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24 Ways Having a Child With a Chronic Illness Makes You Aware of Your Heart

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They say having a child is like putting your heart on a pair of legs and letting it walk around outside your body. That’s how it is with my son, Joshy, who has a chronic illness.

And as he grows, my heart grows and breaks with everything he goes through. These are the ways having a child with a chronic illness makes you very aware of your own heart.

1. When you see your child lying seriously ill in a hospital bed and he still smiles and says thank you to the nurses for helping him, your heart swells.

2. When you’re at a major hospital that cares for children for a whole state and every second person knows your child by name, your heart breaks a little bit.

3. When your child gets up and takes a step after fighting for his life and being bedridden for months, your heart glows.

4. When someone comments about the lovely and huge collection of teddy bears your child has and each one symbolizes a surgery or life-threatening event, your heart breaks a little bit more.

5. When your child visits other sick children and brings them toys and games to play with, your heart beams.

6. When your child swallows a long row of tablets three times a day — so many you would swear he rattles as he walks — and he doesn’t complain and turns it into a prayer, your heart smiles.

7. When your child’s room looks more like a hospital room than a bedroom, filled with machines and medicines and therapy equipment, charts and calendars and lists all over the walls, your heart squeezes tight.

8. When you watch your child do physical therapy and see him persevere despite the pain in his face, your heart is full of admiration.

9. When you spend hours doing research into diseases, medications, therapies, doctors and services and fight with bureaucracy for just that little bit of extra help with finances or services or medical attention, your heart cries with frustration.

10. When your child lies still and lets you do therapy and procedures to his body meant to help him and yet cause him immeasurable pain, your heart is touched by his strength.

11. When you see a huge plane flying low just ahead of the car and watch as your child peers in the general direction and nods his head and smiles to please you even though he can’t see it at all, your heart cracks some more.

12. When you see the reaction on your child’s face after he hears you whisper “I love you” for the first time after getting his hearing aides, your heart melts.

13. As you sit by your child’s bed every single night of his life and listen to his breathing, ready to help him whenever he stops breathing, and you look at his peaceful face, your heart breaks.

14. When you see your child watch the same DVD over and over again and he knows all the words, even in Arabic, and he interacts and joins in with the show, your heart smiles.

15. When you see other children running around and playing, horse riding, having parties, seeing friends, going to movies, going to school and doing all the things you know your child is missing out on, your heart aches.

16. When you see your child finish a bowl of food and he was strong enough to feed himself, your heart cheers him on.

17. When you see your child go back into surgery for yet another operation and don’t know if you will ever hold him in your arms again, but you sing him to sleep, tell him you love him, kiss his cheek and walk away, your heart breaks into pieces.

18. When it’s Mother’s Day and your child doesn’t know or understand so there are no flowers, no presents and no breakfast in bed, but he’s with you and persevering, your heart is filled with peace.

19. When you sit on the floor of the shower in the middle of the night and cry for your child, muffling your sobs in a towel because of his pain, for it’s never ending, for all he has missed out on and will miss out on, for all the frustration and anger and hopelessness and fear, your heart shatters.

20. When your child curls up with you on the lounge to watch his favorite movie and you feel his head on your shoulder and his breath on your cheek and his warmth in your arms, your heart fills with joy.

21. When the very first thing that always goes into the car is a huge file filled with medical information and history of your child and you have bags for the hospital permanently packed and sitting at the front door ready to go, your heart aches.

22. When you see your child open a parcel or a card or get a surprise visit or Skype from someone reaching out to him, your heart fills with joy for him.

23. When you talk to a specialist and he tells you the disease has spread and there is nothing more that can be done, your heart begins to squeeze so tight you think you will never breathe again.

24. When your child looks you in the eye and tells you “I love you, Mommy,” your heart is so filled with love and thanksgiving that it overflows, filling in all the cracks and pulling all the broken pieces back together.

Yes, having a child with a chronic illness makes you very aware of your heart.

Toni Mitchell the mighty

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: July 9, 2015
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