With this being Spina Bifida Awareness month, my FB newsfeed has been flooded with pics, posts, videos of different stories of those living with spina bifida. I love it. I love that spina bifida gets some airtime every October. I think its important and I think its good, because really, so few people know what Spina Bifida is and there seems to be alot of misconceptions about it and those who live with it.
The first time I EVER heard the word 'spina bifida' was when my doctor told me the baby growing in my belly might have it. I hung up the phone and went straight to the computer and googled it. As soon as I saw all the google results, I clicked off the page before I looked anymore. I was sick with fear.
We went to a specialist and had a gut-wrenching, 3hr long ultrasound which confirmed the diagnosis. Once confirmed, the specialist gave us an option of abortion ... never an option ... and so he began to talk frankly about the quality of life, or lack thereof, for our daughter who would be born in just a few months. Again, I was completely sick with fear.
Its been almost 5 yrs since Carsyns initial diagnosis. I have learned and grown so much over these past few years. And I know I have changed, for the better, during this time. Its been hard, but its been good. And now, looking back over the last few years, there is so much I wish the scared, 29yr old pregnant me would've known before I first googled that word 'spina bifida' ....
Maybe someone reading this has or knows someone who has a baby growing in their belly with SB or some other diagnosis ... maybe you are scared of the unknown ... maybe this will help ...
Here are the top 10 things the 34yr old me would have wanted my scared pregnant self to know 5yrs ago ....
#1 Your Carsyn Grace is hilarious. She has a smile that lights up a room. Her laugh is contagious. Her eyes are bright. Her will is strong. Her perseverance is unlike anyone you have ever known. She is resilient and her inner strength is palpable. She is full of life and full of joy. She makes you really really happy.
#2 She is stubborn. Really really stubborn. Maddening at times, but you will know that this stubbornness, this resiliency, is a gift from God for her. It will prove to be a valuable personality trait in her life.
#3 She will love you. I mean, really, she will have a deep deep love for you. She will want you to hold and lay with her in bed. She will want you to play dolls with her. She will want you to make lots of snakes and balls out of play doh with her. She will want you to find worms with her and build sandcastles and blow bubbles and go to the park and sing like a fool to her and do the underpants dance ... (you will learn that dance and it will make you laugh for days and days and days).
#4 This. This special needs parenting thing. This is hard. It will be hard mentally, emotionally, physically. It will be hard on every level, in every way. Other people may think they get it, but the truth is, no one can possibly understand special needs parenting, unless they themselves are a special needs parent. Your eyes will be opened to a whole community of these beautiful people. You will become friends with a handful of them and your life will be so enriched in knowing them, their incredible kids, and their amazing stories.
#5 You will begin to really understand what it means to live a lifestyle of celebration and thankfulness. You will live with such a big sense of gratitude for even the smallest things. No longer will you take the little stuff for granted. You will see how blessed your family and your life is. You will very quickly learn not to compare and not to dwell, for even a second, on the things that you can't do, or the things that are harder for your family to do now that you have a child with physical limitations. Rather than dwelling on what is not, you will celebrate all that is. You will indeed find yourself living a lifestyle of celebration. I mean, sidewalks! Even sidewalks are a reason to celebrate! Lucky you! You get to celebrate sidewalks :) You find reasons for celebrations every single day! Everything in your life is going to just look more beautiful. I promise ... even on the bad days, you will live with such a sense of gratitude, and will carry such a spirit of celebration, that everything in your life will become more beautiful and more alive.
#6 Every person in your family will sacrifice something at some point. It won't be easy ... on anyone. But with every challenge, your family will get closer ... and stronger. In a few years, you will look back and you will see how your family is different than most, and how this difference has done something beautiful and special in your kids and your marriage ... and you are all stronger and more unified because of it. You will indeed be family strong in a way you can't even imagine right now, and you will be so thankful for this.
#7 You will learn Gods Goodness ... and you will learn it in such a way where no longer will it be just a concept in your head or a thing that sounds good coming out of your mouth. The truth of His goodness will become a tangible reality for you which will forever affect the way you see life. It will be so real that you will never question Him or His goodness again. You are going to have an intimate relationship with God like you have never known before, and it will change everything in your world.
#8 You will be challenged more than you have ever been before. You will watch your daughter go through things that will make you feel like your heart is being ripped out of your chest. There is no pain like watching your child in pain. You will learn this firsthand. And it will cause you to live with such empathy and compassion for others. You will care more about others and less about yourself. You will become more charitable. A deeper, more true, sincere love for others will be birthed in you. The things that are important to you now, won't be as important to you 5yrs from now. What you walk through with Carsyn is going to give you a new perspective on life and the way it is meant to be lived. And you are going to be so grateful for this change because it is going to bring so much more joy and purpose to your life.
#9 HOPE. You are going to come to understand the true meaning of that word and it will be life to you. It won't be wishful thinking. No, the hope you will come to know and carry will be more real than a wish. It is the confident expectation of good. You will confidently expect to see good things happen in and through Carsyn. You will expect to see miracles. Your face will be set like a flint and it will not matter what anyone else says or thinks or believes about your daughter and her future. The hope you will carry will be bigger and more true than any words that you will hear or things that you will see with your natural eyes. This hope will be as real and life-giving to you as the air you breath. It will fuel your faith. It will change your life.
#10 Hey, 29yr old Jen ... I know you're scared right now. I know you are fighting back fear with every breath you take. But let me tell you something... This girl, your Carsyn Grace, this girl is going to change your world in the most beautiful, amazing way. Everything about you, your marriage, your family, your future ... everything will be upgraded because of her presence. You don't have to be afraid of anything, God is with you. He will lead you, guide you, speak to you ... He will help you every step of the way ... And this sweet baby growing in your belly, she is perfect. Absolutely perfect.
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