Updated: Feb 28
Welcome to my very first blog post. As always, I try to start all things with gratitude. Thank you to my friends who have encouraged my desire to write, and for convincing me that my ideas are worth sharing. Thank you for reading.
If you are reading this we are probably already on the same path: we all love and care for a little person with one or many special needs. I have been loving and guiding and searching for the best way to care for my own two littles for almost 11 years now. It's a tough go. At this point I struggle with how much I should share about my own children since they are their own people with their own need for privacy and I want to respect that, but it's my story too and in that spirit I will share what I feel comfortable about our journey together.
Together as a family we are dealing with multiple special needs: Legg Calve Perthes Disease, Sensory Processing Disorder, Severe Anxiety Disorder, Gross Motor Delay, ADHD, Severe Expressive and Receptive Language delay and we are still querying Autism. It's a lot to deal with and if I have learned anything on this journey it is this: WE (the moms, the dads, the guardians, the siblings) know immeasurably more about OUR kids than any medical professional, teacher, or consultant ever could. I have learned more from other moms journeying with me than I ever did from a professional. Yes, the professionals are valuable, but they often do not "get it".
I love my boys. It's enough, and in oh so many ways not even close to enough. Love makes the work doable, but it doesn't take away the frustration. This brings me to the point of this blog: sharing our feelings of frustration, and triumph. As my website and business grow I hope to be a able to provide meaningful services, and information, but this space is for trying to express the often inexpressible day to day journey we are on.
What has been your biggest source of frustration and triumph? It's a hard question, right?
It's hard to pick apart all the little things that happen in a day let alone a month or a year. One of my biggest frustrations has always been the lack of control I felt in my kids lives. For my eldest, I longed to take away his pain. Not being able to help with his level of pain was intolerable for me. For my youngest, I longed to understand his emotion. What was he so upset about? What was happening in his six year old mind that made him not want to live? Triumph? We're all still here. Honestly, somedays I'm just thankful for that. Everyone is still growing and struggling and progressing and regressing and continuing on.
Thank you for reading this with me. Thank you for joining my journey. I really would love if you could leave a comment here to share your frustrations and your triumphs.