And as for me-- my mind wonders.
It is therapeutic for the words to escape my mind onto paper or the web in this case. I know that this is a public domain that can be seen and read by anyone, but I still have the desire to pour my heart out. It is as though, once the words are placed, the fear, anxiety, etc is released so that I can continue our journey. I have to admit each time I write... the keys are met with not only my fingertips but small drops of water. Like my mom always told me, it is okay to cry. And I do.
Tonight, I have been reflecting and researching. James has grown to hate the word google... it is my home page. I google and google. And I have come to be VERY familiar with the word-- arthrogryposis. I can't even pronounce it correctly, yet it plagues my mind constantly. We haven't received any type of confirmation that this is what we are up against, but my motherly instinct kicks in... I can't shake it. We even met with the genetics doctor, no definite "diagnosis" can be determined, yet. So I allow this word to harbor in the back of my mind, and determine what treatments we should be allowing. The constant that brings smiles and hope is Jack. Jack being himself... and the smiles, coos, stretches and improvements. There are so many stories of children screaming throughout the weeks of casting, splinting, therapy etc. Our little man does it with some initial cries, but is quickly soothe with cuddles and love. Oh to see him smile...
And then there is Miss Avery. I worry that this "process" will affect her even more than lil man. She is the one that sits at the end of the hospital bed watching her little brother in pain. She has adapted to quickly present kisses to anyone who has a "booboo". Her sweet innocence is endearing. May she retain that for a long time to come.
I always expected to teach my children lessons of love, charity, sacrifice, endurance, faith, hope, and optimism.
They teach me.
This past year we have grown-- physically, emotionally, and more unified. I look back at the few short years together and it astounds me the growth and difference of our family.
But the reality of it is-- we have much more growth ahead. May I be wise enough to allow it to change me for the better. Pin It Now!
Hi Katy! I'm an AMC mommy myself. Our friend Tracey is supposed to put you in touch with me! And yes, it's OK to cry. I'm with you sister! 2012 is a great new start and your sweet children are adorable!!!
ReplyDeleteI'm Peg, a mom with a 5 year old AMCer names Owen. You have a sometimes hard road ahead but also the best journey you will have never expected ahead. I was so inspired by the families I met that I am making a documentary about my experience. Know that we are all here for you and always available for questions, venting sessions and support and love.
ReplyDeleteHi, I'm Angie. I'm friends with these ladies above through the AMC support group and Facebook. My 18-month-old daughter has Arthrogryposis in all limbs. We've been through a ton of casting at this point. I cannot recommend Yo Gabba Gabba and an iPhone for future casting and splinting. My daughter doesn't make a peep as long as she has her shows. Casts are the worst thing ever. Once you get through it, though, it'll be awesome looking at those straight little feet. Totally worth it.
ReplyDeleteI wish I could take the pain away, but then I would take the learning and blessing away also. Jack has a spirit about him that will always bring love. You are a great, caring mother that will see to all his needs. Avery and Jack are lucky to have you. Thanks for making James so happy. We love you and are with you through it all.
ReplyDeleteHow neat to already have woman who know what you are going through respond! I love your children so much, that was the blessing the came from me coming to help. They are so sweet and you and James inspire me with your faith and courage!
ReplyDeleteLuv ya!
I'm so happy to see you have support of others Mom's who have been through similar things. It has been a huge help to me to have other cancer moms to communicate. I often felt "alone" even when surrounded by others and having someone who can truly relate has been a huge blessing to me. I think of you all often and send many prayers heavenward for you. Yours is a heavy burden as the heart of the home but you are filling it so well. Sweet Avery will be such a compassionate woman I'm sure. But heartbreaking for them to have to endure/watch such suffering. Love and prayers.
ReplyDelete