Let me tell ya, it was already shaping up to be the worst day ever. I took Clay to the doctor in the morning for a check-up. As soon as I got into the car I felt a wave of nausea. I drove twenty feet to the gas station where I couldn't even make it out of the car before I was getting sick. And then I proceeded to get sick at the curve. My dress was soaked. I was a crying mess. It wasn't 30 minutes later when Clay did the exact same thing. Let's just say, I was already in survival mode that day. Looking back... of course I was. I am a very intuitive person. I was four hours away from getting life-changing news. I think part of me already knew and my sub-conscious was coming to the surface. When my ultrasound that day took way too long and when the technician didn't say anything... I kind of had a sense of something.
And yet the words hit me like a freight train.
They knocked me off my feet. And I can tell you that I left a part of myself on that doctor's office floor and if I ever returned to that room again, I think I would quietly shut the door and lose myself on that floor again. I would cry for that part of me I left behind. That girl was naive, but guarded. Entitled while incomplete. I feel sad for that girl for she didn't know what she had when she had it. I wish I could have shaken her and said, "You have everything right in front of you to be happy-- truly happy." And when things did not go her way, she was devastated. Let me tell you... I am so glad that part of me was left behind. I got a second chance at my happiness. The process was was ugly and forced and difficult. When I left that room, I was very much broken. There was a gaping hole from the me that was gone...
A year has passed. Today, I let myself become swallowed in emotion as I read and reread our first e-mails to friends and family, our letters to our children before Lilah's birth, our letter to new parents of a little one and Lilah's birth story. There is still pain there for me. Pain in remembering how it felt to hear those words. Pain in the fear of the unknown. Pain in the future suffering we did for her. But mostly, I wince with pain and sorrow for the time where I didn't understand how wonderful this news was for our family.
My doctor said exactly a year ago today, "In one year, you are going to wish nothing was different."
Those words were empty to me then. In my mind, they were borderline offensive. "How is this guy going to tell me how to feel about this?" I couldn't make sense of them and I certainly didn't believe him. In hindsight, I imagine I thought, "Well, I suppose we will get use to the idea and this word will sting less and less each time we hear it." I had NO idea exactly HOW much these words would be a positive influence on our lives. At the time, I could have never imagined that. What has unfolded in the last year has been truly astonishing and nothing short of a miracle. How much we have changed, how other lives have been affected by this sweet girl, how many fabulous people we now have the pleasure to call friends, how she really is moving mountains. It is unreal and everyday, I have moments where I am left in complete awe of the whole situation. One year later... we can proudly (and loudly--we want to shout from the rooftops), "WE WISH NOTHING WAS DIFFERENT!"
I am giddy with life. Seriously giggly and smiley and punch-drunk-love kind of giddy. I am the happiest I have ever been. From a year ago to being pushed off the edge into that dark ravine where I was scared out of my mind and hollering for help, to turning around and having the courage to take steps forward to start the journey of "different than expected," to learning how to be grateful for the journey and finding beauty in the growth along the way, to being so overwhelmingly thankful to God for having the opportunity to go on this journey in the first place. There is so much peace in allowing Him to choose our path for us, accepting our role given to us by Him in this life and loving everything along the way.
At ten-months old Lilah is such a light in our eyes. She is so perfect to us and we are beyond smitten with her. If you were to meet her, first you would notice her eyes. They are like reflecting pools. You can see the world in her eyes; they are so deep, soulful and mesmerizing. Next you would notice her smile. You would think you were special because you made her light up and giggle and grin. I would not tell you that she is like this to everyone. And then you would notice her personality. She has so much spunk and fire and ambition. After being with her for a few minutes, you would already know that she is going to be a leader, do great things and go after what she wants. She is getting ready to take her first steps and in the next couple of months we will get to witness her walking. It's like she's saying to the world, "I got this... don't worry about me."
And while I think I should have been happy all along... it was really her that I needed to be complete. We needed her to find ourselves and although we feel many steps closer to where we are going, we know we have much more in store for the future. Our work is just beginning.
And to you... my family, my friends, my readers, my cheerleaders, my fellow-mamas, my lpa community, my hometown, my new town...you. I think I shed some of my biggest tears for you today. Why on earth you have embraced us like you have, I will never know. The outpouring of love, the additions to our village, the safety net created... you are a part of that. On days where you feel less than worthy...just remember how much of a difference you have made in our lives just by reaching out your arms. You are important. SO important to us.
I still try to take this one day at a time. But, I don't fear the future anymore. I look forward to it. I have her. I have them. I have all I ever need.
God bless you and thank you for being a part of our story. Just by reading you are helping our advocacy to spread awareness to dwarfism. With October being Dwarfism Awareness Month, I will be talking a lot more about this topic coming up. For now, we are grateful for our 365 days of growth and we look forward to celebrating with our hometown this weekend! XOXO
Photography by http://www.michelletiekphotography.com/
Beautifully said. every. word. I have tears in my eyes, you have touched my life by sharing her with all of us, and your story. You have brought an awareness to me that was missing before. I didn't know what was an offensive word before I read your blog about dwarfism and using the correct terms. There is a responsibility for all of us to be conscience of these things, and I thank you for the knowledge. Lilah, makes me smile everytime I see her pictures..I just think she is beyond perfect and you are so blessed to call her yours:) in a way because we are all so invested in her and smitten with her ourselves, she is all of ours:)....I don't think there is a person out there that would not be blessed coming in contact with her. I show your instagram pictures to everyone, she brings me such joy and thats just looking at an adorable picture. I can only imagine how much of a joy she is to you and your family. She has such a wonderful big brother too, you can just tell how much he loves her, wants to show her new things and protect her. Your joy exudes from your pictures, maybe thats why you inspire so many. Life is not about being perfect but finding the joy & perfection in the imperfections. Thank you for sharing your story. You all are moving mountains. Bless you and your family, Leslie.ReplyDelete
Dear Randi... thank you so much for taking the time to read the blog and for becoming a strong supporter of Lilah! It means so much to us and we really appreciate all of you kind words and how you have taken the time out of your busy life to write us about ours. It means the world... thank you! XOXODelete
amazing photos and amazing story. Lilah is absolutely beautiful, as are the rest of you...the Light shines through.ReplyDelete
God bless you,
Thank you Laurie! We appreciate your support! XOXODelete
I am so happy to have found you through the Kelle grapevine. You are truly a blessing. And Lilah...oh, Lilah! What a gift she is to all of us. I look forward, and am honored to be able to follow along with so many as we watch her grow and change the world. Onward! Much love to all of you.ReplyDelete
I remember the day we got the call that our doctor wanted to see us about the results of that first ultrasound...one of 47 that included 13 specialists and fetal stress tests every other day. At first they told us our daughter had a condition so serious she wouldn't survive the first few days or weeks of her life and if she did, she would be so severely retarded she would have to spend her life institutionalized...part of me died that day too.ReplyDelete
About 3 months later they told us that she had dwarfism as well. Another part of me died that day as well. I know the feelings of being washed in fear, devastated by the feelings of not being able to protect her from the sadness she would inevitably feel when "normal" society wouldn't accept her, and feeling completely helpless because I didn't know how to be a mom to a child with a conditions that I didn't understand. I also remember being so completely relieved when we heard the word dwarfism because if she did live we could handle that, she would be alive and she would be loved and God always has a plan and we could handle dwarfism.
I cried more in those months of pregnancy than I have ever cried and I prayed without cessation. I prayed that she would live, that she would find peace in her uniqueness, that I would know what she needed and we would learn the rest together. I prayed that she would prepare me just by how very much I loved her.
It's been 6 years for us now but I still remember every appointment, every doctor, every conversation and every prayer like it was yesterday. I also remember those pieces of my self that I lost, that I mourned, but that today I'm grateful to be rid of. My daughter was born perfectly healthy, just pint sized and with a personality that will carry her through the roughest years of her life and an IQ that is off the charts. God always seems to compensate for the things we lack, in physical strength and in character. She is my greatest joy, not only as the baby who made me a mother but the soul who made me a woman.
Thank you for sharing your story. I've told ours many times, especially to moms who need to understand that ultrasound is not 100% accurate and that she's literally living proof to that affect, but to help others to see the world and the differences in people with grace and compassion...and to remember...I never want to forget how life changing those days were and that news was. And I too wouldn't have it any other way.
I'd love to connect with you and be part of each other's lp village!
Gig Harbor, WA
Sarah, Wow! Thank you so much for taking the time to tell me about your story. You truly do understand what it is like! Amazing how our stories are so similar yet different! I am thrilled to hear how well your daughter is doing and I am so glad I got to learn about her. I completely agree with so much that you have said... it's nice to have come so far! XOXODelete
What a year! As always, you describe it all so beautifully. It's so fabulous you have become such an influential advocate - you are really making a difference! RoxieReplyDelete
Thank you Roxie! Love You and can't wait to see you next! XOXODelete
Beautiful article.My son who has Achondroplasia just turned 1 recently . I and wife went through the same emotions as you did. His diagnosis was a big shock for us initially . I could not sleep for few weeks after his diagnosis but now after a year i wonder why i was so worried after his diagnosis. He is just small but otherwise is like every other kid.ReplyDelete
Thank you for reading and for taking the time to write... it is interesting in hindsight to ever wonder why we were so worried, but I believe we wouldn't be where we are today without that experience. God bless you and your family. XOXODelete
Hi Leslie my name is Julie mounet and I want to tell u that I have a 6 year old boy that has achondroplasia. He is a wonderful kid and he is a very out going kid and is always out to figure out how to do something. He is very independent too. Your daughter is so cute and your son. You can email me at email@example.com or u can look me up on Facebook and I can talk to you more or any questions.ReplyDelete
Thank u julie mounet
Thanks Julie... glad to hear your son is doing so well. XOXODelete
We love you and your family as our own! Beautiful post. I hope new parents are reading this and find confidence in themselves. <3ReplyDelete
Love you too mama! XOXODelete
catching up on your blog. love this. and love how life has essentially come full circle for you and you are choosing joy. i mean how can you not?! look at your sweet little lives God has blessed you with. thank you for opening our eyes to the deep love and how different is beautiful. let's embrace this! now i want to hug you! XOReplyDelete
Ma'am.... is it so weird that I think about you and pray for you everyday?!? You are such a light in my life and I just want you to know that. Really want to see you soon! XOXODelete
I have tears in my eyes as I write this. Those words, your courage, your acceptance, everything. Sending my love to Lilah from the Philippines!ReplyDelete
Thanks Carla! Love right back at you! XOXO and love to you!Delete
I read your comment on Patti Rices Instagram post today and clicked over to your blog… Your daughter is absolutely beautiful and your story is very neat to read! Thank you for sharing! :-)ReplyDelete
You are so sweet! Thank you so much for reading our story! We appreciate it! XOXODelete
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