We wanted to share a great post from Bridget Colby (HLH/BMT mom) about the initial steps in dealing with your child being diagnosed with histiocytosis or pediatric cancer.
In looking back at how our family coped with our daughters diagnosis of HLH there were things we used to cope. I wanted to share them.
Some simple steps to think about in dealing with the reality of your child being diagnosed with a devastating illness.
Step One: Remember to breathe. Sounds simple, but when things are going bad you will probably find that you are holding your breathe alot.
Step Two: When things are not going so well, the present is this minute. Right here, right now. As things get better you can relax and move to hour by hour. Then day by day. Even rollercoasters have there end. Just hang on and try only to get through one dip at a time.
Step Three: You remember things that comfort your child. What about yourself?
Bring things to the hospital that you would find at a day spa, or something you would take on a romantic weekend. Things that make you,and only you feel better. Take your pillow, a favorite blanket, comfy pair of socks, hand cream and put your feet up once in a while.
Step Four: Take breaks. When you can take a short walk outside. This will go very far in helping to recharge.
Step Five: Say "Thank you!" to the offers of help and accept them!!!!! You are not in this alone. You need these to get through this. Do this now so you will have reserve if something bigger happens. Let family and friends help you prepare for homecoming,make meals, do laundry or whatever they can.
Step Six: Choose your battles. Accept what you can. There will be times when there is just no answer, don't waste your energy trying to change that. There will be people that you will not get along with. Ignore them and save your energy for where it counts.
Step Seven: This is the new "normal". Nothing will be the same from now on. The good thing is that the new "normal" will start to feel okay, eventually. You have all been changed in many ways.
Step Eight: Take time everyday to be the family that you are no matter what is going on. Continue to strengthen the foundation you have built. This is what will hold you all up in times of trail.
Step Nine: This too may sound strange but try to laugh. It is one of the best ways to combat stress. I may not seem like it now but you will be able to laugh again. You will understand this with the first "She made a poo!!" happy dance and song.
Step Ten: You are not alone. Don't try to hold everything inside. There are many people willing to help,listen and get you through the moments that you will feel at your lowest. Reach out.
These are just some things to think about.
What are your coping tools?
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