Battles against terminal illness, anxiety, and life!

The emotional highs and lows of friending a family that has a child with a chronic or terminal condition can feel equivalent to be strapped into a roller coaster ride that never seems to end. Just as they are coming off of a really good spell, things take a turn and they, and subsequently you, are tossed back into their drama.  It’s heart wrenching to watch them go through so much heartache, inspiring to see their strength, but at times also emotionally draining for you as well.  Balancing how to be a good friend to them with the emotional health of you and your family is a challenging task.

That’s at least how I’m guessing it must feel.  Seeing as I am the one with the child who has a progressive and terminal condition.  I am very aware that being our friend may not always be easy.  Most people want to enjoy life in a simple and drama free way.  They don’t want to deal with the emotional highs and lows of others. Their plate is full enough.  It’s too much to sign up for.  Yet, there are those stand out people who look beyond their own and see that it isn’t all drama.  They reach out and offer friendship in a way that is touching.  They seem to understand that you are a family that likes to laugh just as much as the next.  They look beyond the disabilities and see the beauty in your child.  They do understand that being your friend means having to face some sobering realities about life, and are ok with hurting right beside you. They somehow understand that you didn’t see this curveball in life coming either, but just because it has doesn’t make you any less worthy of genuine friendship.  Those very people are the ones who ask, “How can I be a good friend to you?”

I will dig deep and think about it.  It has me a bit nonplussed.  Friend as a verb and not just an adjective, what more could a woman ever ask for?  Ok, other than a healthy child and to win the lottery!  You see, raising a child with a terminal illness means not truly seeing the light at the end of the tunnel.  It’s more like knowing you will be thrust into darkness, and hoping that your internal light will shine through to help you see beyond it.  It’s not easy.  Parenting under these conditions takes stamina, strength, courage, endurance, and the ability to realize that you can’t go it alone.  That’s where friends come in, and are we ever so thankful for the amazing ones we have!

We really are just like other families, but our frustrations are just a bit different.  Your child might have given you a challenging day by throwing a huge temper tantrum in a store, refusing to do his or her chores or homework, or simply decided that they were going to push every button you have.  Ours very well may do those same things too.  Other times, they may find themselves in the hospital or facing a nasty health scare.  What makes you feel better on those days?  A glass of wine?  A hot bath?  A good cry?  Venting on the phone with a friend?  A sweet email, text, or phone call?  Coffee out with a friend?  Those same things apply here.  Simply knowing that people care makes such a difference.

Ms. J, a dear blogging friend of mine, wanted to know what long distance friends can do other than tell us they are thinking about us.  Excellent question.  I’ve thought about it since she asked. It’s trickier, and often I have wished I could drop off dinner to her house, met her for a coffee, or invited her over for a glass of wine.  Alas, we have many miles separating our homes.  Knowing you care lifts my spirits.  A funny story, a handwritten note, a picture drawn by your children, a phone call or email, all help.  That human connection, that community rallying to support each other allows us all to feel connected and loved.  I wish to do those same things for those that I care about.  The other day I searched high and low for a friend’s address, because I genuinely wanted to order her pizza.  I know her day had been tough.  I found it the next day, and was seriously bummed.  Sometimes, what I really want is to hear about somebody else’s day.  I want to laugh that your boyfriend/fiance/husband decided to do the laundry and turned it all pink.  I want to joke with you about your daughter’s new desire to dress herself in stripes on top and flowers on bottom.  Connecting, being there for each other, understanding that highs and lows come in everybody’s life but take different shapes, that’s what we need.  Shoulders to cry on, hands to hold when we need the extra strength, and ear to listen, and the understanding that we are there for you too help.  We may be going through something here, but that doesn’t mean we don’t have enough love, respect, and strength to help others too.

Much love,

Becky

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Comments on: "Raising a Child with a Terminal Condition" (5)

  1. You write so beautifully and from the depths of your soul. I truly admire your strength and wisdom. Sending a cyber hug your way.

  2. Deanna Achilles said:

    Thank you for sharing this! Worded very well and all of us dealing with A-T know exactly how you feel. We all need friends even more than typical moms.
    Much love and prayers!
    Cyber hugs!
    ~D

  3. It’s a pleasure to be your friend. I wish we lived closer.

  4. samantha dzembo said:

    Wonderfully said Becky!

  5. Joy Pierce said:

    Thank you for sharing your thoughts. I am a friend of an AT kid and often wonder what to say or do. Your blog has inspired me to make every effort to be a better friend. May God bless you and your family and give you strenght.

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