The morning started fine... Jilli's heart rate was a little high overnight so I was a little nervous because she crashed this week last year and had issues this week when she was a baby too so it can be a week that swings either way for us, but she woke up in a really good mood and we cuddled to watch a show together. Lydia woke up in a mood... she had a full melt down before I even got her out of bed... then Jilli was sad that mommy time was over so she was crying but I got everyone calm and Jilli helped me pick up the entry way and get things ready for oxygen delivery. She then asked to read some of a book together so we did that and then we did a 100 piece puzzle together that she got in the princes basket from Kade's Klassic. Oxygen was delivered... I always feel bad for our oxygen delivery people because we have a split level house it is a flight of stairs outside to get up to our front door... that is heavy when carrying oxygen tanks.
I watched a Disney youtuber while I ate lunch and then the kids and I headed to Walmart to pick up a few things. I don't normally shop at Walmart because we live in a tourist town our walmart can cost more then Target. But Jilli needed some new hair ties and they don't have them at Target and I needed to pick some things up for serving dinner at RMH on Sunday and Walmart has a better selection. It has been a long time since we have gotten so many yucky looks while out in public. My children were super well behaved and barely even talked most of the time we went down the isles... but for some reason today we needed lots of staring... staring is one thing but when it is accompanied with mean looks it makes me want to run out of the place... but loading the kids up to get them places is work so we just tried our best to not make eye contact with people and got our shopping done... but by the end of the shopping trip I was feeling the weight of the looks. We went to a check out lane that looked like we should move through quickly however the person in front had to have management called over multiple times at which point Lydia started to be less helpful in the shopping experience. We left the store and it was raining some but by the time we got to the car it was downpooring. Jillian's door decided today that it doesn't want to close which was fun in the rain and by the time I got in the car I was dripping wet. I sat in the drivers seat and looked over only to see a tick crawling across the arm rest. I hate ticks and this is the 4th one we have found in the last month. So took care of the tick and decided that I had recently gotten a gift card to Starbucks and there is a Starbucks in the Walmart packing lot that I was going to get a drink on the way home... I am not sure what happened but the drink didn't taste right. I was getting really frustrated at this point but put on a podcast and worked on changing my attitude about the situations because that I could control... were all of those things annoying.. sure... were any of them life changing... only if I allowed them to be. By the time I got home I was in a better mood. I got the kids in the house and put the groceries away and sat down to watch a Disney vlogger with Jilli. We had just started an episode and my phone rang showing the hospital.
I answered and talked with the nurse who let me know another situation is working on being taken care of (long story short on that... we were told we needed to see a new department, made the appointment back in April and first available was last week, the day before the appointment I get a voicemail that the person can no take on our case but they were trying to figure out someone who could... still don't have someone who is taking on our case for that new department...) and said that their main reason for calling was because they needed to set up an appointment with our head doctor and just Brent and I... that they did not want the girls there. Finding childcare for our girls is not easy especially since they can not go to sib care at the hospital. The nurse said they wanted to talk to us about some things without the kids in the room. She gave me the date and time they had set up the meeting for so I was busy trying to figure out if I could make that time work. This date is in just over 2 weeks. The call ended and my head started to swirl. While one the phone I was preoccupied with figuring out how I could make the logistics of this meeting work on a day I know Brent has stuff going on at his new job and figure out the girls... but once off the phone my head was swirling with trying to figure out what this meeting could be about.
We just saw this doctor for a very long appointment last month. We normally only see them every 6 months. This doctor has also called me on more then one occasion and we have had long phone conversations before. This is different. This has never happened before.
Now yes, we did talk to our team after Jilli's last hospital stay about how she is getting older and while we do not hide things from her medically we also need to have wisdom about how things are said... this request stems out of a really unfortunate situation that happened where how something was presented to us was not done in the best way when she was in the hospital and it was not ok that it was present that way to me, but it really was not ok that it was said the way that it was infront of her. But this still feels like more then just following that request for our team to remember her age and cognitive level.
This is where the honesty of the baggage I hold at this point comes in... I know I have trust issues with doctors and frankly I feel like a bunch on that is earned right now between a few different situations we have had in the past year. I am scarred after how a few situations have been handled.
One of the first things I was really mad about after the call was that I finally in the last 3 weeks have for the first time all year felt like I was in an ok place. I felt like the fog had lifted and every motion was not as heavy. It felt like spring had finally come after a really harsh winter and I felt like with that call that it meant that the heavy was all coming back and I felt like the break from the heavy wasn't long enough. I felt like I was morning the peace that I had for those few weeks. God grants me peace in the midst of every situation but this rest was a gift I was treasuring and felt like was being snatched from me.
With the stress of the last few months when something hits it feels a lot stronger then it had for a while. When Jilli was a baby everything felt so intense but as the years went on we developed cooping and when things hit they didn't feel like huge blows except when they were huge blows... but right now things can feel more intense. My GI system felt like it was on the worlds more intense roller coaster... my GI system has stuff on a good day and stress strikes there first. My EDS has been rough for a few days... I dislocated my ankle yesterday by sitting down on the couch. I became very cold and was shivering. My whole body was feeling the stress.
This is what reality is some days... these are the things I try not to talk about too much. I try to talk about all of the joy and great things in our lives because there really are so many... and I feel like the last few months I have posted a lot more negative then I want to. I was talking to someone the other day and I said that I feel bad that when we talk about NIH it is all the bad stuff because there were good moments in there too like meeting the people who work with the chimps in space and the chaplain.
But what I am really thankful for is the people who stopped and prayed when I made a facebook post about crying in bed. I was nervous making that post because I didn't want to seem whiny but man could I feel those prayers and I am SO thankful for them!
While at Walmart I had bought fresh veggies to make home made pizza for dinner but when Brent called to tell me he was leaving work I told him I didn't think I could eat dinner so I didn't start making it but around 6:30pm I decided I needed to eat... and everything in me just wanted to eat junk food, but I knew my body was in stress and I needed to support it in a loving way so I walked in the kitchen and started to cut up the vegetables. I made veggie pizza for dinner and it was so yummy and kind to my body.
A few people asked on that facebook post if I was going to call the nurse back and ask about what this appointment is about... and I might... here is some reality here... I really struggle with feeling like I am "too much"... too bossy to direct to demanding that I often shy away from those things when they are directly related to me. I always worry about seeming pushy. I also try hard to respect that if they call with a brief phone call like that it is because they do not want to talk about it over the phone and I try to respect that because I know on a professional level what that can be like. I try really hard to keep positive relationships with our team because I feel like my kids get the best care then. We are all human in this equation and if our team doesn't want to talk to me that is going to make it hard for us to work together as a team... now I hope we have a professional enough team that it wouldn't be an issue, but once again, we are all human and bring baggage with us to every conversation. People say to not worry about what others think of you... but honestly in relationships it matters.
My head has come up with tons of possibilities about what this meeting might be about but I am trying not to live in the what if land because that just digs a bigger hole. And we still have many other things we need to do before this meeting... we are making dinner at RMH on Sunday, then in the next two weeks we have echos, cardiology, tube changes in IR, and our yearly genetics appointment. We have a lot to walk through in the next few weeks... one step at a time.
 |
| Lydia doctor |
