a sweet experience

My cute neighbor Rachel called me a week ago and said that she had been thinking of ways to help out our family. She coordinates weddings and decided to talk to her favorite vidoegrapher, David Perry to see if he would make a film of our family. I can not tell you how much that touched me. I was crying so hard when I told Quinn I think he was scared at first that something was wrong. I am always amazed by how sweet people can be and it always is so nice when they reach out to us and Lila. Thank you Rachel!
Before David got there I was fretting about not catching any smiles. Lila has such a sweet personality but she is the worst performer! She has been having a good stretch the past few days, smiling and laughing but when she doesn't want to smile there is nothing you can do to get her to crack one. I sat and prayed that Lila would show the camera a few smiles so that we could catch them for the future. Right as David was suppose to show up I could tell Lila was going down. She was sucking her fingers and her eyes were rolling. She was a sleepy kid. I was so disappointed. I thought sure she never sleeps except when we do family pictures (we didn't catch one smile with Lex) or this film. I was so bummed I hate to admit that I made an angry comment to Quinn such as, whats the point of praying if you never get helped out? As David set up I was so sad to know there wouldn't be much to shoot. Just as David got set up and pushed the on button I pulled Lilas fingers from her mouth. Immediately Lila's eyes shot open and she looked right at the camera and gave several HUGE smiles. She smiled for several seconds and then was done and didn't crack even a grin the rest of the time. Quinn gave me a pinch and said, you were saying? I was so grateful I was holding back tears as David told us that he caught the smiles. Good lesson for me in not giving up on the power of prayer.
All in all it was an amazing experience, David shot us playing and kissing Lila and even filmed us talking about her - you can just imagine how that went, I hope you can even understand me through all the blubbering- I can't wait to see the finished product. I will hopefully figure out how to post it here so I can share it.
Another cool aspect of the day was meeting David. He is an amazing film maker who is also an incredible person. We actually just sat and chatted after filming about his experiences and his life and I was blown away by his faith, his dedication to the gospel and to making peoples lives better. I was truly envious of his unwavering faith. He and his wife are trying to adopt a little girl from the Ukraine who is HIV positive, the government is giving them a hard time but he has faith that everything that is suppose to happen will. That is a concept that I am struggling with. He was so kind. I mean here is a guy who is doing fundraisers to adopt his daughter and yet at the same time he is donating his talents to help us remember our sweet angel. He also makes films that he shows to the UN about adoption and the struggles of international orphans. He was named in the top 25 international best film makers for events so anyone getting married should snatch him for their wedding! Please check him out here.
Thank you David! We really appreciated all your time!

Cute Grace

This just made me so happy. As I have said before Lila and her cousin Grace have a special relationship so when Gracie made her star of the week poster I shouldn't have been surprised that somehow Lila made the list. How adorable is it that her favorite thing is to play with her cousin Lila? so sweet.

sugar overload.

Lila and I wanted to surprise Quinn with doughnuts and balloons at work on his birthday. After we went to BamberryCross to get a dozen and a half yummy doughnuts (wanted to share with co workers) we got a call from Quinn, he wanted to tell me the funniest story. His mom had surprised him with breakfast pullaparts that morning and while they were polishing them off and all discussing how they couldn't eat another bite Marissa, his sister walked in with another plate full of yummy pullaparts. Crestfallen I told him I was in the parking lot with doughnuts about to walk over to Smiths to get Balloons. I guess we were all on the same page with this one. At least Quinn knew people were thinking about him on his day!

Happy happy 31st love!

Happy happy birthday my penquinn love!
Quinn, I love you so much. I hope that you have a wonderful birthday and that you know just how amazing you are. You have made my life beautiful and so full. I am so lucky to have you. You make every day better. I am always in awe of how you handle whatever life has thrown at us and you have done it with such grace and strength. Thank you for all you do for me and for everyone around you. You truly are incredible.

dragon Moms (I like that)

Dear Michelle sent this to me today and it obviously struck a chord with me. I think she tells it so eloquently and with so much truth that I thought I would share.

Notes From a Dragon Mom

Alexandra Huddleston for The New York Times

Emily Rapp and her son, Ronan, who has Tay-Sachs disease.

By EMILY RAPP

Published: October 15, 2011

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

A year ago today......

A year ago today I held back sobs as Lila's ophthalmologist told me that she had bilateral cataracts. -I can't believe that it's only been a year. It seems like we have been "primary parents" all our lives, dealing with doctors, tests and illness.- Gone was the notion that I had a perfectly healthy and normal little girl. The days, weeks, month and year to follow continued to have more and more bad news. Never could I imagine at that moment just how horrible it was going to get. It was far worse than my worst nightmare. It seems like we haven't hit that bit of good news that our family is so desperately hoping for.
With learning to deal with constant mourning I am trying to focus on just how blessed I really am. Despite it all we are so blessed to have Lila. With each smile I am filled with gratitude that she has come to our home. I am so blessed to have Quinn. For the rock that he has been. For being the most compassionate, patient and loving man in the world. I couldn't believe that we could grow closer than we were but this has brought us even more together. I am grateful for wonderful family and for good friends, you quickly find out who your true friends are when going through something like this. Thank you to all who have reached out, I know I probably don't make it easy sometimes. And finally I am so grateful for the knowledge that my daughter will look at me one day and know that I am her mother and she will be able to show her little personality to me more fully, not in this life but in the one to come. I look forward for that moment.

Just like mommy

Sugar daze?
Lila's first candy sticky face.
I put this chunk in her mouth and she laughed out loud!

since Lila can't take anything by mouth we are trying to introduce flavors so that she knows that her mouth can do more than chew on fingers. Usually she hates everything that i put in her mouth to taste but today I found a winner. Cotton candy. She loves it, just like her momma. She was laughing and kicking and rooting for more. It was super fun.

The Witches

Lila loves the sun. Every time you take her out she shuts her eyes tight but gets a huge smile. This is at the end of a smile. They are hard to catch sometime...




Lila dressed up like a ballerina to go look at the witches. She has another costume for Halloween. We are going all out this year. I never know if this will be her last holiday so we have to make them count. Quinn says I'm being a bit dramatic when I say that but its the truth.

I LOVE my moms Halloween sweater. It brings back my childhood.

Its was our annual witches hunt! I love Gardner Village and it was the most gorgeous fall day.
I must admit this year was a bit rough for me. Last year when we went to Gardner Village we had just found out about Little miss's cataracts and I was really down (remember the cute yellow glasses?) but I kept thinking I wish I could see to next years witches trip because then I could see how much she can see and that she will probably be ok, and she will be able to enjoy all the cute decorations. Never in my wildest dreams did i think that there was more going on with my precious child, that we would be where we are today. I guess its a good thing we can't see our futures. It does make me really nervous for what is to come though.
Regardless Lila was the prettiest little ballerina, and I was in awe of the beauty of the day.

Robyn's quilt group

A couple of weeks ago I asked Robyn if she could help me make some cute Quilts that I could use to put Lila on when we are out and about. She was so sweet to make it her next quilt group project. Lila and I went over and met the ladies while they were making them today. The women were so nice and the quilts were adorable. Thanks so much!

Flashback 2005!

Look how funny! Tory sent this picture to me a little bit ago and I thought that I would post it so that I can add it to my scrapbook. This is back the year we got married, 2005. We look like babies. Tory, Mo, Quinn and I headed down to Las Vegas for a weekend together. We did synchronized swimming in the pool (I probably shouldn't admit that, but it was really fun) walked the strip, ate yummy food, saw an interesting show and got these airbrush tattoos of our significant others initial. Thanks Tory for sending me this!

The Zoo

The last trip to the Zoo for the season! Thanks mom and Kelli. Little miss looked perfect for the occasion. -Thanks miss Grace for her cute outfit ; )

Kimball Family Pictures

I tried to get more pictures to download last night, they never did and these ones took forever!! I could only get these two to post. Luckily they are my favorites! Poor Lila was not happy at these pictures. But they turned out great. Love you Kimball's!!! Thanks for being such a wonderful family. We couldn't survive without you.