Happy 2024!
Some goings-on in the Wilcox family :D
Leo got a haircut.
We shaved the little lion's mane. But it'll grow back. I promise! We just think he's the cutest. So, when he gets a straight buzz, I've been doing it. I feel very accomplished that I can buzz his head and get us both cleaned up afterwards. However, when he gets more of a haircut it's either my sister or my cousin doing it while I hold him. I'm a big fan of the buzz, though.
We had a family filled Christmas.
Blessed. To be a blessing. Holidays were sweet times.
A little story from them: We did a Friendsgiving one night and met some friends of friends. One guy asked to hold Leo and then offered to keep him while Brad and I got food and ate. It was a beautifully weird feeling to plate my food with Brad and sit down and eat while hearing Leo's happy noises from the couch. Leo was chatting away and the guy was so great with him. It was so wonderful to practice setting aside the voices of, "Is he frustrated at Leo's movement? Should I help him? Does Leo need me? What if Leo pukes on him?" and instead replace them with, "He's enjoying Leo. Leo's enjoying new people. Someone new is learning about Leo's movement. Leo's ok if he's uncomfortable some. Leo can learn through that." I never know if I'm explaining this sort of thing well. But it's sweet when people step in to Leo's life so enthusiastically. And it's sweet to see that we are not the only ones who can care for Leo. I'm not saying that just because this guy held him that he can now do everything that Leo needs. But it communicates a lot in regards to Leo's care.
We were a little sick.
Who hasn't been these days, right? Leo had a couple of rough nights over New Year's. It was a sickness, though, that welcomed thoughts like, "He's sick, but it's a normal kind of sick. He's getting stronger. I don't have to make him better. God sustains more than sleep does." However, in the midst of it there were also a lot of tears and anger and such. I don't mean to paint us as enjoying sickness, just trying to share some honest thoughts through it. It was also very rough. We didn't go to the ER. There was one day where we were considering it because of his cough. It wasn't constant, but maybe wheezy. He wasn't sleeping well. He was really uncomfortable which means a lot of arching, twisting his body into very unnatural positions, and so much teeth grinding. I am not exaggerating when I say that teeth grinding in particular can drive me to new levels of mental, emotional, and physical exhaustion. Holding him when he is uncomfortable takes a different kind of toll on us.
But still, in the midst of all of this there's the one encouraging thought that, "This is a normal thing. Not the way he's moving. But having a cold, being sick, etc."
We were incredibly thankful for family--particularly my mom--at coming over when they could to let either of us get a bit more sleep and to get a break from holding him. He needed to be held more because he was snotty and that means more pukes so he wasn't getting all of his feeds but he was hooked up to the feeding pump more because we were running the food slower... I hope that made sense.
Honestly, I don't mean to be dramatic. Just voice that we get mad and angry and tired and so incredibly frustrated and irritable. But ya get through it.
I got overwhelmed.
We had our first appointment with a new PCP. I forget if I mentioned that here. I think I did. I was not prepared for how overwhelming it would be for me to talk through Leo's eating, puking, weight, and all that with someone who hadn't walked it with me. I was very overwhelmed. She had read all the notes and was very educated on him, but I wanted to explain a lot. I left the appointment feeling very heard and liking the next steps we talked about. But it was quite the process for me to get there :)
I am also realizing that we have a lot of voices--imagine that with all of the therapists and doctors. And while I'm so grateful for Leo's team and every single voice on it, I'm finding my own voice, too. I'd like to note that I am not finding my voice because I'm being bullied and having to stand up for myself. It's a big deal to me to say that the medical team Leo has makes me feel heard, seen, respected, and cared for. It's not a perfect scenario every time but all-in-all, we communicate well. But I'm finding my voice simply because I'm growing and Leo's growing. A part of this appointment that I realized after was that we want our nutritionist to handle Leo's feeds, and I did not communicate that to our PCP because I couldn't verbalize it in that moment.
So I'm learning a lot about communicating and myself. Please pray as we get to know our doctor better. She's the first big transition like this and it can feel overwhelming when she hasn't been there for x, y, or z.
We got a new toy.
OH MY GOSH THIS IS THE COOLEST THING I'M SO HAPPY
We were gifted a wonderfold for Christmas and WOW. It's basically like a small pack-and-play on wheels. Leo and I have walked to the coffee shop and we also went grocery shopping (that one was with Daddy). I also took it on a run with me (with the lion man in it). It is another indescribable feeling to be
We are transitioning, hehe.
We will be transitioning out of Early Intervention in March and into the IU. That means that Leo will be 3 in March...crazy. Anyways, the transition is going well so far. We have met with IU and are in the process of getting Leo's evaluations for the different areas they will be working in with him. I'm learning a lot of new lingo. I didn't realize it, but IU can do in-home services so it looks like we'll keep doing that. That means that our weekly schedule will look different, but we'll probably continue to do therapy at home while doing a couple of extra therapies at Schreiber. Prayers appreciated as this transition progresses. We will have a couple of meetings and phone calls before Leo's third birthday.
A couple of things that are priorities to me as we approach this transition:
1) taking a couple of weeks without therapy (without jeopardizing qualifying for the service or taking a place in the therapists schedules)
As much as I can, I am going to schedule the IU therapies to start mid March, giving Leo and I some time with no therapies during the week. Life is more than therapy. I think that time away from therapy helps me with remembering that therapy isn't to fix Leo but to help him. And I don't want to communicate to him that therapy is his life. There's a lot more important things. It's just a good reset.
2) I need to be able to take a step back from therapy.
I want therapy to not be dependent on me being there. I am fairly confident in saying that I will be a very engaged parent even if I'm not fully present at therapy. Brad and I know what Leo's working on and ways to work on it at home. For me, particularly, it's good to take a step back. I want Leo to be able to work with more people. And I struggle with carrying pressure from therapies. Leo working on his therapy "homework" is kind of up to me. That's about 6 sessions a week that I have the opportunity to carry mentally and tell myself that we need to do it all. It's just healthy for me to realize that other can help him and I don't have to carry that load.
Early Intervention follows the coaching model of therapy which has been very, very helpful. But I can see the necessity for me stepping back. I'm not sure if I'm explaining this fully, but we're still sorting it out ourselves.
Thanks for being with us! I hope God gives you more of himself as we dive in to 2024!
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