Having kids with special needs can be a lonely situation. Just having someone who “gets it” can make all the difference when it seems like everything is falling apart. This is why I am so excited to share with you about a new adventure called Special Needs Life Hacks I am launching with my friend Jess of jessnewland.com.
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Where It All Began
We met our sweet Phoebe in March of 2015. She was in the foster care system and had a host of medical diagnoses that made her pretty intimidating. Phoebe had no communication skills and would barely make eye contact. She could not even lift her limbs and she was completely feeding tube dependent. My husband and I knew, however, that we had done most of these medical things before. We knew feeding tubes and central lines, doctor’s visits and therapy appointments. Even though we had walked this road before, I knew that Phoebe’s situation would be more challenging. I just didn’t know how much.
I Knew I was in Trouble
One year later, in March of 2016, Phoebe’s adoption had been finalized for about a month and she was already on her 3rd hospitalization of that year. We had worked for an entire year to turn her medical situation around and it seemed like we were making no progress at all. She was two years old and not sleeping through the night. In fact, about 4 hours was a good long time sleeping for her. She was sick more than she was well and it felt like we were in the hospital or a doctor’s office more than we were home.
One afternoon my husband came home to find me hiding in the closet crying. I was completely overwhelmed and it seemed that no one understood my situation. No one could understand why I had no free time to workout or meet friends for coffee. No one understood why I felt like I was trapped in my home. That is when I started reaching out to Jess.
How I Met Jess
In 2014, I got a chance to go to a blogging conference in Dallas, TX. I bought my ticket and drove 14 hours to get there. This was totally out of character for me. I am completely introverted and I did not know a single person at the conference. I remember thinking several times that making that trip was senseless, but I also felt overwhelmingly compelled to go. Later, I realized that being at that particular conference was a complete God appointment.
About midway through the second day of the conference, I skipped a session and spent some time in the prayer room. That is where I met Jess. We talked for a few minutes, and then really never had any further contact other than being friends on facebook. I followed her journey with Zachary, but we still never really interacted.
When I decided to pull together a mastermind group of bloggers, Jess came to mind. Even though she wasn’t blogging regularly at the time, I invited her to join in and she did. Our group morphed from a private facebook group to daily voxer message.
During our daily chats about blogging and social media, we would all drop in little tidbits from our lives. It didn’t take long for Jess and I to set up a private message where the main topic of conversation was usually our special needs kids.
Why I Need Community
I need to know that someone “gets it.”
Not long after connecting with Jess on Voxer, I found myself dropping her messages nearly every day about what was happening with Phoebe. I was looking for someone who would just “get it” and understand my frustrations and my worries.
I need to know I am not alone.
I need to know that there are other parents out there who are experiencing similar circumstances to my own. Also, I need to know that I am not the only one buried in medical supplies and drowning in doctor appointments.
I need a fresh perspective and ideas.
I need the perspective of someone that understands my situation but is not so close to it that they are blinded by it. Suggestions from someone familiar with my situation can be helpful.
Special Needs Life Hacks
After much talking, praying and planning, I am super excited to announce that Jess and I are launching a new live webinar series called Special Needs Life Hacks. We will host a live webinar on a new topic every other week. These webinars will be full of information and ideas that we wish we would have known when we first started our journeys with our children. The topics will be practical and will offer resources to help simplify daily life. Plus, there will be some time and the end of each live webinar to ask questions and get some answers. You can register for the first webinar via the link below.
Register here for the first live episode scheduled for 2/9/17 at 1:30 pm EST.
You can also join the Special Needs Life Hacks Facebook community here.
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