Raising a Terminally Ill Child.

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When people hear the words “terminally ill child,” their mind goes straight to in the hospital on death’s door. The truth is, there are a great many terminally ill children with unknown life expectancies, progressive conditions, congenital defects, chromosome abnormalities, and much more living fulfilling lives for as long as they have here. Focusing on the end of their life, discounts all of the living that happens!  Raising a terminally ill child is something I do daily. While it can feel very isolating, I want you to know that you are not alone!

Terminally Ill Child

 

My daughter isn’t dying of Ataxia-Telangiectasia; she is living with it.

 

When Bea was diagnosed at age two, I sobbed into my husband’s chest and asked, “How am I going to raise a child that I know I will bury?” At that time, we didn’t have an answer to that question. Understandably, we were simply too steeped in grief to look past the moment we were living in. After all, those living with A-T have an average life expectancy of teens to early twenties. For a solid year, we focused on the terminal part of her condition. We needed to do so to process our grief. It was all encompassing, but slowly the fog lifted, and we shifted our focus to raising our child and living.

 

Raising a Terminally Ill Child

 

To be perfectly honest, it is absolutely impossible to forget that you are raising a terminally ill child and that he or she won’t outlive you. Over the course of time, the number of nights you spend crying into your pillow and worrying all night long lessens. With the help of an amazing therapist, we were able to move through our minute by minute grieving. The expectations we have for our child needed to be deliberately changed in our minds. We had to adjust all of those major life goals we created for her. Once we were able to do that, what we discovered was something entirely unexpected!

 

Terminally Ill Doesn’t Mean Talentless Individual!

 

Don’t become so steeped in grieving and all the things that your child cannot do. To put it another way, focus on and discover what your child can do. Our daughter’s condition is progressive, and that means it will continue to get worse as time goes on. This means that her “talents” are continually changing. Raising a terminally ill child means looking for the meaningful gifts your child possesses. For example, our daughter has the most compassionate heart. She makes those around her feel loved and special. We choose to nurture that amazing quality in her. We can’t drill her on spelling words, but we can encourage her to color pictures to make people smile! Raising a terminally ill child means adjusting your expectations. Adapting goals and expectations for our daughter was not without tears and a great deal of jealousy of those who weren’t in our position.

 

Setting Goals

 

Our daughter started off in the public school system, but now she is homeschooled. Like many other terminally ill children, she has a compromised immune system. She is a healthier child now that she has less exposure to the germs at school, but we do understand that this isn’t an option for so many American families. Despite going to school at home, she still has a curriculum tailored to her skill level. This isn’t without difficulties either! She struggles with her short term memory and with jealousy of her siblings who are not just exceeding her knowledge base but running laps around her. Bea is very much aware of being “other” or different than her siblings. Our job in raising her is to teach her to celebrate her strengths and to not compare herself to others.

 

Que Laugh Track

 

I genuinely understand how hard that last sentence was about comparing herself to others. As the parents of a terminally ill child, that’s what happens every single day. The continual comparison to the “norm” helps us see if our child is making progress, if they are improving or deteriorating, and on and on. There are as many examples of how we compare as there are medical conditions. Comparing your child to others feels like it is of critical importance, and medically that may very well be true. It is every other area in which we feel compelled to see how our children measure up, that leads to feeling “less than.” Continual comparisons only serve to increase my anxiety!

 

Mother And Daughter With Staff In Pediatric Ward Of Hospital
Mother And Daughter With Staff In Pediatric Ward Of Hospital

How do we stop comparing?

 

Set goals that are specific to your child. Tell your friends your goals and have them celebrate those goals and mini goals with you! Do not feel ashamed or embarrassed if your goal is that your child went poop at school, took two steps, put their own pants on, or say a new word. These things are BIG DEALS! If you do not have the support of friends or family, I encourage you to find your people and tribe online.

 

Setting Rules

 

My daughter is now nine-years old. She has the sass and temperament of a nine-year old too! It is far too easy to become over indulgent because our kids have shortened life spans or due to feeling sorry for them for how challenging their lives are. The truth of the matter is; you have to live with this child! Raise them like the adults you wish they would be able to become! Rules help establish normalcy, consistency, and security. I assure you, “Don’t you roll away from me!” is a sentence used frequently in our home. Our terminally ill child doesn’t receive any preferential treatment. Besides, the last thing we want is our other three children to harbor any resentment against their sister or us.

 

Know Your Limits

 

In that first year after diagnosis, I was prone to spontaneously crying. I was a mess. My husband and I devised a code word to let the other person know we needed a minute to collect ourselves. We called it “the sniffles.” If we had the sniffles, we were struggling with coping. It was understood that we would allow the other to go and take the time they need to pull themselves together and there were no questions asked. Knowing your limits, understanding where you are emotionally, and working as a team and support system to each other is critical to raising a terminally ill child. Between doctor’s appointments, individualized education and health care plans, dealing with insurance, managing the emotions and needs of other family members, and having incredibly hard conversations about end of life decisions, there needs to be some self-awareness of when you are at your limit.

 

Planning Health Care for Terminally Ill Child
Planning Health Care for Your Terminally Ill Child

Devise a Plan

 

It’s one thing to know you are at your limit, but what do you do about it? Make a list of the following things and have it handy to email to family and friends. People will ask what they can do to help, but often our brains can’t focus on a single thought in the moment of crisis. When things are calm, make a list of the following and email it to a designated close friend or family member.

 

  • Your important phone numbers. If something happens, who is working the phone tree?
  • List of places that deliver to your house and what you typically order. Be sure to note any food allergies or things you don’t like to eat.
  • List of places that deliver to the local hospital.
  • Location address name of your children’s schools. Make sure you have friends or family on the pickup list.
  • Make a list of things you don’t mind people helping with. If you are ok with friends helping clean, do laundry, watch your other children, babysit for an hour so you can have a private conversation with your spouse, then make sure to write that down.

 

In short, you need to devise a care plan for YOU and your family when the time comes and you need support.

 

Get Organized

 

I have lost count how many times I have been asked to fill out my child’s medical history, current medications, and doctors. She is NINE. I don’t remember the exact month she decided to roll over or crawl. I mean, I remember when she walked! Have mercy, there is only so much information my brain can retain. I highly recommend buying yourself a binder to hold medical information. The medical staff  will laugh when you pull out your old school binder, but trust me it will pay off. I purchased a lovely medical USB, and not a single doctor will use it. Having copies of letters that doctors have mailed us, lab results, and such and they are ALL OVER THAT!

 

How to Build a Medical Binder
How to Build a Medical Binder

Prepare

Not much makes more people uncomfortable than having to discuss a terminally ill child. They feel the instant need to do one of two things. People will either try to comfort you by offering platitudes or they will get technical and try to “solve the problem.” Their attempt comes from a place of sincerity and genuinely trying to say the right thing. Chances are highly likely most people you encounter will say the wrong thing. In the beginning of our journey, when we were very raw, these words cut deeply. Now, we have a bit thicker skin and a prepared set of responses that we can deliver without connecting to our emotions. I suggest you prepare a canned response.

Here is an example:

“I just don’t know how you do it. This is awful,” they say.

“We take it one day at a time, and focus on making it the best we can,” is your response.

“I’m so sorry! Are you ok?” they ask.

“We take it one day at a time, and focus on making it the best we can,” is your response.

“Do you need anything? How is she doing?” they ask.

“We take it one day at a time, and focus on making it the best we can,” is your response.

Sometimes, we just aren’t in a place where we can handle questions and hold it together. You will have to guide your friends and family on what you would like them to ask. Perhaps you could give them the sentence, “I’m thinking about you and love you. If you need to or want to talk or not talk about it together, just say the word.” This gives you the chance to handle the situation as you are able. Remember, the more you say, the more you open yourself up for criticism. It is amazing how people all of a sudden have medical degrees courtesy of Google. Again, I recommend a canned response such as, “Thank you. That’s something we will discuss or think about.” Then move on as quickly as possible. Although everyone’s responses are unique to their own situation and needs. Just remember to not overanalyze or overthink what other people’s opinions. It won’t help you.

 

Breathe.

 

I know this is a lot of information all at once, but we will get through this together. Just take it one moment at a time. There is no rule book on how to do this. We are all human, and Lord knows this is the hardest thing any parent can experience. Remember to breathe, eat, sleep, and take care of yourself too. You will find your own way of coping and not just surviving but thriving. In the wise words of Dory, “Just keep swimming!”

 

 

 

 

 

 

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