April has been busy as we expected. Addy had her MST/PFT test, Ethen had his signing day, Addyson has a bunch of appts next week, I have had pre-op Appts (for my surgery on 1 MAY) and then we had a camping trip planned. Plus work, school, softball and karate. Along with a few other things that popped up.
Busy months go quick, but just tend to breed the stress/anxiety, especially for someone who is anxious anyway. Addy is well aware that the appointments this month are big ones. She also has expressed that she is worried about my surgery. She feels bad when her anxiety shows, when others notice it. She told me this weekend that she tries so hard to hide/control her anxiety and she feels like she has failed if others note her anxiety. Randy and I are very aware that she still has separation anxiety issues. I think this is from all those hospital stays. I can’t leave her, so I always stay 24/7 and some of our stays have been long. By the time we get home, she is used to us being there with her all day/night, so it takes a minute to reset and reassure her that she’s okay even if we are not with her in the same space. Medical trauma is so real and affects us all so differently.
Addy expressed to us on Friday that she felt like she was stronger, healthier, less pain when she had her ostomy. She is at the age where she is realizing the pro/con to each medical choice that she makes. That some “fixes” aren’t really fixes and that sometimes what we think is the better option, isn’t always the better one. I truly thought if we reversed her ostomy, her pots would improve. That is 100% not true. POTS proved me wrong, it said “I’m here and not going away” 😦 In my head, since she didn’t have POTS till the ostomy….reverse the ostomy…..reverse the pots. That is not true. It did not work. We can all agree that it didn’t work, and her stomach pain is worse now that it was. However, the ostomy had its issues too, she dehydrated a lot more often. She would need hospitalization with every stomach bug, and some days that dang ostomy bag just wouldn’t stick, which was just awful 😦 It would totally crash our day. Everything has a pro and a con, and it’s just getting tough on deciding the best paths forward. Our team pretty much said for the POTS that we have tried all that we can, so IDK what more to do. I feel like we are at a standstill, with no way to move forward. It’s emotionally draining for her, for us, for our family, for our friends. We all just feel stuck.
However, I must say. Today my day was made. A friend of Addys, One she has known for 7 yrs now had to do a school assignment on her hero. She did it on Addyson. She said Addy is her hero because:
Addy encourages her
Addy is selfless
Addy helps her when she is scared, she helps her let go and get through it.
She said Addycheers everyone else on
She said Addyeven helps her out, even though Addy might be in the hospital.
Her final sentence was: In conclusion, I am so grateful for her and Addy is my favorite hero ever.
This made my heart smile. I shed a tear at work, but it made me feel like we are doing right with the kids. It’s tough, We know that sometimes Addy gets special experiences because of her disorders, however, we always hope that Addy takes what she learns from her journey and uses it to help others. We want her to use that determination, strength, spunk, etc to help other kids through their journey. We all have a journey and everyone’s looks different. Even though this friend might not be spending time in and out of the hospital, she might have a different path to navigate, and we are so proud that it sounds like Addy is being a great friend to her. That Addy’s learned to help others through their “Tough”, through their “journey”, be that inspiration for them when they feel out of hope, or like they don’t fit. We have always tried to show Addy that she can take this experience and crumble, or she can take it and keep pushing forward, smiling and showing everyone how great things can be, even when they look gloomy. She is doing that, she’s kicking butt with it and I’m so glad that at 10 and 11, these kids see it. They are great friends. Her parents are amazing too and we are so grateful to have multiple friends like this with great kids and great parents, helping us through this medical journey.
For the remainder of this week, we have my last pre-op appt, then Addy’s orthopedic check (to see if her brace can be removed), her first softball tournament of the season, and then dinner with her GW Team (on saturday) we are meeting two of the girls (that we have grown super close too), we are meeting their families. We are so excited. Their girls are just amazing and we want them to hear it from us! They need to know! These girls are swamped with work, college, softball, etc, but they make time for Addy. They make time to check in on our whole family. To send videos, cards, gifts – – to be a calm when we are in the hospital waiting for a plan. They are always there for her and us. I didn’t realize how much our whole family needed them, but we did, and they are family. We love them!!!
Beaming with hope 