We have been home for a little over a month. We have been busy. Overall, Harlie is doing well. I think we are past the point of possible infection with her chest incision. Honestly, we were probably there a while ago, but based on past experiences, it took longer for me to relax about it.
Less than a week after getting home, we had the hearing for her guardianship. This is something I've been working on for a while. A Guardian Ad Litem (GAL) was appointed and she came to our house a couple of days after we got home to interview Harlie and me. The attorney recommended that we make Murphy a back up Guardian, just in case something tragic happens to us. Ugh. So, me, Tom and Murphy met the attorney and GAL at the courthouse for the hearing.
We were the first called so we all went up and the attorney and GAL spoke to the judge. They explained in simplest terms why she needs a guardian. Hearing them say (in front of people) that she has a very loving family who takes great care of her just got to me. I guess it is feeling that we are seen and that all our efforts are recognized - it just made me cry. Which is the worst! This is not an appropriate place to cry! Plus, Murphy was there, and I didn't want him to see me cry about it. I got a hold of myself and luckily the whole event was over pretty quickly. The judge signed off on it with no issues. I could tell it got to Murphy, too, and I felt terrible about that. We talked later and I told him he will likely not have that responsibility and I think he knows that. It still just doesn't feel good. Anyway, we are now her Legal Guardians, which will make things a bit easier for me with all her stuff.
When she was in the hospital for her pacemaker, she developed a growth (possible granulation tissue) near her trach. This has happened before, but it usually goes away on its own within a couple of weeks. This time it really wants to stay. So, there have been so many messages, sent photos, prescriptions and treatment that I have to stay on top of.
The skin around her g-tube (feeding tube) has been irritated for years. So, I am constantly treating it. We see a nurse practitioner fairly often for this issue. Ultimately, it is thought that over the years her stoma has gotten too big, so it constantly leaks, which definitely hurts her skin. She's already got the largest size she can have, so upsizing is not an option. So, we need to try to shrink the stoma. But that requires more intense treatment than I can handle right now. So, we are treating the skin now, and in a few weeks, I will work on downsizing.
We had her follow up appointment for her pacemaker a couple of weeks ago. We had to go to Fredericksburg for that. But, we got to see Dr. Sherwin, so it was worth it. We love her. Since she got the new pacemaker we haven't gotten a reading (like battery life). There is a device in Harlie's room that sends a transmission to her docs. We had to get it to connect to her new device. I had Tom handle that. So, we got that working, which made me feel better. Then we went to her appt. The nurse did her stuff and said, "Okay, all looks good, she has five years estimated battery life left." I was like WHAT?! ONLY five years, it is brand new!??? So, Dr. Sherwin made some adjustments and got it up to seven years. Geez. I think the typical pacemaker battery is good for 10 years. But I guess the way Harlie's heart functions, it just requires more effort from the device, which wears out the battery faster.
Honestly, I've been feeling overwhelmed with her care right now. Her needs have been pretty intense since early May. We are nearing September as I write this. With school starting next week and her already scheduled appointments, the fall doesn't look like it will be much better.
We are at a point in our life/ages that we should be able to be backing off caring for our children. Murphy is 22, and on his own. Harlie will be 20 in September, and Cooper will be 18 in September.
Harlie should have graduated from high school by now. Yet, she is returning for her 5th year. Cooper will graduate this year and leave her behind. It absolutely breaks my heart. This is not the way it should be. Already he has participated in senior traditions at the school that Harlie will never participate in. She just doesn't have the friend group to create that scenario. No matter how much time goes by, that will never be okay with me. I love her the way she is, no doubt. But, my heart will always break for what she has to go through and knowing what she is missing in life.
While I am grateful for so much, there is no canceling out the grief associated with living an entirely different life than most. And there is no hiding from it. We watch other families and their children achieve milestones that will never come for her. One might think that we are used to it. But, it never stops hurting.
Add in that her care has escalated, that I'm older and in perimenopause, that I have full blown anxiety and horrendous fears - trust me - I'm struggling. There are days that giving her a bath feels like climbing a mountain. Every time I get an appointment reminder (which feels like every single fucking day), my eye twitches. The other day I had to spend 64 minutes on the phone with one of her pharmacies (we have to use three different ones) regarding two of her medications. It was torture.
On a good note, Cooper got home from summer camp. This was his 10th year at Winona Camps for Boys and it was his first year as a counselor and he loved it. He was gone for 56 days! We missed him so much! We picked him up from the airport on August 12th.
I started writing this last week, but could not finish. So, school started on Tuesday. Cooper made "senior jeans" with his friends. These are his last first day of school pics.
I was feeling much more frazzled before school started. But, today is Friday and just a few days with the new schedule and Harlie being at school has made me feel a little bit better. It occurred to me when she went to school on the first day that would be the longest we have been apart since early May! So, I do think her being at school all day will be good for the both of us. Also, she is pretty excited because she gets to take two science classes this year - Astronomy and Anatomy.
Okay, I'm going to wrap this up for now. Tom and I are doing something pretty special (from our perspective) for our 24th Anniversary coming up on the 31st. So, I'll post about that after.
Thank for caring about our girl and our family.
Much Love,
Christy xo
