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To the Chronically Ill Mommas Who Worry That They Aren't Enough

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To the chronic illness mommas out there,

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I see you. I know the struggle. I get it.

Please know you are loved, you are doing your best and you are raising your babies your own way.

I read on chronic illness boards all the time about the heartbreak mommas face when they feel as though they aren’t enough for their babies. They aren’t taking their kids to every event, every practice, they aren’t doing all the Pinterest projects and crafts, they aren’t making the exciting healthy meals. The vacations they can’t take because they have to spend that money on their own care. The events they can’t partake in because they are sick. Because chronic illness mommas are surviving. They are taking care of themselves while taking care of their children.

So next time you are worried about what your child is missing out on, think about what they are gaining:

Tenacity. We fight daily. To stay alive. To be our own health care advocates. We fight against disability stigma and our children see us fighting and will grow up knowing their mommy fought for herself as much as for them.

Compassion. Your child will be compassionate to others. Yours might be the one who sits with a sick friend later in life, brings soup to a sick coworker, opens doors for those on crutches. You are showing your child that humanity takes compassion and love and they will learn that from you.

Acceptance. My daughter has a friend at school who has a feeding tube. My son has friends with allergies. My kids accept these differences because I’m different. They are being brought up to know that we all aren’t perfect healthy beings and that’s OK.

Education. Having a rare chronic illness means explaining how and why I am on crutches when I see my kids at school. It means explaining to others why I have a disability placard when I “don’t look sick.” My kids see my patience with others education them on why I am the way I am. My daughter even shared Ehlers-Danlos Syndrome Awareness Week with her class last year and did a presentation on my illness. She is helping to teach the next generation and she’s 10.

Patience. Mommy is often slow. Mommy often needs help doing things. This means patience from the kids. They don’t even realize they are doing it but they are so helpful and mindful of what Mommy needs; it’s already there in their hearts.

Respect. For parenting, for adulting. My children see me on good days and on bad and they know I do what I can when I can. And for that they respect me. They know how much it takes out of me when I do what I do. They know how much of of a toll it places on my husband when he has to pick up the slack. That kind of respect we show each other will rub off on them and they’ll know later in life how hard it must have been when they feel sick and can’t do it all.

What matters. My kids know I love them. I do what I can when I can. They see me in wheelchairs and in the bathtub and sleeping on the couch. But they see me push through pain. They see me there when they need me. I may be in pajamas picking them up from school but I’m there! They can’t vocalize it yet, but they will know later in life that being there, being loved is what mattered. Not the fancy Valentine’s Day crafts for school but the showing up and not forgetting to say I love you and give hugs every day. That is what matters.

Love. They will look back in 20 years and tell someone, “My mom was sick but she loved me fiercely. She did what she could when she could.” That kind of love can’t be bought or taught, its shown through our actions. By letting your child know you love them and you are there for them even if you can’t do it all for them, they will grow up knowing they were loved, more than anything in the world. And isn’t that all that counts?

Lead photo by Thinkstock Images

Originally published: January 31, 2017
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