I learned something really incredible over the past three weeks. I am so in love with this kid.
I used to think it was weird when people said they were in love with their kids. It seemed like a strange turn of phrase. I used to think that we are in love with our spouses or partners — but we love our kids.
I found out what it meant to be in love with my oldest child when Charlotte turned 1 year old. That’s when I felt it for the first time. She turned from a little baby into my little buddy. She was fun to interact with, and I saw her personality start to emerge. I remember taking pictures of her eating blueberries outside on the grass. She put a play phone up to her ear — upside down. And, as I snapped away, I thought, “Wow, this is it. I am in love.” I finally understood what that phrase meant.
With Emmy, the road has been different. I was overwhelmed with a lot of information early on that scared me. She was only 5 weeks old when I found out that she has Williams syndrome, and I was really intimidated by what that meant for her future and ours. And then there was a lot of work to do. We had to arrange doctors and call physical therapists and organize medical bills. There was a lot of stuff getting in the way of my connection with my daughter.
These past three weeks have changed everything. When her heart stopped beating and the doctors were trying to save her, all of the other stuff disappeared. I was so purely connected to my daughter, and I wasn’t even in the same room as her. I couldn’t even see her. The doctors and nurses were inside her room, trying to save her life. And I was in the hallway, kneeling on the floor and sobbing.
But the other thing I was doing was talking to her. I named all of her favorite toys and activities. I named family members. I named friends. I begged, “Come back. Come back to me.” There must’ve been twenty people between us and around us, but I felt as though it were only the two of us. That connection, that bond, was so strong and so pure.
As special needs parents, and parents in general, we have many hurdles to overcome and struggles to deal with. Over the past two years, I felt that stuff getting in the way of a pure connection to my child. It felt like baggage, and it was heavy.
Being in this position with Emmy made me realize that I need to focus on keeping a pure connection to her. Yes, she has special needs. And it is important for me to help nurture those needs. I actually love that she has Williams syndrome. The diagnosis has brought many, many wonderful qualities with it. And I love so many of the people I’ve met that Emmy has brought into my life — caring doctors, incredible nurses, excellent therapists, sweet teachers; supportive friends. I would never have met them otherwise.
But, at the end of the day, when I tuck her in at night, the only thing that matters is that Emmy is my daughter and I’m her mom. And that connection is so very strong and pure.
I am absolutely, head-over-heels in love with her.
Williams Syndrome Smile 
love is everything xxx
So true!
Thanks Vanessa! Sometimes I have to remind myself of those exact feelings after I leave an IEP meeting.
🙂
Love love love this…..makes me think of my Everett (2 with ws)and a good reminder how special and blessed we are to have him. So happy she is doing well. We have been praying…..bless you all! Sending love from Wisconsin
Thank you for the prayers! I feel them all the way from Wisconsin. 🙂
Thank you, fellow WS Mommy! 🙂
Amen!!!
Love, love, love this!! ❤
What a beautiful post. We’re all following Emmy and her amazing progress and praying for her!!! Thank you for sharing her story with us. 🙂
Thank you, Cassandra!
This smile just melted my heart 🙂 Cheryl was here yesterday and she said she saw that bunny on the lawn again…we have a special angel watching Emmy I just know it! Xoxo
How true this is. My heart connects to you and your family more than you know! I am so thankful the bond I have with Jacob, but sometimes, like noe, that bond makes it hard. Hubby is at the crib side and I am peaking from behind the crib.
So glad that Jacob is home and doing well!
What a beautiful smile! So full of spirit. You describe the love you feel for Emmy so well, even though it’s hard to put into words. I know you feel it in such a strong way…. I do, too, for my kid and it’s indescribable.
Ditto!!! We have been praying for your beautiful little girl and are thrilled she has fought so hard and come back to you!
Thank you, Maya! The prayers are so much appreciated.
Vanessa, I absolutely LOVE how this is written. You write beautifully and strong and emotionally. Thank you for sharing your and Emmy’s story with us. We’ve not been through these things with our Ellie with WS, but I still can empathize and understand. Blessings to you!
Thank you, Jenny! I’m glad you enjoyed my post. 🙂
This was also true for us with Lily. In the beginning you are so caught up in the diagnosis, the doctors, the issues and the unknowns that I think it’s hard to focus on the beautiful miracle you have been given. Lily’s surgery went well so it took me a lot longer to make the connection you did. I look back on those days in the beginning and I regret that I didn’t know her better. She was my daughter, my baby, and took the very best care of her that I could, but I don’t feel like I really knew her. I know her now and I honestly think she is one of the most amazing people I have ever met. Of course I wish she hadn’t been born with a heart defect, but the fact that she was has brought more blessings into my life than I ever could have imagined. I’m so happy for you and both your girls. You are blessed to have them, but they are equally blessed to have you for a mom.
This is lovely, Betsy. Thanks for sharing!
My husband once told my that he wouldnt change aliyah if he could. I said “WHY!” You want her to have WS????? Than he said if you took the WS from her she wouldnt be Aliyah. At that moment, I GOT IT! Aliyah is who aliyah is and we love everything about her. We have had a couple of rough years with my husbands business he owned going out and than me unable to pay for our mortgage we lost our home. Being sued by my husbands bus. partner cause he wanted money back that he put into the bus. And now that my husband has a new job I lost my job with the state of mich. because of buget cuts after I HAVE BEEN at my job for 23 yrs. I would still say Life is good! Because all that is just stuff! I have Aliyah and she has made us laugh thru the very worst of times. She is sooo very funny and I ALSO am in love with her.
You just wait~ EMMY is going to bring you so much joy. We will cont. to pray for you all. Lisa and Aliyah
Thanks for sharing your story, Lisa! I feel the same way. If you take the WS away, our kids wouldn’t be the same people. I can’t imagine Emmy being any different…
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