A couple people have said to me in the last few days that I haven’t updated the blog in a while. Looking back I realized how long its really been. The days have been long, the months have been so short (I have no idea where May or June went).
We are trucking along with therapies: Speech & Language through Birth-3 bi-weekly, OT through Birth-3 bi-weekly, 21 hours of in home ABA therapy. I will do anything to help Noley be all he can be, but I am starting to feel trapped. It has been causing me a lot of anxiety and a lot of those new stay at home mom feelings are emerging again. The golden rule of stay at home momming: find mom groups and get out of the house. Therapy has made this difficult. I know they can venture out with us, but it is tricky to do it on the schedule of their rotations, to notify everyone before you go with addresses and times, to have to stick to those times, plus many of his goals are home oriented right now and though going out is a great social skill (we do with him often) it is not the work hard to drive home goals we are currently trying to master. It is like having another child/schedule to work around and it is tough. I feel trapped some days. I feel alone again. I feel like I want to go to work (haha not often but some days!) so I can have adult interaction. I want to stop talking our poor therapists ears off because they are the only adult I have seen in days besides Alex.
Sleep. Boy how I miss sleep. How I miss it being consistent, long stretches, and in my control. Meds are helping and I do believe we have our good weeks, but it is so hard when you know he will do better with more sleep but you cannot make his little body sleep.
The finances are a big deal. We were denied Katie Beckett (medicare based for people with disabilities) on the ground that Nolan “was not disabled enough.” This means we pay 20% of Nolan’s therapy bills after insurance and all of the supports needed (weighted blankets, weighted vests, meds, etc) fall on us. In June I recently went to my Usborne Books & More National Convention. I had a blast and learned a ton of ideas how to help my business work as well as make more money to help pay for all of Nolan’s therapy. I have so many business ideas and a ton of ambition to make this business work for our family. Then I came home and I am trying but where the heck do I find the time. Nolan doesnt nap so I have no “child free time” during the day. I am able to do my parties at night, but I want to do more wit this! I want to book fairs and booths, I want to find more people to have more parties (I literally cannot run this business without parties). Where do If ind the time to arrange more work time?
I am so overwhelmed with wanting to do it myself, keep therapy coming and helping, the finances of it all. I can do A LOT of what his therapists are doing. I have the background and training and I have been as observant as possible while he is in therapy. That being said, that would help financially, but it would not help with time to work, time with Stella, time to take care of the house, or even myself. Very “rock and a hard place” right now.
There isn’t a mom out there that doesn’t feel mom guilt. But when trying to give both your children all the love they need when one child needs a significant amount of extra attention, it is rough. Poor Stella hasn’t had a blog update in 3 months….and she had a first birthday in there! Torn between one on one with the kids and the house. Torn between cooking a meal (or even eating something I didn’t even cook) when Nolan needs 1:1 attention in order to play with toys. Nolan does not play with toys. If we are not there pretty much holding him to a toy, he is bouncing from one furniture object to another. How do I decide which to take care of: my home, which of my children, my job, or myself. I just feel like I am doing a little bit of everything ok rather than anything well.To top it all off we still have to navigate the new way we have to do things.
New isn’t always bad, but it is hard. We recently discovered that we can watch Fireworks if Nolan has an iPad/phone with his letter game and a blanket to pull over his head. We can go swimming if we start close to the pool, slowly getting closer, then kicking the water, and then finally bringing him in whining. Then we have to do something silly until he laughs and then we can keep him in the water. These are just the two most recent endeavors, but let me tell you getting these two figured out took frustration, tears (from everyone), and exasperation to figure out. It is exhausting knowing that a lot of our life is going to be this uphill battle. I know it will be totally worth it, but boy are we going to be tired.