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 sucks. I can’t believe my kid might die.”
That never seems or feels like the appropriate response.
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.”
Even though our journey is hard, I 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 entirely inappropriate for me to be happy my child is sick, but we do have some fantastic benefits and things other families don’t have due to his illness.
Here are five reasons Having a medically fragile kid is awesome I would like to share
Chronic and life-threatening illness gives 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 giving me a great perspective on life, the fragility of life, and the fantastic things that can happen after you have been on the brink of death.
When you almost lose your child, you appreciate even the bad days.
There are moments it is so incredibly hard.
I am grateful every day that he is here.
He is thriving despite so much adversity.
I no longer sweat the small stuff.
2. We have amazing Doctors
My son has been blessed to have the most amazing doctors.
I am not alone in this fight for him.
We have over a dozen 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 the 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 over a dozen doctors?
Not even a little bit, but they all work so well together, and thankfully our Complex Pediatrician takes care of all of that for us.
We have so many educated and kind people helping me that I never struggle when I need assistance.There is always someone to help us with new methods, medications, recommendations for therapy, or new technology to help him.
3. We love our Therapists
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 his delays in development.
Once we got started in the therapy, his life changed for the better.
We also found that we added four new cheerleaders to our team.
Von had two Occupational Therapists, ASpeechh Pathologist, and a Physical Therapist.
They give us the best ideas on how to help him.
We are provided techniques, equipment, and training in all areas to help him develop.
The best thing for us is we have marked evaluations every few months, and we can see all the GOALS he has met.
He would not have met any of these goals without his therapists and their commitment to helping his development.
They are kind, sweet, and they absolutely love him.
4. Home Care Nursing Changes Lives
When you have a sick child, you can qualify for home care nursing.
My son 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.
They give him medication, bathe him, play with him, comfort him, and provide suggestions on how we can make improvements in his care.
No, it’s not easy having staff in the house.
However, I can relax emotionally and mentally because there is a qualified medical professional in our home to monitor his care.
That is the greatest gift I can be given as a mom.
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 don’t just love him, but we are fighting for him.
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.