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.
Twitter: MommaHopeful
says:
I learned how to pray…really pray.
I also learned how to pee while holding a child who is hooked up to a feeding pump that is plugged in to a wall. It’s a talent.
I learned to not give a damn about what anyone says—it’s how we feel, and how we love that matters most.
And, I met you…so that’s, you know, FANTASTIC!
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Amen to all of that! Feel the same way! I also learned that not very thing can be controlled, perfected or changed but I do gain some spiritual muscle trying to do it. I also learned that moms are all the same but we do have some intensive runs in our lives in which accelarated learning is demanded. I learned not to either fill my life or my son’s live with the disability and also not run from it.
I have learned all that and so much more. I have learned to have a little faith, to stand my ground. I have discovered who I am … in every essence.. I have learned to allow Lennon to guide with his needs/wants and I have learned to just be happy when I wake up in the morning because that means I get at least one more day with the ones I cherish.
Your post and the continuing comments are amazing. I have learned to go with my gut and not just trust but know that I know what is best for my child. I have learned more from Sam than I could ever hope to teach him and I need only look at him for the inspiration, encouragement and strength to keep on keepin on.
Please let me know how to do number 5?? I seem to be getting worse rather than better at that one! And the part of number 7 about reading, and definitely number 8…OK, I bow to you- you win for sure! (((hugs))) It’s been great sharing the journey with you.
I appreciate and relate to much of your thoughts. My daughter isn’t medically fragile but needs lots of extra care. We have learned sign language and more patience so we can communicate with our deaf daughter. Learning is an everyday adventure that can get old when I just want to chill and not be mom again. But I am very grateful and for such simple things. You’re right = it’s not about having the best but in being your best and supporting your children so they can be their best. I need to remember my other child too.
Hi, I stumbled onto this and felt that I could relate to you the most… My daughter Livi just turned 4 weeks and I feel horrible because she doesn’t have any major health issues due to Down syndrome. But I’ve still having a hard time adjusting and I hear and read everyone elses stories and I’m so annoyed that I’m still feeling sorry for myself!!! Is yours a son or daughter? and how old? I just keep panicing and fearing the unknown i feel like Dr. Gloom to just enjoy her good health, but then I keep telling myself there has to be more complications from it!!!! Thanks for listening! Kendra
What a wonderful post.
I have learned that heroes aren’t the famous people that many look up to. I am in awe of my daughter.
I have also learned that with high expectations, anything can happen.
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that life is not fair, really, really not fair…but God loves my child even more than I do and has a great plan for her anyway.
1. How to say, “Whatever it takes.”…and really mean it.
2. That a diagnosis is just a word and a word it just a bunch of letters and neither of those things describe how amazing Shyanne truly is.
3. How to teach others gently.
4. That it never gets easy but each day SOMETHING gets better.
5. How to pray “Thy will be done.”…and really mean it.
I didn’t realize how much I needed this “assignment” until I started writing. Thank you for making me realize how strong I can be.
Hang in there, Kendra, and keep looking for the one thing each day!