09 February 2013

hope

i had a hard time deciding upon a title for this blog post. or how i was going to go about writing it. it has been a long, emotionally (& physically) exhausting week. but right now, i am hopeful.

on tuesday ruby was diagnosed with Spinal Muscular Atrophy, Type 2. (SMA) if you've been following along, you know ruby has had gross motor issues & generalized weakness for months. we had waited in anticipation for her neurology appointment & i was almost sick with nerves. well, just two weeks after that initial appointment we received the genetic testing back confirming ruby's diagnosis. for those of you who are not aware of what SMA is a great website to check out is fsma.org.

this week, of course, has been so hard. the first day, i was in shock. speaking to my family was horrible & re-telling the diagnosis opened up the floodgates of emotion each time. at the same time, our families have been amazing. they have basically been the force that has gotten us through the terrifying & overwhelming moments. there have been times when i desperately needed to talk to someone & each call that ended in a voicemail sent me further & further over the edge until just the right person was available & was able to calm me, give me just the right words, & send me on my way, stable enough to carry on for the rest of the day.

but i am focusing on today only. i can't look far into the future, worrying about if ruby will live to go to high school or college, get married or have children of her own. will she be in pain? will she be made fun of because she won't move like her peers? but all i can focus on is right now. if i look to far forward, i get a knot in my stomach & it feels hard to breath.

right now, my sweet girl is happy & healthy. she has her beautiful & brilliant mind in tact & she will stay that way. no matter the trials we will go through because of this disease, T & i will make her life the best we possibly can. ruby has a lot of positives going for her (no respiratory weakness & developed to taking independent steps at one point) so that is very good & means that ruby is starting from a good place.

no matter what, the truth of this disease is that it will make ruby weaker overtime. and more than likely, i will outlive my perfect child. because of this, i am certain i will come here from time to time to curse & scream & cry about what an unfair piece of shit this diagnosis is to our beautiful ruby. those periods of time will show their face in between my attempts to stay positive. but for now, ruby is happy. & healthy. we will pray for and work for a cure and enjoy every moment with her.

8 comments:

  1. Oh my goodness, I was just reading from the website you linked to, and this is very overwhelming. I'm glad you have so much support from your family, and pray you find even more as you reach out to the SMA community.

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    1. hi kiara, thank you so much for your prayers. we feel the support & prayers every day.

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  2. Hey Sis, I wanted to share a link to a blog post by a woman that I have been following almost a year now, since someone linked to her from Momastery. It's Jen's "Do Today Well" post. http://andersonfamilyzoo.wordpress.com/2012/04/11/do-not-worry/

    Of course, it is such a different dynamic as a mom who is facing a serious diagnosis, but I think there are ideas here you might relate to. I glean a lot from her writing and am thankful for her perspective.

    Sending you guys so much love.

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    1. absolutely, lis. nail on the head.

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  3. Oh Dany! I'm so sorry to hear about Ruby's diagnosis! I know it wasn't at all what you were hoping for and I seriously can't imagine what you're going through. My prayers are with you and your little lady. :)

    And I know we only know each other through the blogging world but, seriously, if there is anything I can do or even if you just need someone to vent to, don't hesitate to contact me.

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    1. thank you, Erin. I am so grateful for everyone's (yourself included!) support. happy to have "met" you in this blog world. :)

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  4. Ah I'm so sorry mama. I can't even imagine the feelings that you're experiencing right now. I starred this post in my google reader because I had to mull over what I wanted to say.

    I follow a mama named Tracy http://www.traceytrousdell.com/ who had twins born at 24 weeks and were then diagnosed with CP. I know it's not the same but I thought that you may find some comfort in her blog. It's been a couple years since the diagnosis but she still struggles with the feeling, the loss of their dreams for their boys (which you mentioned in your most recent post) and how to tell people. I find her blog so inspiring because despite the dark days she seems to always find light in it. I hope maybe her blog can help you relate to someone.

    When I first read this I thought ya know, that adorable Ruby is going to have some struggles, but she is so young that she doesn't know any better. She probably never will, she will know she's different but she hasn't experience it and then lost the ability. For now she is a beautiful happy girl with no worries, soak that up. Don't try to stress the future and just take it one day at a time. Try not to let it negatively affect you until the time comes and then it's a day by day thing. If you look at the whole picture you will just be overwhelmed, take joy in the little things each day.

    I will be following your journey. *HUGS!*

    Kayla
    mamanemery.blogspot.com

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    1. thank you for the words of encouragement and support, kayla. it really means a lot to my family and me. it's been a tough couple of weeks, but we still have the same beautiful family with a lot to be thankful for, so it's not all bad, of course. i have checked out the blog you recommended and it is good to be able to see other people who might have similiar experiences and feelings that we do. and i will continue to follow your advice - taking things one day at a time and appreciating each day. it's all we can do. and it's enough.

      thanks again. :)

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