Without a Crystal Ball

Our Journey through Chronic Illness & Autism

We are a sisterhood that we never imagined being a part of and never wanted to be in. Yet, we are a sisterhood united in caring for our children and helping them meet their highest potential. Most of us are stuck at home, unable to hang out due to the demands of our children’s needs. Our relationships are forged in online support groups, through non-profit organizations, and via online blogs and articles. We stand united that our kids deserve the best resources, services and care. Yet, many of us are stuck in a broken system where insurance dictates what our children will receive. We hope for the best but don’t know what the future holds in a world that wasn’t built for our kids.

When we are struggling, we try our best to lift one another up, offer suggestions, resources and tips for what has worked for us. There is no handbook or parenting book about raising a child that is medically fragile. Most of our children don’t fit a mold. All are uniquely their own, and many have multiple diseases or disorders that are so rare most doctors have never seen. When no one hears our child, we are their advocates. We yell, scream and fight for everything we know they deserve. Early on we realize, with a heavy heart, that the world we live in isn’t built for our children. Each and every day we are fighting someone about some aspect of their care. It could be a doctor, a nurse, a therapist, an educator, or an insurance company. Every day we fight and launch battles for what we know our children need to thrive, and sometimes our fight ends in defeat. We cry in our bedrooms at night. In the dead of night, many of us lie awake paralyzed by the fear of the unknown. All we want is to make our children not have to fight so hard to simply be.

Sometimes we pass one another as we rush from appointment to appointment. We chat in the waiting room of therapy, and discuss the newest techniques, education or options to help our kids. We see one another in the hospital and clinic waiting rooms, and sometimes chat about our child’s diagnosis. But all we really think is when we see each other are “these are my people.” We are the group that GET IT, and we live in a  world that doesn’t seem to understand it. Why would anyone have to GET this world if they didn’t live it. These sacred moments become warm spots in our hearts because we know there is someone else out there living what we live each and every day.

When new mom’s enter our world, most of us stand united in trying to offer support in any way we can. We know this world will chew you up if you don’t have a good guide along the journey. Mom’s with older children mentor those of us that are new. We learn from them, and learn what has worked and hasn’t worked for them. When we see another mom struggling with choices, we offer our experience about how this has improved our child’s life. Most of us have been through dangerous surgeries, expensive testing and have enough medical equipment in our homes to open a small hospital. It is a community that simply wants the best for our children and above all else – we want our children to live.

Every day most of us are fighting a battle against a disease that we will never beat. Most of us know the very real implications of what can happen to our children at any given time. We know that nothing in our world is to be taken for granted. Birthdays for our children aren’t a given so each and every year it is a CELEBRATION. Every year that passes and our child has survived, we have won a small battle.  In this very fragile world we live in, we have been able to see the true meaning of love. Many of our children have been on the brink of death and come back, and we know that no matter what love is the only thing that can keep us going. We know that our love is what keeps us going on the days that feel impossible. Love is what will keep us moving on the days where the news at appointments is less than positive. We never never give up on our children, and we will never stop fighting for their well being.

We are a sisterhood that has come together by accident. Our children are what unite us, but the beauty of this community is that we have seen life in a way most people will never experience. Our ability to help one another, help our children and sometimes try to help ourselves is a testament to how strong we truly are. Most of us don’t feel strong. In fact, many of us feel we are coming apart at the seams. However, we unite together when one is struggling. We lift each other up and remind one another it is OK to cry, feel defeated and be sad. Yet, we also remind each other we have to KEEP GOING. No matter how hard our journey is – we have each other. Our path is full of debris and obstacles most parents will never experience, but we navigate it with grace and courage. We stand together as we move through our journey.

This would be impossible to do alone. While we may not get to spend time together, have play dates, and most of our relationships exist online – we are the village of Mother’s with Medically Fragile Children. It’s the best Village and world I’ve ever been in. I hate being here, but I don’t want to be anywhere else.

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4 thoughts on “The Sisterhood of Mother’s of Medically Fragile Children

  1. I LOVE this article! I wish the community you talk about would have been around 21 years ago when my son was born with hypoplastic left heart syndrome. It wasn’t until my son was two years old that I had dial-up Internet access and by then he had survived two open-heart surgeries and we were starting to be able to live a more normal life — well, normal for us. I love the fact that we do have online communities now to be there 24/7 for moms who are stuck at home feeling lonely and scared. You did a great job with this piece. I will be sharing it. 🙂

    Liked by 1 person

  2. Reblogged this on She believed she could and commented:
    One of the most perfectly and beautifully written posts about motherhood for “us moms”

    Liked by 1 person

  3. Absolutely beautiful!! ♡

    Liked by 1 person

  4. Gayle says:

    Absolutely thrilled you all have each other for support!!! I have a 27 year old son who has common variable immune deficiency AND ciliary dyskinesia. It was hard to find doctors to treat him and impossible to find other parents to talk to. It was a lonely journey. Be kind. Take care of yourselves. Find reason to smile every day!

    Liked by 1 person

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