Tonight Mike & I went to the Hands & Voices meeting held here. It turned out that we were the only family there this evening, there was the lady leading the group (who was the parent representative) and then some other professionals. The meeting was good, it was relaxed and comfortable. There was someone who was watching the kids who got to play and had a great time. The topic this evening was on behavior, specifically any issues that are encountered because of hearing loss. We didn't have a whole lot to add on that - not that we don't have behavior issues, but really Addison is right on track speech wise for her age (she probably says about 15 - 25 words...I can't think of them all but now it's bugging me and I think I'll have to write them down soon). We are beginning to add more signs to our vocabulary and those help as well. Addison is definitely beginning to show her opinions more often, but I don't know that it's much different than it was with the boys.
The conversation did bring up other concerns we had. Specifically how her hearing has been tested. We have had ABRs, but haven't begun booth tests. We would like to do those successfully as soon as possible - it means less invasive procedures (no sedation). Addison is still young though, I don't think she would cooperate yet with booth tests - however, when we left Omaha we had begun even a year ago to talk about introducing play training of sorts into her home visits. We would try a booth test before an ABR and then have the ABR so that she became comfortable and accustom to what would be asked of her in the booth tests. Essentially it would help train Addison or condition her so that she knew how to respond when she heard things during the booth tests. The audiologist who works with Early Interventions was there tonight and after talking said she wanted to have an appointment with us to begin some of that training and trails for booth tests. That is good news.
We also discussed our desire right now to learn ASL (American Sign Language). We want to expand our vocabulary of signs right now. ASL has it's own specific grammar and we wouldn't be using that grammar right now; however we want to increase our fluency with the vocabulary so that we can communicate with Addison at times she isn't wearing her aids (the bath, the pool, in the van, when she's just had enough for the day). We also have seen her hearing loss progress. Do we think that she'll lose all of her hearing? No, but we are also unsure of how profound it could end up. We don't want it to progress and her not be able to hear one day and not be able to communicate. What an awful thing that would be. We just feel like we can't afford to take that chance. Honestly, there are times that having that back up communication method will be crucial and beneficial for Addison. How frustrating it would be for me to not be able to understand what someone was saying to me so I could swim - I don't want that for Addison. We want to learn as a family, we'll all need to be able to have that back up communication. It is going to require work, and time and patience we know but we're excited. We also found out about some resources to help us learn ASL. The school district offers free classes during the school year - we can't do them now but next fall will definitely be going. In the meantime, we're going to find a good book I think and work on practicing and learning two or three new signs every couple of days.
Addison's genetic appointment is next week, less than a week away actually! It's been an interesting journey to get to where I feel I am emotionally. It's hard to describe too. I have gone from anxious and worried about the appointment to feeling at peace. Anxious and worried because there could be news at this appointment that could change things. How it could change things, well that runs the gammet: mild changes such as new medicines or vitamins that will be incorporated into daily routines to severe as in there could be additional progressive effects of a syndrome that would require more specialists or surgeries or challenges. We should have the results from the initial mitochondrial panels back at the appointment and there were some additional tests run as well. We are taking all of Addison's brain images with us for review, we have had all the records from ENT, endocrinology, cardiology, audiology, and neurology sent to her geneticist. It would be wonderful to have a "big picture" of what is going on, how each little thing affects the other things going on. I am hopeful for that. But the truth is that we may have no new answers. We may not have a syndrome to claim, we may not have an idea of how Addy's hearing will progress, it could be that we can only rule out one thing, or maybe not at all. That has also been hard. It's been over a year since we started the journey with genetics. I want everything to be fine of course.
Somewhere in the very near past though I have gotten much more at peace with things. We may not know - we could never know exactly what is going on with Addison medically. We could really be exactly where we were last year. We could also have some "serious" news. But you know, Addison has whatever is going on already going on. "Serious" news doesn't change her - if anything it helps us to be prepared to know how to help her reach her potential. I have finally gotten to where I am at peace with it all. That sounds awful to say - it almost seems like a false statement. We haven't ever been disappointed in Addison, we haven't been upset or felt the need to grieve because of her hearing loss or the other medical things that have affected her life (there's nothing wrong with those feelings, processing through them - we just haven't felt them). I have felt scared, helpless, worried, anxious. The unknown has loomed and has felt like a weight that pressed heavily on my heart throughout the day. The helpless feeling not to change Addison but to protect her from hurts she may feel in the future.
Wednesday night at church I felt the message was for me - I realize I wasn't the only one there - but seriously the whole service I felt like God was sitting next to me with his hand on my shoulder, patting my shoulder and quietly saying "it's okay that you've felt these emotions, do not feel guilty. But child do not fear my plans, be bold and courageous in your faith. Love and embrace the trials that are going to work to glorify me; watch me do amazing things, let your family be part of amazing things." At one point in the service one of the pastors shared a story and the point was that as parents we fear for our children, we wonder "who is going to love my child for them, just as they are." The point was that God asks us the same thing - who is going to love His children? His children, every single person that has been fearfully and wonderfully made; every person that God has made and loves, who's hairs have been counted, tears felt by the Creator of the Universe. Are we loving God's children like He loves them? That question at first stung, it stung my heart because that was a big fear for me - I just hadn't been able to adequately describe it. I do not worry about Addison's future and think she's not going to do this or achieve that - she's going to achieve AMAZING things and have an incredible future. But my fear has been, who is going to love her? Will she have true, unconditional love from friends? I worried about her differences being teased - her hearing aids are much more visible than some other differences we have. Will she be picked on? Sadly, the answer is probably yes she will be picked on, but I unfortunately think that the boys will experience that too. Our pastor shared how differences, special needs can seem to the world like something that changes our role as a parent; but it doesn't really change a thing. Our job as parents is to love our children, to help them reach their full potential and discover the amazing gifts that God has given them, to help them understand that God loves them and made them wonderfully in His image - nothing can change that job description.
So my worries, my fears were in a way selfish. I was afraid I would fail - that I wouldn't be able to be the parent Addison needed. That service, as I sat listening and feeling God's presence just envelope me - I was reassured again that God loves her, God has an amazing plan for her just as He has an amazing plan for each of the boys. God didn't make a mistake...and God doesn't need me to have my own plan all figured out for Addison - He's got that covered I just need to trust Him and seek Him. And you know what, I'm glad God's got it...my heart was heavy and I didn't like that heaviness...it is much better this way.
We will still be pushing for all the specialists that Addison needs, learning more and more about whatever it is we'll be facing; I'll still be the squeaky wheel when I need to be so that things get done in a timely manner despite the obstacles that the medical system here seems to create. Now I just feel like I don't have to worry and be anxious about the future - I can just trust that it's going to be awesome and good because God has promised good to us - He didn't promise it was going to be easy, but I'm going to try to find the blessings in each new trail and obstacle.
And if you read all of that - sorry it was SO long! I needed to get it all out, it needed to be written out - because I know that my stupid human brain is going to forget these things at some point, I will need to reread this and remind myself that I don't need all the answers!
