Parenting a Chronically Ill Child & Maintaining Your Relationship

parenting

You will always remember the moments before you learned – squeezing your partner’s hand, fervently praying, scared beyond words, waiting for the doctor’s dreaded diagnosis.  Your child, your baby, has a chronic illness which may be impossible to cure, may be life-shortening, certainly life-altering – for your child, and, of course for you and your family.

Once you’ve been informed of what to expect, and what not, the medications, the side effects, the pain, diminished energy, depression, fear,  psychological, physical, emotional manifestations from the illness, how you will talk about it with the other children, how you will be certain to include them so they don’t suffer from the loss of you and the attention they need and deserve.  It will be an enormous challenge that will have its moments of despair, exhaustion, love, appreciation – all of it – in abundance.

The person whom you have loved, committed to, and planned your life around has also been hit where they live.  They may not be taking in or aware of the details at the same time and in the same way you do.  Respecting those differences is critical if you two are going to survive. How do you face this together, understanding you may not always  agree on things, yet never disengaging from each other?

The demands of it all, the diminishing finances and available time, the children’s individual needs – there may not be a lot left over for the two of you.  This is where you become a magician and must hone your empathy skills beyond what you need for yourself to survive.

Maintaining the loving connection is a challenge in the best of lives, in the best of circumstances.  It is imperative for both of you to have a soft place to reach for, when you need an emotional respite and a recharge.  If your love is to last,  you must be able to find that in each other.

If I ruled the world, everyone would be required to understand themselves and their ways of approaching life, before they commit to live and love another. That may mean seeing and exploring with and learning from a professional who is steeped in the knowledge of human nature and how we develop into the people we are.

All of us would benefit from healing old wounds and knowing how to adjust our perceptions, our biases, so we are open to living fully – appreciating what we do have instead of bemoaning what we don’t.  Seeing a professional would also be a place to learn coping skills, ways to relieve yourselves from the incredible stresses of your situation and an opportunity to really learn  how to talk with each other.  I’m talking about sharing your deepest  truths, your fears, your anger – and, to be able to do it safely with a partner who knows how to hear and support you.

Communication is one aspect of life where we often fail ourselves and our relationships.  Each of us would benefit from learning the fine art of truly listening and understanding differences in the other.  This part is what is usually missing in conversations.  People seem to be preparing their retort, their defense, working towards proving themselves right

When we feel really heard, it changes relationships from an external to an internal connection.  From this place you can begin to calmly resolve issues together.  This is also a way to more effectively speak with your children and get better cooperation from them.

If you and your partner remember to do the little things that say you are thinking and caring about each other throughout the day, you will have moments of felt appreciation which will help keep your bond solid.  Each of you might make a list of things you would like the other to do for them –  things such as a phone call just to say, “I love you.” or a special meal, surprises. Then swap the list and keep your love alive!

If I were your guide, I would remind you of the importance of finding at least fifteen minutes every evening before you go to bed, to talk about something good that happened during your time apart and, to reaffirm your appreciation for your partner in whatever way you can

Find funny things to share.  Jokes, stories, funny movies – because laughing together is a great connector.  It eases tensions and is a healthy way to cope with the multiple stressors of your lives.

You know what else is necessary for a full relationship and a full life?  It is keeping your sex life active and interesting   especially under the circumstances.  Your children benefit from seeing you affectionate with each other and certainly with them.  They don’t need to know what you are doing behind your closed door.  However, their understanding that their parents need time alone is an important message.  And you do need time to nourish each other both with tenderness and pleasuring touch, and with passion that can help you transcend the obligations of your lives.

Yes, you both may be tired; your hearts may be heavy from life; you may be very concerned with what is going on with your family. However – if you let this part of your love die, you will be putting yourselves in a dangerous position.  Temptation exists everywhere in the happiest of relationships.

When someone’s sexual needs are suffering from neglect, you or your partner may rationalize that an escape with another person might be an answer. Dishonoring your vows would be another devastation to your family. So, if one of you is too tired for intercourse, there are other ways of satisfying each other.  Don’t ignore the glue that can hold a relationship bonded and keep it fulfilling.  Sexual intimacy can so easily be lost in the myriad pressures you face. Don’t let that happen.

Bargain with friends to give you time away – for a movie, dinner, socializing, a night in a motel in exchange for the same thing, or a prepared meal for them.  Get creative.

I am a strong proponent of going to bed at the same time, even if one of you is a night owl.  Cuddle, love each other and have quiet moments in each other’s arms.  After a while, the night owl can go to the TV or their work, filled with the sweet sense of your closeness.

Of course you will be talking about the needs of each of your children and staying abreast of the additional complexities for the child with an illness that doesn’t go away.  Make that time be separate from your special time together.  And, learn the best lesson of all – how to be present wherever you are!  Each moment need not be shadowed by your fears, anger, guilt.  Let the moments of your life count with your heart open and your mind focused. Being present is an art that can can be learned.  It means being “mindful” of what is happening right now, feeling it, responding to it.

If you or your partner believe in a higher power, share that.  It may give you comfort.  Share it with your family.

Regardless of beliefs, fears, tragedy,  your life situation is an  opportunity for you to rise to the best in you.  The gratification will come from seeing your children being emotionally healthy young people, having grown up in a  loving and balanced environment.  Best of all, they will get to experience first hand what it means to see the love, respect, and affection between their parents.  What a wonderful gateway into their own adult lives.

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About Paula Susan

Paula Susan, MSW, LCSW, Masters in Clinical Social Work & Psychology; specialist in Trauma and Relationships since 1982. In 1991, I integrated the powerfully transformative process of EMDR (Eye Movement Desensitization and Reprocessing). Research demonstrates that it facilitates life-altering changes more efficiently and effectively than talk therapy alone. I teach skills such as communication and anxiety relief to improve connection with others. Over the decades, I’ve come to respect how much damage even small traumatic experiences inflict on our core beliefs about ourselves and the world around us. I consider it a privilege to help my clients understand and change what has undermined their happiness and their relationships. I do it with warmth, integrity, humor, and profound respect for those who care about the quality of this small piece of time we have on earth.www.paulasusan.com

One thought on “Parenting a Chronically Ill Child & Maintaining Your Relationship

  1. Shirley

    Very informative article for couples without chronically ill children. Good tips for enhancing relationship. You

    Reply

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