I would like to include you in this project. Would you reflect for a few minutes and then comment a memory you have of Aimee, a note about how she has impacted you, or even just a word that you would use to describe her? You are a part of her life even if you have never met her. Your prayers, your support, and your love for her are dear and should be represented in this compliation. Our email is EDR2005@gmail.com, if you would prefer to keep it private.
Aimee and I visited the neurology clinic this week. Since our last visit in October, I had seen new seizures develop that I was concerned about. The doctor wanted to avoid admitting Aimee for an extended EEG to determine the frequency of these new seizures. He has one other drug he wants to try with Aimee before putting her on the priority list for the ketogenic diet. Apparently this drug was not available to be used before because she was too young. It has less side effects and may control all the types of seizures that she has, including the clonic ones, which are the more difficult to control.
Before he could approve it for her though, we had to have an EKG done to check out her heart. She is always so patient with tests!
Even though I agreed with starting this new medication, I found myself grieving, almost nauseous on Friday night when I got the results and was preparing to give her first dose. Although she is already on a long list of medications, including two for seizures, this one really hit me. I hate giving her medications, especially new ones that have unknown results. If only I could just hold her, just hide her away from the doctors and protect her. Instead, I am the one to continually drug her, to torture her with treatments, to approve tests, to suction her although her throat already appears raw, to pull out a dozen eyelashes trying to keep her continually infected eyes clear, to continually tweak routines like she is a guinea pig, to interrupt her sleep during the night to adjust her leaking mask, to hold her down for a catheter or still for a blood draw.
Love doesn't always look like what I would like it to be.
I feel speechless. I re-read this post for the second time just now and have been sitting here for the last several minutes not knowing how to respond.
ReplyDeleteI know I want to thank you for taking me deeper into your heart. My heart breaks for yours. I know I want to apologize for any times I have offered ignorant advice or surface-y comfort. I truly have no idea. You have been gracious to include me instead of writing me off as I stumble around trying to understand a little bit of the life you live so well. You are one of my heroes. For real.
Aimee looks so grown up in the picture on top. I cannot believe she is almost 5 already. Time really does fly past.
I will work on my bit for her book--what is the deadline for it?
I love you my Precious Sister
Your words and questions and actions have been essential to get us this far. You are so bold to confront us and so gentle to cry with us. Thank you for giving us so much. And for your words here. I love you.
DeleteAimee's book... Well I am working on it and hoping to have it done by mid-February. 5 years is a lot to put into one book! What an amazing little girl she is!
Dear Sweet Aimee,
ReplyDeleteWe know your heart, we know your joys, your suffering, your pain, your hope, your faith. God amazes me, bringing us all together, people who have never physically met, yet we share so much. We pray for you, for your family daily. You are such a precious girl and we are so very thankful for you. Happy Birthday Sweet Girl!!!
Rosa, as I type I cannot hold back my tears....we also are at a very hard place right now, balancing seizure medicine, trying to help our sweet girl. We were so hopeful to get to the hospital, and we had to cancel our appointments due to the huge snow storm coming. This winter has brought us so much illness and questions, so many hard times and suffering. I wish I was better with words, that I could say wonderful and comforting things to you....but I've never been good with speaking what my heart is trying to say. I completely understand your feelings and your experiences with Aimee, and if that it helps I want you to know that you are not alone. I have really struggled lately with every choice I make, every therapy, every medication...." Am I doing what's right?"
We love you all and pray God will continue to guide you and comfort you.
Jennifer and Betty