Dear Emmy,

Posted on October 31, 2013 by katymanni

Hey Baby Girl. To think I could feel so many things in the last few months all because of you is amazing. Mama used to like it when everything in our life added up and made sense and there were explanations. And I had a hard time for a while when no one could make me promises about you. Now I’m learning that it’s ok to not always know. I don’t always need to know what tomorrow will bring or how we’re going to get through a struggle…I know now that there is much joy in the moment if I am present and not afraid. When I am afraid, I am distracted and I lose time and I miss the blessing.

Emmy, as your Mama I don’t want you to be scared, but I know that someday you probably will be. If I could stand in for you and take all that fear for you, I would. What I can do is pray. My prayer to the One who casts out fear is that you will not be overcome, that fear won’t take the joy from your moments. I pray that when the unknown comes, you will look for my hand on one side of you and Daddy’s on the other and that we can walk together knowing that He has been good to us and we will be OK.

By the way Em, I don’t ever wish that our life was different. I don’t wish that we could go back and change things and have our “old” life back and I certainly don’t ever wish that you were any different. The beauty that has come from the unknown has opened my heart, emptied it of the unnecessary, and filled it back up again with the creative, the good, the hopeful. I have made some of my best changes in these last few months because you, Ava, Jude and Piper make me want to be the very best I can be. You bring us great joy Emmy. Great, great joy.

I love you my gift, my girl.

Love, Mama

Dear Emmy,

Posted on October 22, 2013 by katymanni

Hey Beauty. I wanted to tell you a little bit about your big brother. When Mama was carrying you, he wished and hoped for a little brother. He told me over and over and again and again that he wanted one so badly because he already had two sisters. So when your birthday came and we told him on the phone that you were a baby girl, he was a puddle on the floor for about a half hour. Yep, he was very sad. But then he came to the hospital to meet you…

He loved you as soon as he saw you. He loved you more when he first held your tiny body. He kissed your cheek and it was almost as if he made up his mind right then that he was going to take very good care of you for always. We brought you home and he kept kissing your cheek, laying beside you, staring at you…I think that no matter what he would have loved you, protected you. But I also think that Jude knew before we knew…

I think something (Someone) whispered to Jude’s heart that you were going to need a little extra help in this world and he silently promised to be just that. In the long, hard days in the beginning when your body ached, and you screamed and cried, he held you, shushed you, hugged you and kissed you. He never got frustrated or told you to stop crying, he just pressed his cheek against your cheek and you would find comfort there. I hope that you knew from the very beginning that he was on your team.

I’m so thankful that you have him. I love you baby girl.

Love,

Mama

Posted on October 16, 2013 by katymanni

“Every thing is as God made it; not as it appears to us. We have the world so much in our hearts, are so taken up with thoughts and cares of worldly things, that we have neither time nor spirit to see God’s hand in them. The world has not only gained possession of the heart, but has formed thoughts against the beauty of God’s works. We mistake if we think we were born for ourselves; no, it is our business to do good in this life, which is short and uncertain; we have but little time to be doing good, therefore we should redeem time.” Ecc 3:11-15 (Matthew Henry Concise Commentary)

I needed to redeem time. I needed to do what was good for Emmy. After all, I wasn’t born for myself, but to do good with this life that I’ve been given. When I learned the beautiful mystery of her genetic profile, I had to let go of my perception that “normal” is the only “good” for my children. I had to choose to see things differently…hopefully a little more like the way God sees the things He creates. My intention for this blog is not to focus on all of the specific medical and developmental issues of Williams Syndrome, but maybe you are wondering what specifically Williams Syndrome is and what it means for Emmy. Maybe I could take one post to glimpse into the intriguing world of her DNA. At conception, part of Emmy’s 7th chromosome was deleted. Pete and I are not carriers of Williams Syndrome, the deletion happened spontaneously. If we were to have another child, they would likely not have WS. Specifically, Emmy is missing about 26 genes, one of which is the elastin gene which keeps our blood vessels open and flexible. The deletion of this gene is why so many WS children have significant or life threatening cardiovascular defects. We are so grateful that as of now, Emmy’s heart is healthy. There is a long list of other physical struggles that WS children as well as cognitive and developmental delays. Because it turns out that missing just a few genes affects almost every part of a person’s well being. If you missed my first post, here is a video that that gives great insight into the world of Williams Syndrome. http://www.williams-syndrome.org/ws

Emmy will be making her way through this world that is often not inviting or compassionate to “different” and it does break my heart that there will be difficult times for her. There will be things that she will face that my other children will not have to face. And of course, her struggle is not unique. There are many kids with special needs that are trying to make their way. I think we can make their journey a little easier by taking a deeper look into their profiles, embracing them for who they are and what they offer this world which so desperately needs to redefine beauty. I sound awfully preachy…next post will be another letter to Emmy. 🙂

Dear Emmy,

Posted on October 9, 2013 by katymanni

Hey love. There were so many things that Mommy wishes she wrote down in those uncertain days in the beginning. I’m going to do my best to remember…

Em, there were times when Mommy was scared and hoped that you wouldn’t have to struggle. I hoped at first that my heart was wrong and that you didn’t have Williams Syndrome like they thought. But something happened in my heart during that time. I stopped hoping Williams Syndrome would go away and began welcoming it. After all, it is part of who you are and we are smitten by you. How could we hope that you’d be any different? I welcomed it because now I saw life with different eyes. When Ava read a book or did an amazing art project, I noticed. When Jude ran and climbed and rode his way around the neighborhood, I noticed. When Piper laughed, I noticed and laughed with her. I put down my phone and noticed life again.

Something else happened Emmy. You helped me find my words again. I used to love to write and when I was younger, I did it well and often. But I got distracted and tired and busy and couldn’t find the words anymore. Now there were so many things I felt and thought and loved again. Part of me woke up from a slumber because now life wasn’t certain or easy and I noticed the big and small and in between. Emmy I love your wide grin and dark eyes, your little toes and your long hair. I love the way you lay your head heavy on my shoulder and the way you scrunch your nose and squeeze my hand.

I love you my baby girl. Thank you for you.

Love,

Mama

If I’m true to myself…

Posted on October 5, 2013 by katymanni

I have to remember the sorrow. Because there was sorrow. I’m now acquainted with grief. If you had asked me before Emmy’s diagnosis if I knew about hard times, I would have said yes. But there is something different in this kind of grief. In the days and hours after the words Williams Syndrome first entered our lives, I had to remind myself to breathe in and then breathe out. I couldn’t say the words, couldn’t let them exit my mouth because they represented a reality that was very difficult to accept. I say that I have known for some time that something was different and unique about Em, so in some ways when the genetic doctor first flipped over Emmy’s perfect little pinky finger to show me that there was one small crease there that represented something potentially very big, I felt…relieved.

This picture is from that day. August 2nd, 2013. To try and explain the many emotions that were underneath my smile would be impossible. I remember telling myself, “Don’t cry yet…you’re going to want to remember what they say”. There was also a strange sense of happiness in experiencing this very intimate moment with my daughter…the moment that we first “knew”. There was intense devotion to her in that moment…because I knew she would need it from me. There was a prayer uttered that went something like, “Please help me be grateful, please help me be enough, please help me see what I’m supposed to see…Jehovah Jireh.”

I revisit these moments not because I want to make life harder for myself but because I think there is much value in accepting the hard and unexpected things in life that you can’t change. We spend a lot of time removing hardship from our lives, from our children’s lives. And of course sometimes this is the right thing. But other times, we can miss the joy in the journey. We miss the way God meets us in that moment of sorrow and brokenness and provides things we didn’t know we needed and didn’t even know to ask for. It’s good for me to spend some time remembering.

A note to my readers: I’m still working out how to make my blog look nice…I just focused on getting the words up first. 🙂 It’s a work in progress.

Dear Emmy,

Posted on October 1, 2013 by katymanni

Written on August 6th, 2013.

Hey Pretty Girl. We’ve had a long week. On Friday of last week we got a call from Children’s Hospital of Philadelphia Genetics and they said we could come for a last minute visit to see if the doctors there could figure out why it’s been a bit hard for you to get moving…

To make a long story short, we learned something about you that day that has been here all along-we just didn’t know your beautiful secret. Emmy, you were born with Williams Syndrome. Williams Syndrome happened to you when you were still being formed in my belly and is something that most people don’t even know about. The way I see it is, God set you apart so that you could show the world His Glory, His Grace, and His Goodness through your journey. Our journey. Daddy, your siblings, and I will all walk it together with you so you’re never alone. You may struggle at times but we will have many blessings to count, all because of you. Emerson Kate, I want you to know how very much Mommy and Daddy love you and have always loved you. In fact, I think we may love you more now. I’m thankful for you. I’m thankful for Williams Syndrome. I’m thankful that we have the great privilege of traveling this journey together with you.

You are so cherished, so loved, so delighted in.

We love you Emmy.

Love,

Mama

“Williams Syndrome is a rare genetic disorder that is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities, and an affinity for music.”

http://www.williams-syndrome.org/ws