I can’t even believe that Luca will be seven years old tomorrow. Seven years of ups and downs with this little guy have really flown by. The saying that the days are long, but the years are short is SO TRUE!
Although it’s difficult to remember what life was life before Luca some days, I’m certain is was much less stressful….even if I didn’t realize it at the time š Raising babies and children is HARD, there is no question about that. Zero. Add a child with special needs into the mix and it’s that much more difficult. What I do know is that over the last seven years, I’ve really been able to pull myself together and taking care of Luca is now second nature. I don’t think twice and when things happen with him and certainly don’t panic like I used. I can remember his first seizure like it was yesterday. (I was not at all prepared for that!) His Infantile Spasms were barely noticeable to the untrained eye, but his obvious seizures were not something I was prepared for. Now, they don’t happen often, but there is no panic when they do. I know what to do and I do it without thinking. Familiarity with them is something I wish I didn’t have, but I’m thankful for it because much life is much easier that way!
Reflecting on the past makes me realize how far family has come. Greg and I are much more knowledgeable and Luca is thriving. If you would have asked 5 or 6 years ago what I envisioned for Luca, I would not describe him as he is now. When he was first diagnosed, we didn’t even know how long he would live. Since then, he’s learned to do SO much! He started crawling at age 2.5, walking at age 3.5 and learning to communicate basic needs via a communication device when he started preschool. There are days that he actually runs and it literally makes my day. His run isn’t typical, but it’s so cute and he’s getting so fast! Who knew that would be possible!?! He is so awesome and I’m not saying that because he’s mine. He really is such an inspiration to everyone in his life. Who knows what else he will learn, but I’m sure it’s going to be amazing. He loves to learn new things and no one is more proud of him than himself! He claps for himself and the look that crosses his face when he accomplishes something shows the deep self-satisfaction that he feels.
Here is what we can all learn from Luca:
- You don’t need to have it all, you just need to have some
- Take all the naps you can, they keep you happy
- Who cares what everyone else thinks, he is oblivious to feeling the need please anyone other than himself
- Smile every single day
- Hard work pays off, NEVER give up
- Appreciate the small things
- Anything is possible
- You can have your cake and eat it too!
Here is an awesome slideshow recapping the last 7 years! Walking down memory lane to put this together was awesome. (Note to self: look at the millions of photos you take more often!!!)
Last summer, I started Loving Luca Foundation as a way to give back to this special community. I’ve connected with some amazing people, learned so much and have felt the pure appreciation from some of those we have helped. We are still small and growing, but we are doing what we can and it feels SO good inside. The connections and the friends that I’ve made have been incredible. My next goal is start online meetings for all of all over to get together to “hang out”. This world can be incredibly lonely and isolating since not many understand and/or relate to it. I can’t wait to grow and to watch Luca’s legacy blossom into something so positive. His spirit is strong and others WILL learn from him – just watch! He lights up my life and I like pass a little of that light on to others who may need it.
Happy birthday to Luca! I can’t wait to see what this year holds!!
Loving Luca 