I think we just had our best day all summer.
We've had such ups and downs with so many different things. As I mentioned before, my girl has had a rough one these last several months. We've had a lot of issues w/ what we call 'fussies'....varying degrees of irritability throughout days, then things get really tough in the evenings. I mentioned also that we've been working with a few Dr.s and most recently one of them said he's not sure the medicine she's taking is really doing much good. Things have been so inconsistent that they'll go well for awhile, then when she gets any kind of illness, things just fall apart, and it takes so long for her to bounce back, if she even does....and if not, try something else to help. It's been a cycle we've been in for a 3 years now. But what's been helpful is we started seeing a new Dr. since last August, a whole year now. He's now experienced an entire year of trying a variety of medications, some were total disasters, some seem to work for short periods...again, until she gets sick w/ anything that tends to last weeks and weeks. We've been working to get pulled into the children's hospital system, where we are already established with a rheumatologist, but now pediatrician, and hopefully a few other specialties so we can work as a coordinated team.
That's what's been so challenging thus far is that 1) the "specialists" around here are quite underwhelming and we live in a major city....it took us 4 Dr.'s to finally (by dumb luck) get referred to the one we have now. He's amazing. He's the one that paved the road to help us get in to see the children's hospital Dr. But, he's not in the children's hospital system himself (although he was in the past and that's why he's recommending we get 'under one roof'). 2) Our previous pediatrician has not been helpful AT ALL in helping us navigate any of this. If it's beyond a common cold or a well-visit, she would pull out her sheet of referrals and say, choose one. Never seemed to be interested in helping us dig deeper. I think the final straw was when she looked at me, crying in front of her over how hard things were and asking for additional support, and she said, 'I don't have time for this'. Never apologized to this day....so, my son is still at their office, but just sees a new Dr.. I'm not ready to change practices with my son yet because I need to make sure the new one for my girl works out well first. We've only been there once and I didn't love that Dr. either, so we are trying a new one in the same practice tied to the children's hospital for my girls' well visit coming soon. I hope she's more impressive. The first one said Oh yeah, I know the rheumatologist that referred you to our practice. She's good. Funny....the rheumatologist is a HE. 3) After 3 years we don't exactly have any definitive on what exactly the issue is. She doesn't neatly fit into any particular bucket and that's what has been so tricky....in addition, she doesn't react at all to medications in a typical way, which has made this road so challenging. 4) Child therapists here suck. They just do. We've been to 3 different ones--with one of the last ones saying 'look, I cost a lot of money. And, I can't help you', interviewed at least 2 more.....I refuse to believe my expectations are too high. If you can't connect with my child, then you aren't right for us at all. So many don't even call you back. Most, I'd say 90% of the "recommended" ones also don't accept insurance. It has made me feel like this profession is full of quacks, and I'm exhausted trying to find a good one. And noone wants to talk about if their child sees one because you can't get a friend 'referral' out of anyone. The school counselor suggestions landed us with hey, can't help you. Her current Dr. has recommendations but they are almost 45 minutes away if in person. It may be worth it at this point.
All of this to say, it has been a hard road. So back to the fact that the Dr. has suggested the medicine likely isn't helping, and in fact might be doing more harm than good. Things don't stay consistent and and on top of that, my girl has put on 18 lbs in one year. The typical norm is 5-7lbs. That in and of itself is causing a whole other set of issues w/ body image and self esteem. So, he said we need to just stop everything and get a baseline. We stopped one a few months ago and it seemed to be going ok. We tried to stop the current one in July and it was a sh&t show. Back to my comment about she doesn't have typical reactions to anything. So, with help from the Dr. we decided to try again and just tough it out. Stop it, and see how it goes....we did that one Wednesday this past week. It's not been easy. I will say this.....no parent wants their child to suffer. No parent wants to think they've done something to make things worse for their kid, when the only goal was to try and find something to help. I've had a hard time lately feeling bad and second guessing a lot of things. I think back over the past year and how when things started to escalate last year, I was a fish out of water. I had no idea what was happening, why it was happening, and what to do about it. I made a lot of mistakes. I recently talked to my girl about this and told her I was so so sorry for how I handled things in the past and could she forgive me. I was so proud of her, because she responded and said 'mom, you did the best you could. We all have feelings'. I hope she firmly believes that. Nothing could have prepared me for how hard things have been. All that to say, after having more time researching, reading as much as I can wherever I can, and dealing with our new 'normal', Ive been able to stay more calm, be more supportive, and let my girl see how no matter what, I've got her back. I'm there for here...I will support her....and I love her. I've learned how to praise her in tough times for the things she can do. I've recently thought more about how hard things must have been for her....and the one person she could rely on was struggling. That's created some guilt for me. But, it's just shifted my focus/heart about when things are currently happening, I can come at it from a place of empathy. What I think has been most healing is we can talk to each other and I've told her everything I'm putting out here.
So, all that back story to say that today was such a wonderful day I am filled with joy. My heart is warm.
It started with us just relaxing together, doing ipads and phone. Then I said hey, let's go get some healthy salads together. We went to our favorite place and the three of us sitting there, talking, no fussing, enjoying our meal--my son has always been into salads, but I finally got my girl to enjoy them too. We had agreed earlier we would do one errand for each kid. My son needed new athletic shorts and of course online was sold out, so I looked up where they were in a store in the area. We set out after lunch and just had so much fun talking in the 30 minute car ride, making jokes with each other...laughing. All of us laughing. We get to the store and no meltdowns from anyone--even my son who can't stand shopping...Found the shorts that are becoming a needle in haystack to find. We then drive home and while we were driving my girl asked to play music from songs I had on my phone. So we have our 'family' songs we all love, which we then all 3 start singing, laughing some more, and just enjoying the trip back to our close to home target--we needed to get school snack items, some basics, and my girl wanted to spend some of her birthday money on a poke mon item. The store was a zoo, but after that we came home and we again relaxed with our ipads/phone. Then, I made the most healthy dinner with simple stuff....eggs (scrambled for my son, boiled for my girl), avocado, strawberries. At 6:30 pm we turn off all electronics and do family time. We started to play yatzee, but neither was too interested so decided while my son was in the bath, my girl and I would check off her school supply list and she'd pack up her bags ready for tomorrow. Then my girl took her bath while my son organized his poke mon cards. We came back together, had some snacks and watched the cartoon Big city green. If you haven't seen it, you should. I literally laugh outloud almost every show....and it takes a lot for me to do that. We made a deal ahead of time because my girl asked to watch both shows of the episode and I said okay, BUT, they need to agree to having a calm bedtime. They went, brushed teeth, a few shenanigans.....but then after kisses they both took themselves into their rooms, turned lights off when I asked at 9:15pm. Then peacefully went to sleep at 9:30pm. (an hour after normal bedtime but hey, this day was so good).
It felt like magic. We went from having a serious meltdown yesterday unlike one we haven't seen in almost a year (which I'm still mad at the neighbor boy for being such a jerk to my girl)......to having the best day as a family we've had in so long. Big sigh of relief. And happiness.
School starts in a few days and we are all getting excited....we find out teacher assignments tomorrow morning, meet the teacher tomorrow evening, and first day of school is Wednesday. I have a 2nd and 5th grader. Wow. Here's to hoping my girl's last year of elementary is a great one, and here's to my son actually liking school enough to not throw his backpack everyday after school when he gets home. It's the little wins.
Still working on childcare...but one thing at a time, right?
