Backstory first:I'm not sure that I've even written about the frustrating experiences we had discussing the placement of Tessa's CI magnet with her doctor. We learned very quickly that the placement of the magnet under the skin, where the external hardware will attach to Tessa's head, is even more significant when you are dealing with a child with multiple disabilities...especially physical. Plain and simple, if the external hardware does not stay attached to the magnet, the CI won't work and Tessa won't hear. Obviously this is a challenge for any infant or toddler with a CI since they ride around in carseats and strollers that can rub on their head, and it's also difficult to teach them to leave it on when it's just too tempting to reach up there and pull it off.
Well, Darin and I (with the encouragement of Tessa's fabulous PT) choose to believe that Tessa will not be in a stroller/wheelchair/whatever-it-may-be, indefinitely. There is obviously the consideration of her need for a headrest temporarily and how the headrest could impact or interfere with the connection of her CI hardware, but the cochlear implant was a permanant decision and we did not want to make a permanant decision based on a temporary scenario. Besides that, there are a million options for headrests for Tessa...plenty of which will accomodate the placement of her CI.
Relevance of "X's"So, the picture I posted of the two X's drawn on Tessa's head before surgery, was a huge moment for us. We had to take Tessa's headmaster collar and an i2i headrest with us to the hospital to help prove that it was not necessary to do some crazy placement of her CI magnet to accomodate her physical needs. We just didn't feel that having the magnet positioned all crazy-like, more on the side of her head and closer to her face, was an option. Obviously, the further back the magnet, the less noticable it will be over time as her hair grows in and gets longer and the easier it will be for her to wear headbands or bows or to pull her hair up into a ponytail one day maybe when she's ready to cheerlead or hit the basketball court. We did just make a permanant decision for our 14 month old daughter that will impact her physically, mentally and emotionally in all her years to come.
All of the elements of consideration in this one scenario have been enough to cause some pretty intense emotional turmoil. I understand that we are driven by our experiences. And it is obvious to us, in this case, that a doctor's experiences in dealing with children with multiple disabilities such as Tessa's, might be less hopeful and less optimistic then desired. Tessa is not to be sold short...she is not to be put in a box and labeled as anything...she is not to be treated in such a way that is a result of someone's own negative experiences. Tessa deserves every opportunity in the world to achieve whatever her heart desires. Tessa deserves every single ounce of motivation and encouragement...all the way down to a tiny little magnet under the skin on her little head.
And Thus The Paperclip:When we removed the bandages on Monday evening we weren't sure exactly what we'd find. It all made me a little squeamish...but more the idea of it all than what it actually looks like. Since they didn't shave any of the area around where the magnet was placed, you can't really see anything but you can feel it and there is still quite a bit of fluid and swelling in the area. From what we were feeling, it seemed like the magnet was actually even a little further back than the second "X" that we had agreed upon right before surgery. I haven't spent much time examining the incision, it looked like it was healing fine, so we've been more focused on Tessa's pain level and such. So, Tuesday afternoon we went to our weekly AV therapy appointment. Ms. Tami was super excited at how well Tessa was doing and asked if we had been able to 'find' the magnet. I told her I had felt around a little on it, but that it was kinda weird right now, so we didn't really know exactly where the placement of the magnet ended up. Well, Ms. Tami (with the most tender approach) asked if we would mind if she put a paperclip up to Tessa's head so we could locate the magnet. "Hilarious"....we hadn't even thought of that and after chuckling a minute...watched as Tami got a paperclip to attach to Tessa's head.
These Kinds of Posts are Exhausting:Okay, so it took me forever to get to the point of the "paperclip" as titled in this post, but there was a lot to cover behind the story and the emotion of this experience. There was some relief in finding the magnet and realizing that it seems to be in a great position, and there was humor in realizing we could have found it with a paperclip...but who'd have thought! I even came to work yesterday and told that story to a few people and shared a few more laughs. Even laughed about not getting too creative about it around Parker so we don't end up giving him any ideas. But last night...the humor and the laughter turned into reality and tears.
I haven't had too many of them...but I consider them my "hard cries". They are the times that are usually surrounded by stressful situation after stressful situation...crammed full of emotion and combined with exhaustion. The kind of cries where I find myself telling God..."you got the wrong momma for all this". There's never enough time to write about all the things that lead up to these moments and I find it difficult to express myself. To write or speak the words about the tears that come with having a magnet in my daughter's head...seems to make it trivial, while the emotions of reality and acceptance are so intense.
I didn't expect to hit such a low. There was so much wrapped up in the surgery and recovery, that I guess now that it's all over, the bottom fell out for me. We have two weeks from yesterday until we get to experience the results of this event in Tessa's life. Two weeks that are suddenly feeling impossible to face. I know the goal, I know the purpose for everything we have put Tessa through...I know it, I get it...it's a great and wonderful thing. But for now, for some reason, a funny moment with a paperclip, has begun to feel a bit cruel.
Now I know Ms. Tami reads this blog...so let me just say...this has absolutely nothing to do with what Ms. Tami did...nothing! She couldn't have been more kind, more compassionate, more sensitive in asking if we would like to use a paperclip to find the magnet. The moment has just become more about the entire reality of the situation.
Celebration Is Near:So, activiation day is June 22nd. I'm definitely on the roller coaster of emotions, but I really am so excited to have this time of celebration and to get to be surrounded by all of our family. I'll move past this time and into the realm of hope and peace that God has for me!
~Whitney
