A Quick Update
I figured this was an appropriate time to come back and fill you in on what’s been going in our lives since May is Mental Health Awareness Month. The beginning of this semester was easy for me to push out a bunch of content but as the semester went on school required all my brain power. And taking care of Rowen’s needs. As a lot of you know by now, Rowen is with me 99% of the time. His dad is 100% involved, his job just has a difficult work schedule and he lives in Atlanta. But if it weren’t for his job, I wouldn’t be able to stay home to focus on school and Rowen. I try to juggle school, therapy, therapy for myself, doctors appointments and caring for him in general. He still needs a lot of my assistance when it comes to eating and getting places. This takes up a good chunk of my day sometimes when trying to do therapy for eating while also trying to get 4-5 hours of schoolwork done that day. Now that therapy is in person again, we also have someone coming to us weekly to work on things.
I found that I really enjoyed writing but once the notifications were going off nonstop I got flustered with answering everyone. Rowen and I are very alike where we get overstimulated from too much social interaction and shut down. Except he gets grumpy LOL. I am very grateful for all the kind words and love but I had to take some time to learn how to manage my time with the blog. I had to realize that even though I really wanted to answer everyone with heartfelt messages thanking them, I couldn’t. There was just not enough time in the day and the time needed to be focused on Rowen and school. So I took some time off to learn to balance. I feel like I’ve conquered that goal and now I have the summer to focus on writing.
A lot has happened in the last few months! We took a trip to Florida and Atlanta. Rowen started in person therapies again. He has lots of health updates. Which I’m happy to say are positive things. I graduate in two weeks with an Associates in Liberal Arts. My graduation is on the same day I turn 26, so that’s an emotional thing for me. I’ll touch more on that after the day has passed because I want the emotion to be raw and authentic. This is a big deal for me. I then start my senior year at Rowan University in the fall to complete my Bachelors in Psychology.
Over spring break we flew to Fort Myers to meet our friends Maddie and Myles! Maddie and I got connected on Instagram sometime last fall. Ever since we’ve developed a really awesome friendship I’m grateful for. She’s the one person I’ve felt I can relate too with all of this. We talk almost every day. We recently discovered sending voice messages back and forth because we are both so on the go!! She WAS a young single mom in college. Pleased to say she met a guy recently who has swept her off her feet. He was kind enough to be our DD and take us out the night I flew in. Most importantly, he’s great with Myles. I approve. I’m a bit older than her but our maturity levels are similar. I’m very proud of her for everything she’s been through and how she handles it. We went to stay with her family for our first World Down Syndrome Day. Maddie started a nonprofit in Myles honor called Myles Message. (@mylesmessagenonprofit on Instagram) They focus on helping local families in the Fort Myers area who have babies with Down Syndrome. They provide resources and support. I’m really glad we got to be apart of their first event. Being it was our first World Down Syndrome Day, it was emotional. I really think I’ve been living the last year in denial a bit. Not in a bad way. Just in survival mode trying to get everything done for him to make sure he’s getting the support he needs. I haven’t had time to process. I’m not sure that I ever will. Being surrounded with other families with kids like mine was a reality check that this IS my new reality. Seeing the older kids is hard. I can’t picture myself there yet. I have to remind myself everyone develops differently and that it’s ok to be scared of the unknown. That’s true in all humans. Not just people with Down Syndrome. One thing that fundraiser wasn’t lacking, was personality and smiles. I’m really glad we got to be apart of it. So. Much. Joy. I’ll be taking over Myles Message Instagram in June when we go to Children’s Hospital of Philadelphia for our follow up with the Trisomy 21 clinic. So stay tuned for that!
The second part of our trip, we spent 5 days in Atlanta with Rowen’s dad. His work schedule is all over the place and he never knows when he can come home. Sometimes he’s forced to go weeks without seeing Rowen and I know it takes a toll on him. So, we went to him! We had a really fun week. We went to the aquarium and the zoo. His dad got to spend some quality time with him that he hasn’t had in awhile. I’m really grateful to have such a good relationship with him. I realized not a lot of parents are able to coparent like we do. He’s my friend AND Rowens dad. Rowen has been so many cool places in his first year of life. I’m happy we’ll get to show him pictures when he’s a bit older and continue the adventures. He was on 4 planes in a week and he loved EVERY second of it. He’s the best travel companion. Totally intrigued with the airplane. Not to mention, this kid LOVES to socialize.
I have some really exciting updates on Rowen’s health. We’ve been dismissed from GI. This means Rowen’s stomach issues and reflux has improved enough that the doctor felt comfortable releasing him and taking him off the meds. He’s on par for his height/weight. He’s hitting milestones and has become such an inquisitive little stinker. He hates when people wear masks so he tries to rip them off their faces LOL. He’s now sitting up unassisted. We’re working on transitioning from sitting up to tummy and tummy to sitting up in therapy. We also had a hearing test in late April. He failed his left side at birth. We’ve been trying to diagnose his hearing issues with 5 hearing screenings since then. Happy to report his hearing is perfect for speech development. Kids with DS are more prone to middle ear infections and often have low set, small ear canals. This can inhibit the sound waves traveling to the brain to process speech and giving responses. A lot of people confuse their speech issues with the inadequacy to put sentences together or due to their “intellectual disability”. Unless they have a specified diagnosis, the speech difficultly often comes from the different anatomy of their ears not solely because they have Down Syndrome.
Rowen has been doing really great health wise and I’m over the moon grateful for that. A lot of families in our community have been losing children and it’s a gut wrenching reminder of how blessed we are and how much worse it could be. But it’s also a reality check that this could be Rowen some day. Losing a child is hard. But I imagine losing a child with special needs is excruciating. We wake up every day with our worlds revolving around our kids needs since their diagnosis, then one day your purpose for waking up is gone. We don’t become empty nesters when our kids turn 18. But part of me is happy about that. Being a special needs parent consumes your identity. As much as we wish it didn’t sometimes. That may not be true for everyone, but it is something I struggle with. But I wouldn’t have it any other way.
We’re currently on a trip with my family and grandparents in myrtle beach. Rowen’s dad flew down for 24 hours when we first got here too. He hasn’t seen him in a few weeks. We had a really good time! My grandparents have traveled to every state except Hawaii in a camper since I was little. They’re getting older and I’m not sure how much longer they’ll be doing that. But I’m glad I get to take Rowen on at least one traditional camping trip with them. Doing that was one of the highlights of my childhood. Once I get back from our trip, I’ll have lots of new updates and things to talk about. I’ve started planning Rowen’s first birthday and it’s so surreal he’s almost a year old!
As always, Thanks for following our journey and keeping up 💙💛