Becoming the parent of a medically fragile child with special needs sets you on a journey of discovery. You unearth everything you possibly can about your child’s diagnosis. You work to establish the best doctors and therapists for your child. Eventually you’ll even catch on to how to make it on 2 hours of sleep night after night after night.
But one of the biggest discoveries you’ll make is about you. Who you really are when the going gets tough, and how important your attitude about it all can be.
Most of what I’ve learned from being Mama to a medically fragile child with special needs is good..really good. Some of it has revealed my deepest weaknesses.
What I’ve learned from being the Mom of a medically fragile child with special needs:
1. Happiness doesn’t come from stuff. True wealth can’t be measured in dollars. All your kids healthy? Consider yourself one of the richest people around.
2. Looks aren’t everything. When I open the door and you see someone who hasn’t showered in two days, what you don’t see is the fact that I’ve made it through the last two days of hell……and I’m still standing. I have no idea where I found the strength, but I’m proud of my ability to keep putting one foot in front of the other until the crisis is over.
3. I’ve learned to accept help when I need to. I’ve learned to set my pride aside and accept the generosity and compassion of others and to be truly thankful that there are those who care enough to want to help. I’ve learned the utter joy that is found as we pay forward the love and support that has been shown to us. You may not understand how important it is to know how to give and receive charity until you been on both sides of the experience.
4. I’ve learned the immense power of faith and having hope. I’ve learned that even when you are holding on with all your life to both of these, often the adversary can still tiptoe in filling your heart with debilitating fear and making it necessary to start again…from scratch. And I’ve learned that being willing to humble myself over and over again is not only important, but necessary.
5. I’ve learned the importance of taking a mental health break. That it is perfectly okay to allow yourself to not think about the thing that terrifies you the most in between Cardiologist visits. Not that you don’t provide the medical care your child needs during these times. Instead just don’t allow yourself to worry about the outcome of the next round of tests. Well, at least not too much.
6. I’ve learned that there’s a little inner b*tch in all of us. And that it’s okay to let her stand front and center when dealing with home health care companies, insurance issues, and certain lawmakers. Even if it does get you kicked off of a certain Utah Legislator’s Facebook page. I’ve learned that as long as I’m square with my Father in Heaven what others think of me really doesn’t matter.
7. I can change an ostomy bag, trach, and g-tube in the dark while half asleep. I know how to teach a non-verbal kid how to read. I can weld a suction cath with the best of them. I know the best couches at PCMC to sleep on and where the best corners are in case the couches are all taken.
8. I’ve learned that attitude is a huge game changer. Even in the midst of an unexpected diagnosis you can choose to be happy, and that as long as Reed and I stick together we can weather anything. I’m thankful to be on the side of the statistic where having a medically fragile child with special needs has made a marriage stronger.
9. I’ve learned how to mentally roll my eyes when somebody tells me how lucky Parker is to have me as his Mom. Oh, I know they mean well and their heart is in the right place. But the fact is, I needed Parker much more than he needs me. He’s the teacher. I’m the student.
10. I’ve learned extreme gratitude. I’ve learned to celebrate the little things and give thanks for being able to recognize them.
I’m wondering what you’ve learned. I’d love for you to share your learning experiences while being a parent of a child with special needs.