Monday, May 14, 2012

Being A Mom...

I'll never forget the day that I gave birth to Skylar. As soon as her little body slipped out of mine, they put her warm tiny figure on my chest and I just stared. Amazed. Life just came out of me. I am a mother and it's my honor to take care of this little baby who will hopefully grow up to love and respect me as I teach her how to navigate through this world.

I'll also never forget the day that I held Skylar as she took her last breath. I knew it was coming and there was nothing I could do to stop it. She was a big girl - almost 2 years old. Everything about her amazed me still. I think about how she found such joy and wonder in the life around her. She taught me so much... why would God take her from me? Hearing her last breath and then nothing... well, it was something I wouldn't wish on anyone. It was very clear that her body was an empty shell after that, which soon became purple and cold. There was no life inside anymore and she was gone.

I believe that now her life is in Heaven and she can have it to the fullest. However, I must admit that it really really sucks being a mom without a child. I miss taking care of her, rubbing my hands through her silky strawberry-blonde hair, snuggling together while watching the latest animated movie, or her favorite, Finding Nemo. I wish I could still play with her, make her smile or even better, giggle. We still had so much left to do...

My heart goes out to all the other moms out there who have lost children and have to face this holiday for the first time, and every time after that. It's not easy. Yesterday was a painful reminder of my loss and the emptiness that's filled the hole Skylar left. Thankfully, my husband, family and friends were there to support me and love me.

I am learning that "it gets better with time" is a big fat lie. I don't think I will ever miss my baby any less than I did the day she left me. I am missing a piece of me - a piece of my heart - that I will never get back. I may learn how to cope better over time, but it will never hurt any less while I am on this Earth.

My heart also goes out to all of the children out there who are without mothers. I have to imagine that this day is very painful for you as well. I wish that everyone passed away in a peaceful way from old age, but I know that's not reality and some people have gone through some serious traumatic experiences. I hope you are able to find peace and comfort.

Last year, I had the best Mother's day. My baby was here, CBS news did a story about our family to raise awareness from SMA and highlight us as an "Inspirational Family" which aired on Mother's Day, I got lots of flowers, I felt loved and my heart was full.

This year, CBS did a follow-up story thanks to Avery's Bucket List who brought SMA to the news headlines. CBS has done a wonderful job covering our story and helping me raise awareness for SMA. Here is the video from this year with photography by Tessa Marie:
Here's the link if you want to read the full story.
It was really hard to watch Skylar in a video, alive and breathing with life in those big blue eyes of hers... I was able to see her. Something I've longed for since the day we buried her. I've found flowers and ice cream (or Yoforia frozen yogurt) are my comforts as I've added potted flowers all around our patio and front porch. I already had a hummingbird come visit, which was a nice reminder of Skylar. We called her our little hummingbird because her heart would beat so fast. Dragonflies and butterflies also remind me of her for some reason so I've made sure to get potted plants that will attract them as well :) Gardening is therapeutic for me and allows me to nurture and mother again.

One of these days, we will feel it's the right time to adopt and we look forward to becoming parents again. For now, we're still parents, but just without a physical child and trying to enjoy the time we have as a couple again. Adopting will never replace Skylar or heal the hurt we still have, but will allow us to have a family again and love a child unconditionally as our own, the way that God loves us.

Blessings to all you moms out there. It is sometimes a difficult and thankless job that most people don't fully appreciate, but that's not why we do it. However, it is nice to be thanked and appreciated for what you do so hopefully you had a wonderful Mother's Day and felt very loved. Peace.

Thursday, May 3, 2012

In Honor of Avery

So not much has changed personally for us since our last update, but if you're keeping up with the news at all, you will know that a lot has changed for SMA.

Avery, a little girl diagnosed with SMA type 1 on Good Friday this year, and her family created a blog called Avery's Bucket List. Within weeks, they were able to break through the media bubble and gain awareness that SMA families have tried for years to achieve.

I was shocked to learn that just days after appearing on CNN, Avery suddenly passed away from a collapsed lung which sent her into cardiac arrest. I was stunned and couldn't believe that her life ended so abruptly. My heart goes out to that family and my prayers are for peace and comfort to surround them. Obviously I don't know what the future holds and I am not God (or Heaven would already be here on Earth so we could all be free from suffering, death and sorrow). However, it was amazing to see the plans for Avery's life and death - and their impact on the SMA community.

Just days after Avery left this world, people have come together to donate $154,000 as of this evening to fight SMA through gene-therapy research - plus it will be matched by an anonymous donor up to $500,000!!! Families of SMA has also pledged up to $750,000 to the gene therapy program. Big things are happening and as I said on facebook, we are extraordinarily grateful to Avery and her family for getting things moving full steam ahead. SMA families around the world have been working for years and years to raise awareness and funding - hopefully this will be the momentum we needed.

There is a push for funding for the gene-therapy research and for SMA research in general since it is the genetic disease closest to a cure (according to the NIH). Also, there is a big push for SMA carrier screening for women who plan to be pregnant.

My OBGYN's office is currently offering the testing. I am so thankful it is being offered to women in the planning stages, but I am sad it is being offered to pregnant women. The reason I say that is because it leaves a woman (and spouse) with a terrible decision of killing the baby in the womb or giving birth only to know the baby will die early and the road ahead is rough. I know you can start treatment sooner, and it does give the family time to prepare and start learning, but my personal preference would be to have it happen exactly the way it did for us.

I had an amazing first pregnancy and delivery. My pregnancy was full of joy, excitement and love. My delivery was painful, natural and wonderful. Skylar was beautiful and we could enjoy every second as carefree ignorant parents when she was welcomed into this world. We still had hope for a healthy baby girl and big plans for her future. It was my only pregnancy that I will ever have. I am so thankful that I had a good one.

I would have been so sad to have my first and only pregnancy ruined by SMA. The worry, grief and anxiety might have taken over. I probably wouldn't have been as excited to buy things for the nursery, let alone push her out of me to enter into the world where she would slowly be taken from us.

All that to say, there is a petition that you can sign to get SMA carrier test screening as a standard for OBGYN offices. I have signed it because I don't want another parent to have to go through holding their child as they die in their arms from SMA - a disease that can be prevented through the knowledge of you being a carrier or not. Unfortunately, this petition also allows pregnant women to be tested as well. My prayer is that if a woman did find out she was carrying an SMA baby, she would have it, love it and learn from it. I can't imagine my life without Skylar. I am a better person because of her and our journey with SMA. I know for a fact my life would not be near as full as it is now (despite it feeling empty from missing her).

Sign the Petition!

As always, thanks for keeping up with the blog! Peace.