Miracles in our time.

Gracie Gledhill, after 76 days at Primary's, finally was able to go home on Wednesday to her family. This little girl is a modern-day miracle. Never has there been a HLHS that was on ECMO (which basically is a heart and lung by-pass machine) survive, after being on it for 12 days. She has defied all odds and is now happily home with her parents, two brothers, and sister. There has been many prayers and many fasts in Gracie's, behalf, and I am truly humbled at what a miracle this is. It is still not an easy road, but I know with all my heart that this miracle is truly a blessing from a loving Heavenly Father. Mike and I, and many other, prayed for a miracle. Our miracle for Ryker happened to be that he no longer had to suffer physically and that he would be free from the sins of this world. With a heart defect that is severe as Hypoplastic Left Heart Syndrome is, you never know for certain what the outcome will be. People ask me if it is hard for Mike and I to see these heart kiddos do well, and not feel that life is unfair. I am a firm believer that life is not fair anyway, and also, I never want anyone to feel the pain Mike and I, and our family, has experienced from losing our two angels. We rejoice that Gracie is home, but still there are feelings of wishing that going home with Ryker may have been our outcome too. But we are at peace that an all-knowing Heavenly Father does a plan.

Pictures of Ryker and Lilly

I hail from the east coast. Since moving to Utah 6 years ago, I have found that more and more, I am finding that things are done differently here. When we knew Lilly was going to pass away, my Mom's neighbor across the street, Kim, asked if she could take some family pictures of us once Lilly came. The pictures potentially may have been after Lilly passed but ended up living and so we were able to get pictures of us all together. She also asked if we wanted any pictures of the funeral. Where I grew up, I was in no way accustomed to taking pictures at funerals. But to Mike and his family, this is and was important. So we had Kim take pictures of Lilly's funeral. And then when Ryker passed away, she took some again of his funeral. These pictures are what we call the "hard" pictures, and we do not have physical copies of them. Well today, I was over my parent's old house and Kim came over and gave me the CD's of the pictures of Lilly's sweet pictures of her and us, the pictures of Lilly's funeral, and the pictures of Ryker's funeral. They are sweet to us, but very hard. I only have shared them with very few people, and I do not think I would ever share them openly on here even. I did want to share a few, and I promise that none are pictures that will shock you. They are just some of the sweet pictures that we hold dear to us. The two of Lilly are when we had family pictures taken. The one of Ryker was the last time we held Ryker on this earth.

Bows and more

One of the greatest blessings from Ryker being born with his heart defect and sadly passing away, is the blessing of meeting so many amazing parents and amazing angels and heart kiddos. Mike and I, and our Moms too, have discussed possible projects to honor Ryker and Lilly. As many of you know, I am an avid bow maker, and so I knew that would be perfect to honor Lilly. For Ryker, I thought I would make blankets because Primary Children's goes through a LOT of blankets and I always loved it when a new batch would come in (thank-you Jen G. and all that have helped with that effort and making such cute blankets in honor of Luke, because it was so nice to have a nice clean blanket to snuggle Ryker in & on)! So I was reading one of the angels boy's blog that his parents have. His name is Ian, and he too was born with a CHD (congenital heart defect) and triumphantly earned his angel wings after a valiant fight with such. To honor his birthday, his parents donated 249 blankets, 1,070 bows, 64 coloring and kids reading books, 21 boxes of markers, 3 boxes of cleaning supplies and 172 loads worth of laundry detergent to the Ronald McDonald house and to the PICU @ Primary's. I was deeply touched and humbled by the heart-felt donation in Ian's behalf. It is not the numbers that just impress me, it is the selfless task it took to get all this gathered and completed. It has given me the inspiration to get started on the task of honoring Lilly and Ryker. My ideas (on top of the blankets and bows) would to do some nice hygiene kits for parents that unexpectedly have to be up at Primary's. Primary's does supply some personal items, but it really is just not the same as having your own. Plus, I am a chubby girl and trying to squeeze into the sweat pants (that are unisex) and the t-shirt that too is unisex was really not a very comfortable or a very pretty picture! I would want to gather various sizes of t-shirts (men's and women's) and pajamas/sweat pants also, probably some women's hygiene products. I would gather some somewhat decent toothbrushes and toothpaste, travel size shampoo and conditioner, soap, deodorant, slippers, and most importantly, some flip-flops for the shared showers that Primary has (can I just say yuck!)! I am also thinking of finding a way to buy some gas cards and then meal cards to eat at the cafeteria up at Primary's. We spent over $400 dollars on gas from the 2nd to 7th week that Ryker was alive. And I do not even want to begin to count how much we spent on cafeteria food or fast food. I can not help to shudder what it would cost now for gas, driving up and back each day. I think I would have had to move closer to Primary's. Anyways, those are some of my ideas. I think it will be quite the undertaking, but will be a great way to honor my angels that taught me so much patience and the love of our fellow brothers and sisters. So, if you have any connections or pull, or would like to in someway help out with this endeavor, e-mail me @ emilygourley@gmail.com!

Primary Children's Memorial

The first is the picture of the headstone that they finally put in for Lilly and Ryker. It looks quite a bit different then what we thought it would look like, they just have a lot of concrete around it. But we are probably going to have them unset it and take out the hole to put a plant in and have them trim down the concrete. The actual stone part we really love though. The next picture was taken today at the PCMC memorial for all the children that have passed away at Primarys. There were a little over 180 children honored today. It was a beautiful tribute, however very emotional for all. Our parents came, as did Mike's sister Kat and her husband Jon, and my sister Heather and her husband Cody. We saw a couple of other families that have become kindred spirits, sadly from losing children that were born with different heart defects. The picture is of the wall that has ribbons tied to it, with different thoughts from various family members. The two blue ones are Mike's and mine for Ryker. It sure made me miss him today. He was so much of our life, and it still is hard to go from being super busy and making our way to see Ryker every day, to not seeing anymore. And being at Primary's today really made me long for him, to just go up to the PICU and see him once more, to stroke his hair, and just talk to him. Our arms at times are empty, and it seems like they will never be full. I know that they someday will, but it is hard in the moment. Anyway, it was overall a good day.

Isaac

One of our heart buddies is having surgery today. Isaac is having what his family deems a "Glenwood" which in lamens terms, for non HLHS peoples, is the first and second heart surgeries combined. His family is in need of some extra prayers, because this is the first time that Primary's is doing this surgery. It is amazing to be part of medical history in the making, but it is also why it makes those who go first nervous and not have any expectations of what will or could happen. (Heart kids are notorious for having their own time-line and agenda!) So Brimleys, know you are in our thoughts and prayers today! This picture of him is his mom Jessica finding his first tooth! Mike and I had a chance to meet Isaac and his wonderful Mom. Meeting him brought back memories of Ryker to both Mike and I. He is such a cutie! Good luck today Isaac!
Heart hugs,
Emily

Thoughts on Mothers Day

So this is mike, I don't think I ever post on here I usually leave that up to Emily. I felt such a strong desire to share some of what happened today and our feelings. We both knew this would be a hard day more so for emily, but I was the one who came out of the bathroom bawling this morning. I was just so overwhelmed with memories of having Lilly at home, and the day she finally passed away. So Em and I just kind of held each other and cried. She is such an amazing person, she is so strong! We went with our youth today to the developmental center to help, for those who have not done this before it is amazing! These people have such strong spirits! Sacrament meeting was so nice! After we got to talk to my brother in Brazil, and had a nice dinner with my family. Over all I feel like we were really blessed and watched over today to not have a very difficult time. Emily keeps saying how she has felt such an incredible presence around lately, and know if it wernt for each other we would have not made it through today, so for those who are struggling with the loss of a loved one on this day: HAPPY MOTHERS DAY!!

Whoo Hoo!!!

Just wanted to post two exciting things! Mike passed his Chemistry class! He has put his heart and soul, sweat and blood, his everything into this class, and he passed! Yeah! I kept telling him he was smart and he could do it, and he did! The other piece of good news, is that one of my best friends who I am also blessed to also call my sister, is going to be having a baby! She is going to be a wonderful Mother, and her husband a wonderful father. Heather was so good with Lilly and Ryker, and has been my strength through some pretty hard times! Our family has been through some rough times, and this is such a blessing. She is due the 4th of January. Some great times are headed our way!