Time is valuable.
Time is priceless.
Time is quickly taken for granted and it’s something you never get back.
Time is happening right now, right in front of you.
What are you doing with your time? Who are you spending it with?
For some people, ‘we have more time.’ There is time to ‘do it later, not right now, but soon… another time…’
But really… this individual, this family, this community going through this disease…
We don’t have much time.
Being awareness week for my boy, it’s the hardest time for me in the year probably. I go through all the emotions all at once and there really isn’t an easy way to stabilize them as much as I try. There is so much that I want to say and do and my body and my mind only go at a certain pace to be able to keep up.
I could go on and on about that time that I spent as a special needs mom looking for answers, the right Dr.s, etc. But that is for another post. The time I thought was wasted just doing those things instead of time at home that I wanted with family ended up being the most important, core time that was invested to be able to be where we are today, now with our answer. It needed to happen, it just took time. Time in the future for us is an indescribable thing that I try to explain to others. Yes, we have some time, if we need to move a date around on our schedule. But definitely not something to ‘put off for later’ and obviously not that kind of time that we would like as a whole. It’s like a countdown. A giant clock ticking in our minds for a time that we don’t know it’s set for. We don’t have a date, a year. We just have to take it day by day and keep praying we keep making it. One day at a time.
Friday May 10, 2019
It was time for our last IEP meeting at our public school. My stomach was in my throat planning this on the calendar and really realizing everything that it stood for after I got off the phone a couple weeks ago. It stood for another ‘ending’ of something in this journey. It’s the end of this school where he started in Kindergarten, the end of seeing those closest friends and peers that he has made every day, who know his routine and come up to him, hug him, and help him so much throughout his day. It’s the end of the strongest bond between him and his one on one aide that he’s had for the past 3 years. It’s the end of seeing our teachers from Kindergarten through 2nd grade, and special ed teachers to specialist teachers like P.E., Music, etc. Being able to see them in the hall every morning with smiles and listening to them have the same conversations with Owen. It’s the end of checking into the office with my favorite lady, telling her that he has appointment coming up, asking to use her stapler to make his bulletin board or just seeing her smile to brighten some of my hard days. It’s the end of Owen yelling “Hey!” to his favorite people as he walks down the hallways and the end of him going through the lunch line to get his favorite, chocolate milk.
The future IS NOW for us and it’s important for you all to know, whether you are family or friends, that the time you take NOW to have play dates, lunch dates, park dates, picnics, vacations, anything, is everything! Owen is in the phase of this disease where he can still run and play and make these memories. He can still communicate with you, understand you, and look forward to seeing you! But we know that we won’t have that forever. And I want to make it a reality and give you the perspective to know that it won’t be the same in three years, in five years, like it is right now. If there are others that are wanting to be a part of Owen’s life, the time is NOW. I LIVE for creating a life for Owen that I feel he would enjoy if he was able to grow just like others, so I believe that if we can make little things like this or time together happen within this shorter amount of time, he will be able to live a life that he loves and we can all help him accomplish so many wonderful things together!
I want to remind you that this heartbreaking disease has been also known as ‘Childhood Alzheimer’s,’ so the people he sees often and the things we do together is what he knows and will remember. I want to include all of your kids, all of his friends and all of our family to make memories with him and I am 100% open to making things work so that they can all be a part of his life if they want to! This is THEIR childhood as well, and if Owen is a close friend of his, I think it’s important to not just abruptly take that friendship away from them and keep them together in a way that they feel comfortable. Getting them involved in little things, such as Owen’s 5k, play dates or even FaceTime dates, are a good way to keep this bond and allow them to learn things along the way.
Owen’s quick updates, he is starting to have seizures and he has some dementia forming. Forgetfulness has been a bigger one that we have noticed lately on things that he is just so used to normally doing.
This was just a little weekend rattle off sipping my coffee this morning. There was nothing planned of this to structure out for you, but I wanted to get a quick point across. If you ever have any questions, I’m always here educate the best that I can to help yourself and your littles understand! But I guess the bottom line is…
Life isn’t guaranteed, friends. It’s just not.
Please don’t take a single moment for granted and appreciate every tiny thing in your day.
As a mother, I’m not forcing any relationships with Owen and others. I don’t have the time for that. If you’d like to be a part of his life, than you absolutely can and I will see you! If you choose to sit back and watch (especially as family), that is fine too. But that will be something in the future that I will not be able to control when you ‘wish you would have made the time to get together sooner.’
We don’t have the time.
Love you all. Always. And continually thanking you in my heart for everything.