Praying It's Not Just 'A Stage'

If you know me, then you know that I would rather be writing my heart out rather than being in front of a screen talking on video all of the time. Actually, I wouldn’t mind it as much, but I just don’t have the extra hands or time if I’m being honest. So thank you to everyone who reads our blog, our posts, and my heart string posts whenever I’m able to sit down long enough to concentrate on something I’ve wanted to write about.

As much as I thank everyone from the bottom of our hearts for being by our side and showing your support through Owen’s Story, not only daily, but especially on awareness day, there is a part of me that feels I need to write about something a little more as this month is almost over. 

I know that we are still within the first handful of years of diagnosis. It’s still ‘new,’ as some would call it. There is still ‘shock’ in a way of what is happening right in front of us every day, and I sense it especially from others surrounding us, including our tribe. It’s hard to get a handle on emotions and thoughts in this process and you may wonder how you ‘think’ you should react around us as a family or be able to show your support. Some of you may think that you don’t want to hurt our feelings even more than what we are going through, so you choose not to speak about it much or even ask questions that you have. Some of you may think that you don’t know how to express yourself when you are directly affected emotionally by Owen’s Story. It’s ok, we get it. BUT I will tell you that I am scared for other reasons as I think about the future, other than the obvious coming from Owen’s diagnosis.

As much as I want Owen’s Story to grow, grow, grow, to help spread awareness, I’m truly afraid that our tribe will dwindle down over time. This is a diagnosis where time is ticking and we truly don’t know if we have one year, 5 years left or 10+ years ahead. Regression in this disease treats each individual differently and all we know is that we have to take things as they come and hope that we can give Owen a great and happy life, allowing him to live as successfully as he can. With time, I also know, means dedication. Some may think in the months and years ahead that  it’s ‘not as important’ or they may just think ‘just another year.’ And honestly, for us, YES it is. ANOTHER YEAR. Another year that we are blessed to have our child on this earth.

So, here is what has been heavy on my heart at this time this year. I’m afraid that this is ‘a stage.’ A stage that will eventually be ‘swept under the rug’ as just another awareness day for the tribe and the supporters that are alongside us right now. I know that with dedication comes time and effort and I know that people and families get busy and may also just ‘forget.’ We have future plans for Owen and his awareness days and the thought of his people just slowly disappearing as he regresses makes me heart hurt so bad. We already noticed crickets coming from people and families we thought would be right by our side again this year. It just feels a little ‘off.’ And it feels scary.

I have nothing else to say really, other than just how important May 15th is to us, how important spreading awareness is for MPS and Sanfilippo Syndrome not only on that day but throughout the year, and how much we are always appreciative for your support. I worked and searched so hard within Owen’s younger childhood years to be here with this unfortunate diagnosis as our answer and I just wanted to share only one of the fears that I have as a mama in this journey. There are many that are not easy to talk about or allow my heart to know about for the future. Thank you for listening.

I pray that you will stick around, I pray that you will continue to pray and think about Owen and, if anything at all, share his story. I pray that you will ask questions when you have them and educate yourself with us and through us to understand our journey a little more. And I pray that you are able to show up in the smallest way when you are able.

Thank you for understanding where my heart is.

Thank you for helping me share Owen’s Story.

Thank you for everything.

xx