Do What Is Most Essential – Tips for TSW Parent Caregivers

Care for your heart, your mind, your spirit and your body in any way you can through this time.

Love your child. Keep loving them. Your love is the greatest gift you will ever give them during this journey.

Ask for help. You will not ever look back and say I wish I had done this myself.  Grow a loving and caring circle of support for your child.

Trust your instincts.  Ask questions. Work with supportive medical providers who you trust.  

Rest when you can.  Sometimes recovering from sleep deprivation starts with one quiet moment.  One minute outside in the sunshine.  Watching something that makes you laugh.

Write a mantra of things to say to your child when the hardest times come – during the middle of the night, when sleep deprived, during the terrible nerve pain and itch, blood on the sheets, endlessness feeling that is trust me going to pass. Put it on the wall.  Read it when you are not the version of yourself you want to be.  Write one for your child and one for you.  The pain will pass, the isolation will pass, the suffering will pass.

You will need help. Reach out to find a counselor.  Find support for your family.  Leave your house and know that your child will be okay.  Even if okay is had a really hard time with someone else there to help. Respite for you means wellness for future you, their caregiver and opportunities for growth as your child navigates dealing with pain with the support of others.

Check in with the quiet warriors in your house. Your children who are not going through a health condition.  Ask them how they are doing?  Tell them how proud you are of them.  These warriors are the ones who will help you hold onto normalcy and bring laughter into painful places.  They are the unsung heroes of TSW.  Give them your love through a ride in the car just you two to get a treat.  Being home with a sibling in TSW means they will exist in a waiting place, in anticipation of their sibling’s pain and suffering.  Help them by seeing them and hearing them, not for hours each day, but for moments of lightness and love.  You are already doing it.  

You give every day.  Take care of you.  Take back moments as your child heals to enjoy every wish one at a time.  

Help your child warrior feel heard and seen. Write down their symptoms and add new ones. Teach them how to share their pain and itch in new ways, like with a numbered pain scale where they can watch the numbers change over time. 

Distraction. Keep books and trivia cards nearby.  Ask unexpected questions while your child is dealing with nerve pain and itch.  Watch funny videos and let them play video games.  Let them sleep when they need to sleep.  Take them outside when you can and believe in the wisdom within our bodies that knows how to heal every day.

Understand that you will change.  You will come through this a core version of yourself.  You likely will have shed layers of identity and reformed into someone with a forever changed view of life and happiness. Consider the rest of your life a journey to heal, that time will bring you peace.  You will have visible and invisible wounds as a caregiver, like your warrior child and warrior family.  Your wounds will teach you more about life than anything. Be where you are.  You will get to where you want to be and it is okay to grieve and it is okay to not grieve.  Each day will bring you something new as your child heals.  Keep believing in every dream.  

Talk to friends and family you trust.  They will step forward for you.  There are some who can not and will not, but save your reserve for those who do.  Lean into your guides.  Let them hold you together on hard days and feel their love around you.  Keep going.  Someday you will look back and see how you grew stronger with each new day.  And someday your child’s health and strength will outpace your wildest dreams.

By Jolene MacDonald

jmacdonald@itsan.org

This post is dedicated to my daughter, Isla who taught me that being a Mom means you will make many mistakes and being a Mom means you will do everything you can to start over.  To recover the moments you missed and lost and wished for.  And you will.  Thank you for sharing your voice and being my girl.  Thank you for being indescribable unless there is a word for what is more than a miracle.

This post is inspired by my son Max’s strength of spirit, mind and body to come through the hardest condition I have ever known in my life.  We hold onto every single moment of health because of you.  We know that anything is possible because of you. You are my first miracle and your life has just begun.

This post is with love and thanks to Max and Isla’s dad, Jack.  We made it through as parents.  We parted ways as a couple but we will always be parents who love our kids with all our hearts.  

This post is because of the family and friends who were pushed far past their comfort zone during the hardest years of TSW and who leaned in.  For the healthcare providers who stood by us and believed in healing from within.  For the school and educational team that carried us through the hardest years with care and consideration for every challenge we faced.  This post is for you and your child and I am here sharing it because of ITSAN.

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