The initial quarantine really put us into a funk as far as having a story to tell. Now, it has been months since my last post, and every time I sat down to try and blog, I could only come up with the same few sentences.
I am happy to have more time with my children.
I am mad to have more time with my children.
I am mad that my son’s services have been delayed.
I am worried I am not doing enough for his development. (That one was a common theme.)
Yesterday, while on a car trip with my husband, he asked me why I stopped blogging.
I responded: “I don’t know. I feel like I don’t have much to say. How much more can I say about Down Syndrome? I forget that he has it most of the time.”
Then, as he does, he immediately listed a long long list of things that have happened to us surrounding my son’s diagnosis to show me how wrong I was. I feel like our situation has officially become my new normal, so I missed a lot of opportunities to share since frankly, I couldn’t see them. This is our life now. I don’t notice the things that wouldn’t be in our life if he did not have Down Syndrome, because I am so used to it.
I needed that conversation to bring me back to Earth when it comes to writing these posts. It isn’t only for sorting out my own feelings like it was when I began Limitless Nicholas. It is now to connect with parents that are going on the same journey. It is to give back into the universe what I had received when reading similar blogs while going through those rough months in the beginning. Big shout out to my husband for the pep talk. There is so much to share.
Since I last posted the teletherapy post, it seems like my son has gone from being a baby to being a kid. Marley has grown like a weed as well, and since she started walking they are now a perfect match for each other when it comes to playing, fighting, or snack-stealing.
Just two days ago, there was a small film crew here that did a story on our family. They were a great group, and Nicholas’s episode is going to air on PBS! They found us because of Nicholas’ ambassadorship with NothingDown.org, which has been extended to April 2021!
I am always scared that I am not representing this community in the way they want to be represented, so hopefully, we did a good job. The guys who were here filming were so great with the kids, and later asked for some Limitless t-shirts so that they could support Nicholas as well! So cool!
There was one question asked during the interview that has really has been on my mind ever since.
“You said that having a child with Down Syndrome is not much different than having a child without it. What did you mean by that?”
This was a question that I did not even know the truth about until my daughter Marley was born. Of course, the reasons that make it different are the big things. Making sure he is signed up for services such as Speech, OT, and PT so that we can level the academic playing field as much as we can. Advocating for him whenever I can is also a big responsibility that I do not have yet for Marley, but I am sure she will need me to at some point in her life.
But, for the reasons that count, there really is not much of a difference from where I am standing. I love them both so much I can barely stand it. I am so proud when they accomplish new things, that the “when” of their accomplishments means very little. I discipline them exactly the same, as you would imagine a teacher raising her children would be like.
Marley has her own sets of needs, and she reminds us of that every day! When the film crew was here, I think she wanted some attention from them and got into the pool with her clothes on! That was her way of telling them that she was a cool kid too, not just her brother! Who, by the way, stole Dad’s sunglasses and strutted around for a while right before that.
Once you have come to terms with what Down Syndrome is actually is, and that you do not need to turn your life upside down to raise your child, it all falls into place.
Of course, this answer would not have sat well with me in the beginning. As I have said before, and have revisited since working on my book, one of the most annoying things so hear upon receiving a new diagnosis is “don’t worry, it’s a blessing”. Easy for you to say, stranger. You aren’t in this situation.
My hope that is I do not have to say that line to people ever. They will never have to take my word for it, because they can go online and just see it for themselves. They can see on our social media that our life brings new blessings every single day! Whenever there is a hardship, it only tightens the bond of our family. So, that is what brings me back to the blog that has connected me to families all over the world.
My husband was right, I still have a lot to share with other families. We just had is very first IEP meeting and received the draft of it today. PreK is around the corner. Nicholas had to be evaluated for his initial IEP using telehealth! There are countless things we need to talk about here!
Thank you to everyone who has been reaching out to ask me where all the blog posts went for giving me the push I needed!
See you all VERY soon!