People constantly say to me, “Courtney, I have no idea how you and Steve do it. I would be a mess.” Those words come when talking about our struggles with Ella or the fact that we added a third baby to the craziness that is in our lives.
I have said it before and I will say it again, when you have a special needs child you just do. Any good parent loves their child unconditionally and will always do what is best for them. It doesn’t matter if they are a prodigy, on a “normal” track of development, or delayed in any way. You fight hard to get them what they need. That basic concept doesn’t change.
That being said, raising a special needs child is stressful. The emotional rollercoaster I have been on this week alone has got nothing on the fastest, scariest rollercoaster ever built. When it comes to the health and well being of a human you created, the medically unknown is the scariest thing in the world. It leaves you feeling helpless and overwhelmed.
When you have to rely on medical professions to oversee the care of your child on an almost daily basis, and you see little improvement under their care, you begin to question if they are giving standard answers and just checking things off a list, or really thinking outside of the box. Don’t get me wrong, they definitely know more than this mama bear, but Ella is medically complex. I would hope they are well informed physicians but are they the right ones for Ella’s care? Her medical woes are a riddle wrapped in an enigma. What we need is a doctor(s) who is also an enigmatologist.
After recurring in school episodes, changes in medication doses, multiple EEG’s, and more questions than answers, it’s time for fresh eyes and ears. Our Boston trip could not be coming at a better time. The constant school calls and scheduling with different doctors is draining. It’s nice to now have a team who can do that all for me. Just tell me where I need to be and when.
I am here to tell you that as a parent, it’s okay to question things you don’t understand and seek answers from wherever you think you can get them. If something doesn’t feel or look right, it usually isn’t. That goes for almost anything. Medical. Academic. Social. It doesn’t matter. People will try and convince you certain things are “normal”. If your mama gut is telling you otherwise, go seek answers. The best thing that can happen is someone tells you your crazy and you leave feeling better. Don’t wait it out, and if you don’t feel confident in the answer you get seek a second, or even third opinion.
I spent my morning with Ella today. She was frustrated and doing everything she possibly could to try and get the netting and probes off her head. She screamed louder than I have heard her scream in a long time and it broke my heart in a million pieces. I know she wont remember most of it but I also know I won’t forget.
Steve came to the rescue, and to be honest, he’s a big part of the reason I am able to carry on each day and do right by my children. We balance each other well. My unsolicited advice to you all, find someone who will pick you up every time you fall and don’t ever stop fighting for your kiddos!
Follow our daily triumphs and struggles on Instagram at
Our Special Needs World 
❤️❤️❤️❤️❤️
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