Social media can either be my best friend or my worst enemy.
Looking through old memories can bring back so many lovely times and show just how far Ethan has come, or it can show skills that Ethan used to have and now doesn't.
Life is so rocky here, you never know what you're going to get dealt next. We live life a day at a time and treasure every moment, but it's heart breaking to see Ethan loose so many skills that we spent hours encouraging him to gain. Every little milestone is celebrated and it's always so exciting to see Ethan exploring his body and using it in new ways. I'm always mindful that the new skills won't stay with us long. Some skills do, but a lot over time fade away.
Over the last 6 months I have found social media both a challenge and an encouraging place.
It has given me support through such a hard time, knowing people who are in the same boat as us providing that level of understanding that you both just have and know how hard things are.
I've also struggled with seeing the development of all our gorgeous friends' children. Having time to blossom and learn new skills is so encouraging to see, but it also brings back painful memories of the skills Ethan learnt but now doesn't have any more. This is something we face on a daily basis. There's no explanation of what causes these regressions in skills, but I'm pretty sure it's due to his memory which has been affected due to his seizures.
I've always kept a positive spin on everything I post about Ethan, because that's how we are with him. However it's hard to always remain positive about everything when your child faces so many barriers and battles to achieve all the small things.
We will always rejoice in everyone's achievements around us because we know, that just like us, they are also worrying about these skills disappearing and not lasting. We all stick together and this is the lovely side of social media. All in this together supporting each other no matter what.
Just like our lives, social media is the same, but for the most part it's good and that's the way we like it!