Today March 13, 2013,  is Skyler’s 10th month Angelversary. During this time, it’s always nice to look back and remind ourselves of the great things Skyler did for us. One of our greatest reminder is this beautiful letter written by Skyler’s Grandma Sue on her 1st birthday (February 9, 2013). We hope you can also find comfort through Grandma Sue’s words, especially to all other grieving families of angels out there.

February 9, 2013

 

My dear sweet Skyler Sue,

 

Today was your first birthday. I miss you so much, but I know you celebrated your birthday with all the other little babies who are angels like you. I can see you smiling and playing, and I know you are okay.

 

I spent today with you, too. I will never forget the first time I saw you – it was truly love at first sight. You were so tiny and getting used to the outside world was difficult. When the nurses told us you were having seizures, I just wanted to hold you close and let you feel the love that was already flooding my heart and soul for you, but you needed more than Grandma’s love on your first night. I will be forever grateful for the wonderful care you received from the doctors and nurses from the day you were born until the night you became one of God’s true angels.

 

Thinking back, I can’t believe a whole year has already passed since the day you were born. All I know for sure is that you changed me, you changed my heart forever, and I will never be the same. When I am sad or lonely, or had a rough day, or missing you so much that I can hardly stand it, all I have to do is close my eyes and you are there. Sometimes, I can almost feel myself holding you and cuddling you. Those times, first with your Daddy when he was a baby and then with you, were the best times of my life. I breathe you in and your sweet spirit heals me when nothing else can. I know God’s love because of you.

 

A few weeks ago, we had the most beautiful double rainbows and I thought of you. Now, all thoughts of goodness and beauty in the world take me to you, and I know without a doubt that you were one of God’s most perfect creatures because your purpose was pure love – to love and be loved.

 

I will forever miss your physical presence, my sweet Skyler Sue, but you are my heart now and your spirit lives in me in every waking moment. I am so incredibly blessed that I was chosen to be your Grandma. Our lives are forever intertwined and inseparable. I love knowing that; it brings peace and joy that I never knew before you came into my life.

 

So today was another blessing you gave me. Your birthday reminded me that every moment of your life was a celebration of love; and that your journey did not end when you became an angel. In fact, you are so full of God’s love that I cannot wait for the next time you come and let us know you are near…

 

>> Like the time when Mommy and Daddy could smell your baby lotion in Mommy’s office where you had never been;

 

>> Like the time Mommy and I were having dinner and one of your songs started playing in the restaurant;

 

>> Like the time your Great Aunt Marcia woke from a sweet dream about you and felt your fingers skip across her forehead;

 

>> Like when we come to visit you at your grave and the model airplanes are flying nearby…seeing you in your aviator hat isn’t so painful now… we can smile and see you there, too;

 

>> And like today, when Mommy, Daddy and I all came at the same time, without planning it, to visit you at your grave and to sing you Happy Birthday.

 

Tonight at dinner, Mommy, Daddy and I made a pledge to always celebrate your birthday together. You will be there, too – always.

 

And so, my sweet baby girl, thank you from the bottom of my heart, from every fiber of my being. In the three months and four days we were blessed to hold you and love you, you gave us a lifetime of memories and a certainty that God’s goodness and mercy shall follow us all the days of our lives… because of you.

 

Your first year was just the beginning; I know as sure as I have ever known anything, that our journey together will be the greatest joy of my life.

 

Rest now, sweet angel Skyler Sue, until next time…

 

All my love,

Grandma

When your child is born, naturally you look forward to years and years of birthday celebrations.  When Skyler was born and we eventually learned of her diagnosis, we were hopeful that we’d be able to spend a handful of birthdays with her.  At the very least, maybe we’d get 1-2 years worth of birthday celebrations with her.

Today is especially hard for us as a family.  To be without Our Little Angel and just left wondering, is not easy.  We will always celebrate her birthday for as long we live and remember the joy she brought us in such a short time.  We will watch her videos, look at her pictures, spend time in her bedroom, visit her grave and find every way we can possibly think of to celebrate her amazing life.

Here’s another tribute video for our little angel. Mom worked on compiling all her happy videos into one. It’s amazing how this brought  back so many happy  memories with our precious Skyler Sue. Happy Birthday Sweet Pea.

Skyler is now three months old! With all the things we went through since Skyler was born, it’s hard to believe it was only three months. But at the same time, it seems like Skyler is growing fast right before our very eyes.  Her feed is now at 23 ml/hr and three days ago she weighed at 8 lbs and 2 oz.

On Skyler’s 3rd month birthday, Mom decided it’s time for her to meet her two  sisters – Maya and Lily. For extra precaution, Skyler is secured in her travel system – this way the dogs can’t get too close to accidentally hurt her (our dogs can get excited, sometimes they jump on things to express their joy). It’s funny how both dogs reacted and how they are very different. Maya was very interested and sniffed Skyler like crazy, she got too close to almost kissing her. Lily however  is such a funny dog, regardless how many times she is  pointed to Skyler, she seem more interested in the stroller than her baby sister.

After meeting her sisters, Skyler is wheeled out to our front porch. Since Skyler is attached to her feeding pump and apnea monitor 24/7, she rarely leaves her room (unless she is going out for a doctors visit). Seeing her sleeping and relaxed by our flower bed was very rewarding to see (not counting how cute she looks in her new aviator hat). Hopefully when she have a stronger immune system and doing bolus feeds, she can be out more often to get some sunshine and fresh air.

Featured Video: This video is taken a couple of days before Skyler’s 3rd month birthday. Skyler still doesn’t cry or make much noise, but she does this amusing grunting sound. We’re still unsure what this grunts usually mean, but any noise from Skyler is very encouraging (we’re hopeful she will eventually develop the ability to articulate some sounds).

Skyler celebrated her 2nd month birthday on April 9th, the day after Easter. Mom entered her name in a raffle drawing at a local restaurant and it appears that Skyler is a good luck charm. The next day, Mom got a call from the restaurant and said that Skyler won the main prize — which is a giant 4 foot bunny. Honey Bunny was her Easter/Birthday present and the new resident in her little kingdom.

Saturday was the first time Skyler was able to meet her Great Grandpa and we know it was a thrill for both of them. Great Grandma also does a nice job of keeping us well stocked with diapers on a weekly basis, so we’ll always be grateful for that. Skyler also received a package of clothes (which we’ve put to good use already) from her Great Uncle Bill in Illinois…the same Uncle Bill that we think she resembles in some of her post-surgery photos.

Lastly, the Home Health nurse stops by the house a couple times each week to weigh Skyler and last week she was 6 lbs & 7 oz, but this week she weighed in at 6 lbs & 11 oz. So she’s creeping up towards the 7 lb mark which is very encouraging to us since we’ve always known that weight gain could be a bit of a struggle for her. Even if it’s just a little bit at a time, it is still progress.

Featured Video:

This was taken Easter morning (before Mom got a call that Skyler won a giant bunny). Skyler’s mom was trying to stimulate Skyler by playing with her colorful beanie babies – Patrick Star and Eggbert. The entire video was 12 minutes long, but we edited it to show the priceless moment when  Skyler smiled again!