Last night was maybe the hardest night altogether.

Yesterday evening when we gave her meds to her there were a lot of tears around that time. She started crying and asking me stuff like, “Why are you mad at me?” and “Why are you being so mean to me?” and a few other little questions like so. My heart fell apart.

She woke up every 3 hours for milk through the night, never finishing her bottle, but always crying for more. Then at 3AM this morning she guzzled down some milk and afterwards said, “MOMMMMIE!! That milk you makeddd me was really really really really really gooooood!!” She was so content and fell fast asleep. Thank you, Lord.

 I had a good cry last night. It was worth it. This is hard. It’s hard to be away from my Zoey, who I never have to be away from, it’s hard to be away from a lot of people, but it’s hard to watch and listen to my little one struggle through something, knowing I’m the reason she’s going through it. Don’t be fooled, I understand fully that this is for her benefit and that I truly believe this will be successful . . . but it’s just that I am the one that essentially put her in this place. I was the deciding factor. Her entire healthcare team was on board with this and it was the recommendation of the therapist that’s been working with her for 3 years now. I didn’t make this decision lightly. But knowing that I fought so hard to get us here . . . knowing that I have to say, “NO”, so many times a day to her when she’s begging for milk and food, it’s hurting my heart. Really. It’s breaking my heart. Because I know there are women all over the world who are doing this daily to their children because they just don’t have the means to give to their children. We’re telling our kids no for very different reasons, but the pain is there regardless. And it hurts. And my heart hurts for them, and it hurts for my daughter, and then I feel selfish for being so upset about it. And then I don’t even know how to feel. 

What I do know is this all sucks. And every day that I watch my daughter go into this room my thoughts attack me. Did you try hard enough? Did you ask enough questions? Did you look for all the answers? Did you search for the right kind of help all those years? Did it need to come to this? Did you do the right thing? Is she going to forgive you? Will she understand? Just wondering if I’d already let her down long ago. 

I’m completely exhausted fighting my emotions about this. It brings me back to when she was just little. We’d go over to my friend’s house, Coffee at Jenn’s, we called it. And I’d have at least a half a dozen sweet friends from church there. . . always with their listening ears, encouraging words, infectious laughter, and heartfelt prayers. Those are the moments worth remembering. Those are the moments that anchored me, that helped me to steady myself when I felt like I was being tossed about in a storm. Those are the same moments, same women, that helped propel me into better times. That’s something worth being thankful for. I can look back to that time and see that God surrounded me with exactly who I’d need to lift me up and encourage me and just be there. I know that there will be a day in our future I’ll look back at this time and what I’m going through and my hope is that I’m just going to remember those who’ve been here during this season, too, because it’s tearing me up and the only easy day was yesterday . . . and it was pretty hard. 

I’m in a lot of pain . . . this couch I’m sleeping on isn’t really helping. . . though it’s not terrible – it’s not really comfortable and I’m almost looking forward to when I get back home and have surgery. Almost. Oh, this morning Posie asked me if it was time to go home yet. I told her that it wasn’t. So then she asked, “When we go home can we get a donut?” (Am I being punked? That’s a for sure HECK YES!) I told her we could and I couldn’t help but smile, I was so glad we were going to be having a better day! Except, no. 7:15AM rolled around and I informed her that we were going to be wearing our glasses and that just shut her down. We had a nice little meltdown. We really haven’t been wearing them since Christmas break and it’s the perfect structured environment to get her back into them. A fountain of tears came, she was not looking at me after that, and her behavior has been disruptive, at best, today.

I do have such a praise for this morning in feeding therapy. She ate bites of pancakes with syrup, turkey sausage, bacon, and cheese quesadilla. She gave a thumbs down for the quesadilla, lol. What!?! But that’s great she’s trying stuff. It’s great that she’s doing so well this past week but she actually needs to have some negative behavior and resistance in therapy, as well, like she does at home where she flat refuses/gags/vomits so they can assess and address everything together here. Everything is under the watchful eye of neuropsychologists and psychologist (and a lot of other ppl). They’re going to decrease her meal time in the afternoon by 10 minutes and decrease the volume b/c she’s been puking consistently with that meal time and they’re going to meet and determine if they’re going to take away her afternoon bottle (the only one she gets all day). Please, don’t let them do that. I don’t think I can handle that.

We went outside and played some and she had fun. She worked hard in OT today both times, they discussed bringing back “brushing”, which we haven’t been doing in a while. If you’re unsure of what that means, it means using something called The Wilbarger Protocol.

She’s cracking me up with this urine toilet hat. She was so happy today. She got to the 10oz mark so it appeared to read around 200ml in the toilet and she said, “MOM! 200oz, I’ve been trying for days to get 200oz!” Bahahahaha! I love her so much!

So pray for us. Things are getting harder, as I mentioned, but today they’ve decided that they’re going to be taking away over night feedings. The 1st week it was unlimited overnight meals, she could have however many bottles she wanted between 6:30PM-6:30AM. Not anymore. She can now have 1 bottle at 6:30 PM (maybe one more at night if she falls asleep late) and 1 bottle at 6:30 AM. No more through the night. She’s going to be mad about that and that means less sleep for me.

Speaking of sleep. They’re going to talk to the dr about putting her back on Melatonin. It’s never really worked for us but they want to try to get her taking it b/c of the whole “lil’ miss doesn’t sleep” thing. We were told when she was 1 years old that they wouldn’t put her on clonidine till she was 5 or 6. So if a higher dose of Melatonin doesn’t help, then we’ll have to see about that when we go back to the dr back home I imagine.

We set the alarm off again. Hahahahaha! As soon as we were half way down the elevator we heard it and there were already people on the other side of the doors when it opened. Some staff member said, “It’s okay, it’s just the system thinks she’s walking through the back doors right there, pointing to the kitchen area. Too funny. I’m glad it works.

Earlier the speech pathologist said they’re going to discuss with the rest of the team maybe bringing me into the room with her a little earlier than usual for therapy. There are phases. 1st you watch/listen from outside of the room on the other side of the glass. Then eventually you move into the room and watch/listen. Then you “do” the therapy with her as they guide you. Then they switch places with you and they go on the other side of the glass while you do the session with her solo.

We got to FaceTime her daddy and sissy earlier and she was so stinking excited about that. She really wanted to talk to her sister and I know it sure made her happy to have some “sissy” time and she told her sister that she would bring her some ice home to our house from the hospital (she’s been enjoying the crushed ice at the hospital). Hilarious.

Tomorrow will be busy. New schedule. New feeding routine w/the bottles/milk. The drs may try to get her started on the melatonin and speak with OT about working with her on taking her meds. Last night and this morning were so hard, I’m just ready for a shower and bed time. We have one feeding therapy left and then we can hopefully settle in for the night. Please pray for Posie.