Leo, Our Little Lion Man

      Brad and I got away for two nights! We left on a Friday afternoon and came back that Sunday afternoon. We have left Leo before for just about 24 hours twice. But one of those was while he was in the hospital so it doesn't really feel like it counts. This was such a special little trip.     I have to brag on my husband a little bit. He picked our location, found our lodging, and planned what little of it we did plan. He was very intentional and attentive in communicating the value of the two of us having time together and getting away.      We are both so grateful for my mom and my sister, Phoebe. Mom watched Leo for the first 24 hours about and then Phoebe and her family took over. Leo spent Friday night at our house with Nana and D (the nurse) and then spent Saturday at my sister's house! It was so sweet to leave him in very capable hands. We wrote up about 3 pages of "instructions" and helpful things. Leo got meds and fed well and didn't p...

    Therapy is a beast. I know I've talked about this before, but this is honestly what is most pressing for me right now. Stepping back and looking at the big picture, though? Leo is killing it. He's rocking it! He's got 4-6 therapy sessions a week and he works really hard in each one. He greets the therapists with a smile 99% of the time. He loves having someone other than mom to play with--not that mom is bad, it's just so exciting when someone comes over . He's developing on his own beautiful curve (although I really don't know if it's that shape or not). Some skills come more slowly than others. Some skills are modified to Leo's body and sometimes we push him to do them in a way that is not  natural to his body. He's just very strong, mentally and physically, and he's got a good life.     But what's it like from my point of view?  It's so hard to not take on the pressure of desired outcomes for Leo when it comes to therapy. I think t...

      Boy, oh boy are we having fun these days. But first off. We have......wait for it.......a night nurse! I'll call her D. D was with us every other Sunday night and then our other nurse quit. D had some switches in her schedule and planned to work with us more full time for March and April. She was here more than she wasn't. Made a huge difference for me. For the month of April she is here Sunday thru Friday night! I got a call from the agency last week and they told me something like, "I'm sorry, but starting in May D won't be with you Sunday and Wednesday nights." Hesitant to believe the implications of this statement, I started laying everything out so that I could hear her say loud and clear that D was staying with us. And, yes! Starting in May it's a permanent placement Monday, Tuesday, Thursday, Friday!  We are overjoyed. We feel very comfortable with D. Leo likes her. She doesn't fluster easily. She can hold Leo. She has already seen his goo...

    So we're almost at the end of Leo's birthday month, but I still wanted to talk about his birthday. This one felt a lot different from last year's. Well, I'm not sure if it did for Leo, but it did for Brad and me.      His first birthday had a lot more grief and anticipation. I remember walking through the day in my head, "Ok, this is when we went into the hospital. This is when I started pushing." I was so aware of the timeline the whole day. It's a weird feeling to come closer to the single moment that changed your life so drastically. We invited our family over and celebrated and also had time for sharing about Leo's first year of life and the different experiences people had of the day Leo was born. There was a lot of grief.      This year, it was 10 days before his birthday and we hadn't planned anything. We weren't dreading it. We truly wanted to celebrate, and didn't feel the need to revisit all of the pain from the day he was bor...

    It communicates so much to us when you hold Leo. I think the basics of what it communicates is that I'm not alone--we're not alone--and you care for us even though there are different, weird, uncomfortable, scary things about Leo's special needs. But it communicates all of that and more on a deep level.     What goes on in my head when someone is holding Leo:      "Oh, he's unhappy. He's arching and pushing. Are they ok? Is he ok? Should I say something to help them help him stop arching? I don't know if what I say will even help. Will it come across as controlling, untrusting, too much? Are they frustrated? Do they want me to take him back? I want them to feel trusted by me with my kid. I don't want them to feel burdened by him. I want to help because he's not easy to hold. It takes time and experience to get used to. Ok, don't keep glancing over. But are they ok?"     My fears are to be a hovering and controlling mother and friend. My...

      We went to see the Bone Health Clinic. We were referred to them after Leo fractured a rib. It was a very encouraging appointment from my perspective.      The doctor ordered some blood work and a urine test for Leo so that he could look at Leo's growth hormones and how his body absorbs calcium and vitamin d. Nothing about Leo struck him as urgent and off. He gave various reasons for why we need to be aware of bone health in kids like Leo, what are the concerns, and future treatment. It's basically monitoring that is required. It very much seemed like this is part of the deal. Not that Leo is super fragile, but this is something that can happen. His movements and development are not natural so this means that growing can pose different problems.      I was kind of encouraged by something the doctor said about Leo's muscles. He felt how strong Leo is--if you have held him, you know what I'm talking about. And the doctor said that Leo's st...

      This one caught us off guard, and it’s been an interesting process.  Our nighttime nurse...left. Our last night with her was the 17th. There was miscommunication between me and the agency so I'm not exactly sure when she gave her notice, but we found on the morning of a Monday that she wasn't coming that night.  Honestly, though, it was God's timing because I opened the email right at the beginning of my virtual counseling session. It was incredibly healthy to talk through those feelings and our new situation with her. Brad and I are not angry with our nurse. It's just a little disappointing and sad. We know why she left. We understand. We are so grateful. She really did change our lives. She gave me my life back--8 months ago now. You may think that sounds like an exaggeration, but I am confident it is not. She worked with us through formula pukes, colds, an ER run, more colds, a move. She cared for him in a pack and play, bending down to him so that she ...