankie etc.
- A pillow from home for yourself
- I always make sure I have cash with me as well as my bank cards.
Have you spent nights at the hospital and have something you bring, that I missed? I’d love to have that added to this list. Make sure you share in the comments.
Until our next chat,
Mrs. Joseph Wood