I can hardly believe that today is the 1 month mark for Lilly! Some days it feels like its been 1 year!
I have to say, its been way harder than I was ready for!
I wish that I could spend my time with all of you expressing how great and easily we have adjusted and that it was no big deal, reality is, its been extremely difficult and it was only until today that I could even sit down and write about it. Sorry if my thoughts are all over the place but you'll get the picture!
The surgery itself went just fine. Medically she did great and we came home ready to conquer the world.
Unfortunately, things did not go quite like that.
Once all of the medication wore off and she became more clearly aware of what she had been through, she fell apart.
Although we had spent a lot of time trying to prepare Lilly for what she would be facing after surgery, she didn't realize that she was not going to just wake up in the hospital with new legs. She had no idea that this was a longer process than just the hospital stay.
I too was struggling with my own feelings of guilt for not making this situation more clear for her, but the truth is, I really didn't realize that this journey had so many more levels that just the obvious physical ones. Emotionally it has taken a greater toll on both of us than I was prepared for and spiritually I was not ready to question my choices.
Very soon she become mad, not kind of, but really mad! Lilly spent most of the first 2 weeks crying. She cried because of the pain that she thought she was going to feel but was being masked by fear and the occasional oxycodone, she cried because she was scared of what was there, and what was not there, she cried because she was mentally missing the legs that were gone. Many times she told me that she worried about the "little legs that didn't listen to her". She cried because she could feel something poking her toes that were no longer there. And when she wasn't crying, I was!
Lesson #1 - I have learned during this process that there are some things you just cant completely prepare yourself or your child for, this is one of those times! Do the very best you can and stay calm. Breathe in - breathe out, breathe in- breathe out.
And while all this was going on - at 8am Monday thru Friday the Homeschool teacher was at my doorstep ready to spend 1 hour with Lilly going over lessons and doing homework.
The beginning of week 3 ~ Lilly is going back to school and I had to return to work. Thank God for Lilly's teacher who not only prepared the kids for Lilly's return but even decorated the class for her return! Mrs. Finley has done everything humanly possible for Lillys transition back to school to be smooth and welcoming. She even set up a resting area for Lilly if she gets tired with a sleeping bag and yoga mat!
The distraction of her classmates and school was very helpful, and everyone has been so supportive and kind!
We returned to Shriners on March 3rd to have the stitches removed. It was planned to happen in their outpatient clinic and should not have taken more than 20 or so minutes. Didn't happen!
We had to return 10 days later when they could sedate her. She was hysterical about anyone touching or looking at her legs and the doctors felt that traumatizing her again was not necessary. A little "happy juice" however, and she was OK, stitches out!
In the meanwhile, all around us, friends and family were coming by, delivering dinners, bringing Lilly gifts and cards, stopping to visit with us and trying to hold us up! Thank God for all of you. I truly know how hard it is to stop in your busy lives and give again, but you all did, and we are eternally grateful!
By week 3 I started to see the true Lilly returning! However, talking about her legs or even thinking about them made her cry again. She thought that they were scary, which broke my heart but all along we tried to talk about them anyway. It was my hope that by talking, it would desensitize the trauma that she was experiencing and we could eventually move onto the next step in the journey. Well, it has worked S L O W L Y, very very S L O W L Y. Time is a funny thing, when you want it to go fast it is ridiculously slow and when you want it all to slow down, it races by.
Lesson #2 - Be patient, things will happen in their own time. You are not the boss!
Today Lilly is just beginning to try her new legs out. She will stand on them but for only a moment. Her new fun trick is "planking", for those of you who don't know what that is, here is a picture of Lilly planking, in my book planking is totally physically impossible but Lilly thinks they are great fun!
Next week she begins wearing compression socks that will help with circulation. We have been told that they will also make Lilly feel more secure and held together.
Each day, Lilly is doing better, but I must admit, it has been agonizingly slow.
She is truly amazing and I am so proud of her. Its been a rough road but we are headed for awesome times! She asked me today if we could start swim lessons soon. YES! YES! YES! You can start swim lessons, gymnastics, dance, whatever you want to try! Her future is limitless and I will encourage her to try whatever she thinks is possible today and always! (But first I want a full nights sleep!)
April 11th she will have her first experience with prosthetics!
No comments:
Post a Comment