Without a Crystal Ball

Our Journey through Chronic Illness

When people find out that we have a child that has several life threatening illnesses, we are often looked at with these eyes that are sadder than anything I have seen. It kind of reminds me of when a little kid at the mall has lost their parent. Their eyes sort of well up and become red. I can see the tears build up, but the tears never actually drop down the cheeks. Their faces become flush, and they sort of lose their words. I can tell they are uncomfortable and they don’t know what to say. More often than not they say “I’m sorry. That must be so hard.”

Typically, my response is paused after I hear these words. I mean do I say to them “yeah this really, really sucks. I can’t believe my kid might die.” That never seems or feels like the appropriate response. I know there is this sentiment about kids being sick. They aren’t suppose to be sick. Having a child that is medically fragile can but devastating, but I don’t want people to think there is just doom and gloom in this household. In fact it’s quite the opposite some days. Yes, it’s hard, but it’s not the end of the world. Generally, my response ends up being, “Yes. It’s not easy, but we are doing ok.” This made me realize there are so many amazing things I have never shared about what it’s like to have a child that is sick. I know it must seem completely inappropriate for me to be happy my child is sick, but we do have some amazing benefits and things other families don’t have due to his illness. Here are 5 reasons Having a medically fragile kid is awesome I would like to share

  1. Perspective

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Chronic and life threatening illness give you a perspective on everything you will never, ever experience with a healthy child. I’ve sat next to my child on life support, I’ve held him down through tests, pokes and imagining. We have been to the ER, Urgent Care and Hospital more in 3 years than I have ever gone for myself in my life. Seeing how hard we struggle, and how difficult this fight is gives me tremendous perspective on life, the fragility of life, and the amazing things that can happen after you have been on the brink of death. I am not as worried about milestones that Von hits. I don’t stress out about ear infections, potty training, or a poor attitude. When you almost lose your child, you appreciate even the bad days. There are moments it is so incredibly hard. Von will be screaming and crying because he doesn’t want to be poked. I will have sweat on my face trying to give him another shot, and I will think this could be worse. Von could be gone. If we have to go through this to have Von here I will go through it a million times over.

2. We have amazing Doctors

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This is the part of having a medically fragile child that many families have complaints. Many families they don’t like having so many hands in the pot of raising their child. I jump up and down and cheer that we have so many on our team. Von has been blessed to have the most amazing doctors. I am not alone in this fight for him. We have 10 doctors dedicated to helping him thrive. They are all top specialists in their fields, and they are sought out from around the country. Several of his doctors have been named top in their fields and top in state. They have degrees from Harvard and other Ivy League schools. They are compassionate, they give us their cell phone numbers, let us cry to them, and they never stop helping us search for ways to help him. Is it easy having to coordinate 10 doctors? Not even a little bit, but they all work so well together and thankfully we have one that coordinates most of the care. I have so many educated and kind people helping me that I never struggle when I need assistance or Von’s condition is puzzling us. There is always someone to help us with new methods, medications, recommendations for therapy, or new technology to help him.

3. We love Von’s Therapists

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We had no idea before Von was born what occupational therapy was nor did I have a clue about sensory integration therapy. Since this I have learned about Apraxia of Speech, Dyspraxia, Oral Apraxia, Gross motor processing delays, muscle tone differences, and sensory processing disorder. We had to have extensive evaluations done to determine what areas were delayed in Von’s development. When we got the results, it was difficult for me to see that Von was very behind.  The therapists assured us this was just the starting point for Von. Once we got started in the therapy, Von’s life changed for the better. We also found that we added 4 new cheerleaders to our team. Von has two Occupational Therapists, A speech Pathologist, and a Physical Therapist. They give us the best ideas on how to help Von.  We are provided techniques, equipment and training in all areas to help Von develop. The best thing for us is we have marked evaluations every few months and we can see all the GOALS Von has met. We are working on things children 21 months old have mastered, but Von is slowly meeting goals. He would have not met any of these goals with out his therapists and their commitment to helping him development. They are kind, sweet, and they absolutely love Von. Von looks forward to seeing them every single week, and he even has a little crush on his Speech Pathologist.

4. Home Care Nursing Changes Lives

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When you have a sick child, you can qualify for nurses coming to your home to implement care. Von qualifies for a lot of hours due to the complexities of his disease. Home care nurses are a part of the implementation of the therapy, and they carry out all the doctor’s orders. While the therapists and doctors may be the Generals in this war, our nurses are on the front lines fighting and beating the disease daily. Every day they work with Von on his feeding difficulties, work on his assignments from therapy, give him a friend to play with, and teach him things he would be learning in preschool.  They help us keep the home clean because Von needs things to be clean due to his poor immune system. We have help with laundry, dusting, dishes, meal preparation, bathroom cleaning, and vacuuming. These were things I never knew were part of the package. No, it’s not easy having staff in the house. It does take some getting use to because you can’t be as relaxed. However, I can relax emotionally and mentally because there is a qualified person every day to ensure Von’s health is stable. That is the biggest gift I can be given as a mom.

5. Love

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The love you experience with a medically fragile child is like no other love I have ever experienced. I know when you become a parent you experience a profound love. However, this is different. We aren’t just loving Von, but we are fighting for Von. We are advocating for his care, his future, and we face battles that most never fathom. All of that creates a love that is strong and unbreakable. The love is the energy that keeps me going on the hard days. It is the love that fills me up when we have received another diagnosis that could potentially kill him. It is love that sustains my drive to help him have the best life possible. I love him so deeply and so immensely it can’t compare to anything I have ever known. The love is also so fragile because I know in an instant he could be gone. Even if he leaves, I know this love will sustain me for a life time. I know that if he goes before me, that the love I have for him will allow him to live on in me. It’s not a love many mom’s get to experience. I wish I never had to have this Love, but I’m so glad I’ve gotten to experience this feeling.

 

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3 thoughts on “5 Reasons having a Medically Fragile Child is Awesome

  1. Michelle says:

    I too have a beautiful wee boy who has just turned 8. He also has many life threatening issues. He cannot walk,or sit up on his own. He is tube fed and has major neurological issues. Last year he went blind too. That was devastating as he loved to watch his favorite programme, Mickey Mouse. He now has kidney failure due to staghorn calculus and we have now been told he does not have long. Your article is beautiful. It brought tears to my eyes. My wee man gives me so much love and cuddles and it is the most special feeling . It certainly is hard telling people now…. I am strong – very strong but it brings tears nearly every time. People think I am strong too but most of the time it is a facade as I have to be strong for my wee boy. I value my time with him and just want to keep him happy and to see his beautiful smiles and hear his cute wee giggles.

    Liked by 1 person

    1. Thank you so much for sharing. I will prayer for good times and a few laughs with your sweet boy.

      Like

  2. Michelle, prayers for you and your son and family. Katie as always ❤ you.

    Liked by 1 person

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