Friday, August 9, 2019

A Golden Birthday

Our sweet Sunshine girl is turning 9 on the 9th. And just like that another year has FLOWN by! I feel like the years keep getting shorter and shorter. What a crazy ride it has been the last 9 years. The blessing of Ella's life has reached places in my soul that I didn't even know existed. So many miracles have taken place, so many challenges and painful paths we've had to walk, but our sweet Ella is worth it all. SO SO SO worth it all. You all have been here too, reading along her journey, praying faithfully, celebrating the milestones, and grieving the setbacks. I can't ever thank you all enough for always being a place where I could bring my thoughts and fears and share the prayer requests and know that there were hundreds even thousands of people praying all over the world for our miracle girl. Those early days leading up to her birth and the months and years that followed were filled with so much fear. So many unknowns. 9 surgeries. a few ER visits. Tons of doctor appointments, medications, and tests. We had set backs and feeding hurdles, mystery symptoms and close calls. But through it all our Sunshine was so brave, always smiling, always a fighter. I tell her all the time, "Ella you have Brains, Beauty, and Bravery"! She has faced a lot and has so much still to face. We continue to hold out hope that the scientific advancements will give us more time with our girl, and until then we continue to treasure every day we have with her!

On to some of the memories we made this year with our girl.

Ella Girl, you conquered 3rd grade even though you don't really like school (besides science), it seems to come pretty easy to you because you are super smart. You got to visit the Aquarium and have a new found love of sea creatures (specifically great white sharks). You got to go sailing and whale watching. You had mommy dates and daddy dates (one on one time is your favorite). You were diagnosed with Autism Spectrum Disorder (but you already knew you had a "special brain" and you asked us to find out what it was called). You started therapy and you love it. You went to a pumpkin patch and road your first carnival rides (you were so brave and so was Mommy!). You've had 2 more good cardio check ups (we never take those for granted). You got to participate in children's choir at church and join the Sunday school kids.You made your first gingerbread house (it's harder than it looks). You got your new stuffed penguin friend and named him "T-Bone" (you REALLY love him). You visited your cousins (and Aunts, Uncles, Nana and Grandaddy) and one of your best friends in Oklahoma. Mommy and Daddy cut your hair short and you said it "suits you" (we agree). You lost your 10th tooth. Your best friend moved to Florida and came back for a surprise visit. You officially graduated out of any type of booster seat (you said you've been waiting for this moment your whole life). You met a new heart friend who shares your special brain. You have your first official "chore chart" and you are taking on so many new responsibilities. Your cousins came to visit you (and Aunts, Uncles, Nana and Grandaddy). You auditioned for a TV show. We explored Crystal cove together. You were referred to a pulmonologist for some lung testing and we think you have some form of autonomic dysfunction (like your momma). You got super sick with Strep throat that turned into scarlet fever and then before you fully recovered from that you came down with fifths disease (you were sick for 12 weeks and it was scary for a while). You watched the 4th of July parade (our town has a huge one) and you watched the fireworks over the ocean. We went on our first family camping trip and we all had so much fun. You were able to reach a new level of elevation (7,112 ft) and you held your oxygen above 85 as long as you were at rest. You also got to visit Coronado island in San Diego. You are sick again with a cold right now and it's so sad to see you sick on your birthday, but girl we are still going to celebrate YOU! You have been sick more the last few years than all your other years combined but we know it's because you are out having fun and living your life! It's hard on us all when you get sick because it is a reminder to our hearts just how fragile your life is and it takes your little body longer to fight than most but you are always a trooper. We are constantly amazed at how sweet you are when you are in pain. So brave. This time of year, around your birthday, is always filled with reflection. There are thankful sighs, painful tears, and desperate prayers. There are memories and parts of our story that fill my mind that I don't think about as much during the other parts of the year. This time of year is a beautiful reminder of what a miracle your life is. We are completely in awe that we get to be your parents and are so thankful for our unbelievable and un-promised 9 years together. It hasn't been easy baby girl, but God has and will continue to be our strength when we feel scared or weak. He has held you since before you were born and He is holding you still. He and He alone is the keeper of your days, I pray we fill your time on earth with huge amounts of love and memories you can hold close to your heart!

                               Happy 9th Birthday Sunshine We Love You SOOO Much!


Thursday, August 9, 2018


Wow! Our sweet sunshine is 8 years old! What a wonderful life to celebrate! For so long I struggled to see Ella's future. I was so focused on the present and so afraid of the future. But what I've been learning these last several months is that I can fully appreciate and cherish the present and still hope for the future. I guess I thought somehow that if I didn't plan on getting to keep her forever than it would somehow hurt less when we lost her. This is false. Planning or expecting something bad to happen doesn't lessen the blow, it only puts a bigger shadow over the present. So yes, Ella's terminally ill, yes, that is terrifying and I think about it all the time, but I'm not so focused on it that I'm preparing for it anymore. I'm done preparing my heart for the pains of the future. Instead I'm going to live this life along side of her as fully as I possibly can. I'm not going to feel guilty for having fun and living as if we will have a long, full life together. I want to always carry the amazing lessons this journey has taught us, things like, not taking the little things for granted, things like, knowing what's really important in life, things like living now and not waiting to live until later, things like, empathy for the hurting, things like, deep trust and faith in God that only deep difficulty can bring. But I also want to dump the baggage that this journey brings, things like, living in fear, things like, feeling sorry for myself and for my daughter that our lives are different, things like, thinking that my life should be put on hold, things like, trying to be perfect to save her... There is so much beauty and so much pain that walk parallel in the journey of parenting a child with severe health complications. Jon and I are just SO honored we have had the privilege of already having 8 years with our beautiful sweet sunshine girl! My goal this year is to love her and love God so fully that no mater what the future holds I can look back on this time filled with happy moments of LIFE with our sweet miracle girl!
Happy 8th Birthday to our Ella Dawn, your creativity and deep thinking are such special touches from the Father. You spread joy and laughter to everyone you meet, you are strong and brave and full of imagination! You are empathetic and understanding when others are in pain, you are outgoing and talkative! You dream big and want to be so many wonderful things! You love toys and mysteries! You like science experiments and you are becoming a book writing expert! Your drawing skills are amazing to me, and your eye for detail is impressive! You love your special heart, and you seek to know, love, and understand Jesus better everyday! Your communications skills will serve you well in your life! You ask lots of questions and you love silly stories! You love lemonade and individual, undivided, attention, you have conquered many fears these last several months and mommy and daddy are so proud of you! We love you with all of our hearts and hope this year is your best year yet!