Well it is November 30th and this will be my 25th post for the month... which given I had only written 17 for the whole rest of 2012 is quite impressive. I decided to do this whole blog a thon for a lot of different reasons and some nights I found it hard and by the end, I just had to give myself some nights off but it has been a really good experience. It has helped me to process my thoughts during a busy and emotional month and it has made us feel so much less alone and more surrounded with love and support. So I am really glad I have blogged so much more and while I won't be putting any pressure on myself to write daily posts now, I will be keeping it pretty up to date through Max's surgery and all the adventure that the next month holds.
A big part of writing this blog for me, on top of keeping people informed, has been about finding my voice. When I started the blog over a year ago I knew I had a unique story and I was already starting to see that I had children with ongoing medical and developmental needs... but I had not really embraced the idea of myself as a 'Special Needs Mom'... the magnitude of everything had not yet been revealed and I was seeing it more just as a way to update medical info. Now a year later I have one child with mild to moderate hearing loss and major eating issues and another with severe CP and immobility and I know that I have a distinct role and voice as a special needs parent. And I'm working on finding my voice and figuring out how I want to use this role that God has placed me in. Of course there is figuring out how to actually be Max and Addie's mom and meet their needs but I also feel there is a public role to it. Perhaps because I am a teacher, I know I want to teach other people about Max and Addie, I want to educate people about children with disabilities, I want to advocate for my children and for others like them and above all else, I want to use my words and my story to show everyone how beautiful and amazing and strong Max and Addie are. I want to make sure that people who see them see through the eye patches and hearing aids and delays and can see their precious hearts and strong heroic spirits.
My voice is still a work in progress. I haven't even worked out exactly what I want my message to be. I know I won't ever be the person who says I am glad that my children are/were sick because I still know that if I could snap my fingers and give Addie back her hearing or give Max the ability to walk, I would. But not because I want them to be any different or see them as anything less than perfect... just because as a parent I would want to take away their frustrations and difficulties and needing hearing aids or being wheelchair bound are difficult things for a child to face. So I don't relish or celebrate the disabilities. But I don't resent them either. I'm not angry or jealous and I don't waste a lot of time living with 'what if'... my children are exactly as they are meant to be. And they face things that are sad and hard but they have also been blessed with these amazing fighting spirits and they have so much resilience and joy and I can also see how even at their young ages, what they have been through has shaped them into more amazing little people. So I am not sure what my message is other than I'm thankful for Max and Addie not because of their disabilities nor would I say in spite of them... I just love them like any parent loves their child, exactly as they are.
And I'm not sure to what extent I will decide to be an advocate for children or people with disabilities. I know I haven't really explored that role a lot yet but even without consciously deciding to take on certain platforms, my experiences have changed me and change how I see things. I know that a couple years ago I would have hardly noticed when one of my students uses the 'r word' and yet now it feels like a punch in the stomach so I do stop and explain why they shouldn't use it. It's not a deliberate goal or agenda, it's just that my children have changed the way I look at the world. And so maybe I will get to use my experiences to help raise awareness and appreciation for causes for other children and adults living with mild or severe disabilities. Maybe I'll get involved in programs or fundraising or support groups. Maybe I'll write a book. People do tell me I should write a book a lot and I would love to. I spend a lot of time fantasizing about my book tour and appearing on Ellen! So maybe my voice will get a chance to spread. And I will get to share Max and Addie's story with more people and make some sort of differnece.
But for right now, this is where my voice has found its home. On this blog. Which amazingly hundreds of people read! It's my place to share my journey, to show off my beautiful babies and to open up our lives and let people know more and pray more. And as I develop and settle into my life long role as mom to two incredibly complicated and adorable and amazing little people, I hope I can continue to grow in how I write about and explain our journey. So thank you for reading my thoughts and for showering us with support and love and understanding. It's such an intangible concept by this blog feels like a part of me and it's been such a blessing to be able to share that with all of you.