I’ve had a lot of people say some really nice things. They say I’m strong or doing so well under the circumstances. Those words really do mean a lot to me. I appreciate them more than I can express. However, I want to make sure not to give anyone a false sense of reality. I’m not going to start lying on here and try to act like I’m super positive and happy all the time. That’s not real. Not even close. 
No matter how much I love my girls, live in the moment, try as hard as I can to fight, ‘stay positive’, everything hurts. I had no idea life could be this hard; getting out of bed is a struggle. Putting on actual clothes, brushing my teeth and leaving the house is the exception. I had no clue the world could be so dark. Blake’s diagnosis cast an enormous shadow over our lives, over our family. Of course, there is still a ton of light, but it is often hard to see. No matter what the darkness is always there. It’s everywhere. It hurts so much I can hardly bear it, every single moment of every single day. I never forget that our time with Blake is limited, very limited. I cry every day. Sometimes I cry all throughout the day.
I am always afraid. I’m afraid to watch her decline. I’m afraid I won’t know what to do for her. I’m afraid to say goodbye. I’m afraid to live without her. It feels like drowning. I’m constantly struggling to reach the surface so I can take a breath. The problem is there is no surface. I can never escape the finality of having a child with SMA type 1. I can’t forget because my heart won’t allow it. Sometimes that helps me to live in the moment; other times, I am certain there is no way I will survive this.
I find it difficult to be around healthy, happy families. It’s too hard to have passive conversations, even with those I love. Something as simple as a baby’s first birthday party makes me sad; I feel raw, horrible. The pit in my stomach opens up and I feel sick. I’m jealous, but mostly I’m angry because my baby probably won’t get to have that. Don’t even get me started on parents’ complaints about their child making a mess, finally walking and having to rearrange their living rooms because their child is getting into everything. Get real: Those are not problems! What I wouldn’t give to see Blake make a mess!
I know these are regular conversations; I’ve had them myself, tons and tons of times. I’m happy for my friends and family. I truly am. Most share their news with me with the best of intentions. I love the fact they can enjoy things like their child’s birthday; that’s a blessing. I also do my best to keep in mind I may not know what trials someone else may be facing. I realize people at the grocery store don’t understand why I’m rushing or why I’m impatient. I don’t like to leave Blake ever, really. I move as fast as I can to grab what I need as quickly as possible. People probably think I’m a rude asshole.
My world is only right now; today. And it sucks; it sucks really bad. Trying to navigate through life, even by the minute sometimes, is almost too hard to handle. I don’t want to be that someone who can’t listen to the happy stories or feels nothing but despair for milestone occasions. I just can’t do it right now; it’s too hard. Honestly, it feels impossible. This is never where I thought I would be or where my family would be. I fucking hate it.
I’m sure this is uncomfortable for some of you to read; I get that. Something pushes me to share the truth, even this horrible truth. It’s my real day to day. I feel like I would be doing my Blakey a disservice by not being honest about every aspect of this experience. She is so important and we are very, very proud of her. Sharing our life is what we will continue to do.
Still Finding Sunshine 
Ah, Stephanie, you are so very real and so very right-it sucks something awful. My heart goes out to you all and can say only that I love you and yours so much. Wishing you some peaceful moments, Sweetheart…..
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How I wish I could take away some of your pain Stephanie. Thank you so much for sharing it with us.
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Thank you for sharing this. What you are going through is absolutely unimaginable.
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I’m so so sorry.
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We’re with you.
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Stephanie with each post I feel your pain, if that’s at all possible. My heart aches for you & your family, your every day life of the unknown. Please know all of you are loved very much, you are in our hearts, our prayers, and our thoughts every day. Blake is such a beautiful little girl, her facial expressions show her love for her Mommy, Daddy, and Kenley, you are providing her with so much more love than most can handle. Keep being real & sharing Blake’s story, for it is your true story & testament of unconditional love between a Mother & her child. We love all of you, and may God hold all of you in his arms & give you strength to get through each & every day.
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“I just can’t do it right now” is exactly right and it’s ok. You do what you are able to do, acknowledge that it IS enough. I’m sorry for your pain, I’m thankful you have your family to lean on. You may not feel it, but you are stronger than you know, it shows in every picture and post you share. Sending love to you every single moment of the day❤️
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Hi Stephanie,
I’m a friend of your Dad’s, I’m so sorry for your pain, but appreciate your honesty so, so much.
Rich
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Your nephew Kellan goes to my school and I am the director. When I heard of your story from your sister my heart just cried out. I was so happy to hear that you reached out to Jenny. Your story is hard to read because no one can even imagine the pain you are going through and it pains our own hearts. I have been praying for your family and I will continue to do so. I pray that Blake will be comforted in God’s arms and that He will wrap his wings around your family. I will continue to read your postings.
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Stephanie, I have been thinking about this post ever since I read it about 11 hours ago,thinking what I could possibly say about something so honest and raw. I hope it helped you to get all of that out. “They” say it helps. I think those things you are afraid about, that you don’t know now how you will handle, you will handle just like you’re doing now. You may not think or feel like you’re handling it but you are and you will be. I remember when a friend’s brother who was in his 20’s was killed in a motorcycle accident and she told me she was in physical pain from the shock and grief of that. I don’t know about that kind of pain personally, but she helped me to know what I do know and that’s what you are doing. I thank you and I love what you are doing here. I wish so much this wasn’t happening. Being present is difficult for everyone, it’s a learned skill and you are certainly learning it. Love and support to you and your sweet family.
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Your blog is a pain too deep to fully comprehend, I’ve read and re-read and each time, my tears fall a little harder. I don’t know Blake but I do know I Love her. Thank you for your strength and courage Stephanie, to share your beautifully expressed journey~
I say this with the most respect and honor I can….
“Listen softly to each breath you take, inhale deeply, exhale softly. Some days will be hard…and some days will be harder…” There will some days of ‘What If’s’ and ‘Should Of’s’. That’s okay, walk in those days. Hold them as YOU need. Embrace the moments you need, and let the others be carried upon memories of times past”
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Hugs & blessings. Keep being honest, we’re here for you.
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