Six Tips to Parenting Chronically Ill Teens

The last words any parent wants to hear are - "Your child is sick!" That's bad enough, but parents especially don't want to hear that the illness is chronic or life threatening. When this happens a parents' world has just been

turned upside down. What was super important - school, chores,

and whatever conflicts are causing a crisis in your lives, now take a back seat to this new information.

Some rethinking must be done, and parents enter into

a world of "ifs", and "might be's." Everybody in the family

has a perspective.

The teen's perspective is often overlooked, because the big elephant in the room is taking up all of the family's energy and attention. The teen is in the most exciting stages of life. They are getting their first taste of independence. They may be entering high school or applying for college. Or they may be discovering what is unique about themselves, what their passions are and where they will fit in the world. This is indeed a hard blow to teens!

Emotionally, they may feel left out, powerless, misunderstood, and isolated. Teens will hear daunting news, sometimes downright hopeless news, and learn medical terms that most adults will never know. They may face extreme losses: the loss of mobility, friends, school, academic knowledge, their future goals may be thwarted. Yet all of this becomes secondary to their fight for their lives!

Independence may have a new meaning for them. Their independence, instead of be defined as getting a job or driving a car, may now be defined as no longer being in the hospital bed, in a wheelchair, or having tubes removed from their bodies. With all of this going on many teens manage to find some joy in their lives.

The parent's perspective is equally as harsh. They may find themselves on the cusp of receiving some of the rewards for which they have worked so hard, graduation from high school, prom, homecoming games, discussions and decisions on what career the teen wants, and visiting college campuses. They may not be able to attend a graduation or watch their teen get dressed up for homecoming games or the prom. Those times may be spent in hospital rooms, waiting rooms, or in emergency rooms with discussions centered around treatments. Parents may have to take on the roles of pseudo nurses, and medical attendants, which wasn't a part of the future plans they had for their teens.

There may be a constant internal battle between going to work or staying at the hospital. There will be decisions to make on behalf of a teen who under normal circumstances would battle to make their own decisions. There will be internal conflict on decisions that were made on behalf of the teen, and on which decisions the teen can make.

With so much going on, there may be some serious losses in the parents lives. Right at the top is the possibility of marriage failure. Not all, but some marriages are already taxed to the limits with stress. The news of a chronic, possibly deadly illness may be the straw that breaks the camel's back. Parents may blame themselves or each other, and communication may breakdown. Each may be so saturated with bad news, that they only see problems when they see each other!

They may lose jobs, friends, and their family support more than likely will wane as time pass by. Parents will be reminded of some losses as they hear about their teen's friends accomplishments and milestones that are reached. In all of this parents may forget to build relationships with each other and with their teens. The family can become a mini medical team, and everything about the family will be about the illness. Although much discussion will be about medical decisions, there can still be discussions about other things as well.

Here are six suggestions to help families find some joy in this sea of desperation:

1. Set aside time to see the good. Sometimes you have to dig deep to find something good going on in life. Dig!! Don't allow every waking moment you have together be spent talking about the illness. If it's just five minutes a day, take time (you may have to schedule the time) to say positive, good things about your lives. It may seem unnatural at first, but persist. Increase the time as you go along. This may take a concerted effort, but it can be done.

2. As far as possible, encourage normal teen activities in your teen's life. Encouraging your teen to interact with her peers, going places with friends, and participating in activities may decrease their feelings of isolation. They may not feel so misunderstood, and this may provide for them an area of life that the illness doesn't take over.

3. Parents avoid blaming each other. It's easy to blame each other. Every parent makes good decisions and poor decisions. You may be called upon to make some very difficult decisions. Playing the blame game may immobilize one or both of you. Resentment may build and misunderstandings may not be addressed. Do your best to encourage each other. Respect each other's role!

If you are a single parent, others may blame every decision you make. They don't have the eagle's eye view that you have. They don't know your teen like you do, and they haven't heard first hand from the doctors what you have heard. Others may minimize what you are experiencing, overlook what you are going through. You may have to get support in groups, and from other single parents with sick teens. You may even have to build a whole new support team.

4. Include your teen in making medical decisions. It's their body! Allowing them to make some decisions and being a part of discussions may decrease their feelings of powerlessness in this area of their lives. Always ask them if they want to be a part of discussions.

5. Take time to be with each other and friends. Parents take time to spend with each other, friends and extended family members. There can be "illness free zones." These are time periods or outings in which you are not going to discuss or think about the illness. These time periods are to help rejuvenate and energize you as a couple and individually. Don't allow guilt to creep in if you find yourself feeling some relief, and God forbid even some happiness!

Push guilt back! You need happiness and joy. They work like medicine, they decrease stress, which is a great contributor to illness. The last thing your family needs is another illness!

6. Stay in the here and now. It's so easy to want to do some fortune telling. RESIST!! The future can be pretty scary. Of course all of our hopes are in the future, but the future can also hold failures and disappointments. Learn to make 'right now' count. Focus on the good that is happening, right now. Take each day as the blessing it is intended to be. Use mindfulness strategies daily, or if you need to, use them hourly.

Go beyond the illness! If you just look at the illness you will miss the joys that are just beyond the illness. Hard times are coming, they are coming for all of us, Why should we spend our good moments focusing on the potentially bad moments. Don't live two lives at once. Just live this one life. Live it focusing on the good that is here today!

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