Adrenal Insufficiency, Apraxia, Autism, Blogging, Breastfeeding, Ehlers Danlo's Syndrome, Grief, Medically Fragile, Mental Health, Mom, Mom life, Parenting, Post Traumatic Stress Disorder, Sensory Processing Disorder, social, Special needs parenting

A Letter to All my Online Friends Fighting To Save their Medically Fragile Children

Hi Friends,

The past few years, I have had the pleasure or maybe displeasure (I mean who wants a child that is chronically ill), to meet so many of you on Facebook support groups. We have cried together, laughed together, and we have been to the darkest places together. No one else knows better the path I am on than you, and I am so grateful for the love, understanding, grace, and help you give to our family.

When my son was diagnosed at 3 months old, I knew not a single person with his disease, and I had never heard of the disease. Our doctors pointed us to an organization that had a web page. On the web page, there was a link to their online support group. This was our first jump into the Medically fragile world. As more diagnosis popped up, I found more and more pages. Soon I was collecting “friends” I had never met in person, and many of these people were people I relied on in my most difficult times. They lived all over the world, and many of them had children as complex as my son, and sometimes their children dealt with more. However, no matter the differences, there has always been this authentic connection of really just wanting to help one another.

As the years have moved on, I am collecting more and more friends. Many of the friends have been with us since the very beginning of our journey. Our friendships are absolutely real. It is so hard to explain to anyone that isn’t in this world. We are so isolated from the real world. We are stuck in our houses, at hospitals, at clinics, or shuttling our children to therapy. There is not much time for socializing, and most of us have struggled to find friends in our community that get what we are going through.

I want you to know every single day that I can count on you, I know that it will be another easier day for me. When my son’s g-tube is misbehaving, he’s not tolerating feeds, he’s having trouble sleeping, his asthma is acting up, he is out of sorts from sensory overload, or he’s simply totally fatigued from chronic illness you are there. I know I can reach out to someone in each group that will hear me, understand me, and has been there in my shoes. There is an incredible peace of mind that comes over me knowing that I am not alone even if you are so far away from me.

I’ve learned how to vent my son’s g-tube, how to check his blood sugar, what to look for in an adrenal crisis, how to advocate for my child, and I’ve found services for my son I never knew existed. All of this is because of you. You have each provided me something that I have been able to use to help my son. This has helped me learn to advocate, given me a voice, and has taught me that our work is not to just help our own children but to help one another.

When we are new to this world, we have the mother’s with older children take us under their wings. We are taught the ins and outs about just about every single aspect of managing our child’s care. As our children grow, we use the skills provided to us by our mentors and help new mothers. This is a cycle, and we are all repeating it over and over. I think of how beautiful this is, and it actually brings a tear to my eye. None of our children came with instruction manuals, and most of our kids are medical mysteries. However, you never doubt me. You always make me feel sane and remind me that doctor’s don’t always know everything. I have learned our children are unique and their bodies don’t follow a blueprint.

I’ve seen your fight, strength, resilience and I’ve witnessed you all crumble to your knees. Yet, every single day I watch you all wake up and keep on fighting this battle. It’s exhausting, it’s overwhelming, and most days we all feel like giving up at some point. In my lowest moments, I know I can find one of you. I can pop you up on a chat and tell you what is going on. Instantly I am reminded that I am not alone, I am given advice on what I can do, and I find a way to pull up my big girl panties and quit crying. I don’t think there are adequate words that can be used to explain to each of you how important you are to me.

My journey would be cold and lonely if you weren’t there. I would have no one to talk to, relate to, and I would have no way of learning or understanding how to help my child. We are an elite group of mom’s that have actually been taken places most will never understand. Most of us could easily have medical degrees at this point with how much we know about the human body.  The fact that every day I am aware that there is someone that can help me makes this entire journey that much more bearable. I don’t leave my house a lot, and our life is really dictated by how my child is doing physically. Many of my only conversations with people these days are online. Sometimes my only interactions for weeks at a time are online due to his health.

I use to envy the mom’s I saw that went out and had a girls night out. I use to feel really sad that I was missing out on all of it. It pained me to think my social life would never be the same. Yet, all of you have changed that perspective. My mission and sole purpose in life right now is caring for my child, and I know that is your purpose too. We don’t have the ability to get out the way other families do, and instead of being angry or resentful, I am just grateful I have found my tribe of mom’s in the same place of life we are in. Thank you for always being there for me. Thank you for teaching me. Thank you for mentoring me. Thank you for laughing, crying, yelling, screaming and whining with me each and every day. Thank you for all the things you do for me that you don’t even realize. Thank you for being my tribe, my village, and my friend. We may never meet in person, but you will always be close to my heart. Thank you for being my person when no one else got it. Thank you for being here.

With Love,

Another Mom Fighting for Her Child’s Life

 

 

 

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5 thoughts on “A Letter to All my Online Friends Fighting To Save their Medically Fragile Children

  1. What a nice post.
    Girls night out doesn’t bother me as much as seeing posts about kids graduating and kids getting new jobs. Knowing my daughter has been in the bed for 3 years. She doesn’t want me to post about her on my blog since my blog was created for completely different reasons. And she is very private. But that leaves me cut off from human contact and really no one to give me moral support as I have been taking care of her, lost, exhausted, not knowing what to do next with her, etc. so your letter is very comforting.

    1. I don’t speak or write very well English (I’m from Spain), but with the Google translator I write to tell you that to me also when you want you can tell me in private your things, that I think that at my age something will be able to help you. What do I have to do to give you my email.

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