I remember reading another mom's blog who had a baby with Trisomy 18 when I was pregnant with Annelise. She said that she was grateful for the journey, and that she wouldn't change it, because of the way it changed her relationship with God. I remember thinking that I would likely never be emotionally/mentally in that place. But I prayed that I would be someday. I'm so thankful that asking to be closer to the Lord is a prayer that God will always answer with a yes. Looking at Annelise today, if I had the opportunity to fix all her medical issues, I would for sure vote for that! But I don't look back on our intense journey and wish it didn't happen. I am so grateful for the opportunity to be in a place where I had nothing to do but run full speed at my savior and test what I knew in theory about the power in His love. He caught me, He held me, and is holding Kevin and I during this new season of no sleep and new normal of having a medically fragile child heading into flu season. We feel His love in a way that we wouldn't be able to without the struggle that pushed us to His feet.
I love celebrating the successes big or small in the nationwide trisomy community that I belong to by being part of groups and following kids' pages on facebook. Our community celebrates with each other, but today is grieving with the parents of Beckett Hope, who went to be with Jesus yesterday after some stellar 33 months of life. She caught a cold that ended up being too much for her body.
I think about all of the amazing memories that family is left with because of Beckett. There's a super sweet video of her dancing in the kitchen with her Daddy. Her mom posted a picture of her way back when she was 5 months old, same age as Annelise now... and she had a onesie that said "my favorite color is glitter". I think we would have been friends.❤
It was so sudden, and the loss of our beloved friends so young, like our Omaha sister Selah Grace, is a bitter part of this world of parenting babes born with trisomies. It hurts.
I don't know how many days Annelise has with us. I don't know why she couldn't just have been born with the typical two of each chromosomes so we could enjoy a less intense infant stage. But I know she is here today, and that this is the time that we get to cherish and treasure her, love and cuddle her. I know God is using her life, and it's so amazing and humbling to see His hand in our family daily. Each crazy making day of this new life is one that we fought hard for. The stress and business is real, but the joy and gratefulness of getting to experience this stress because we are home living in our house with Annelise, that's real too and fills my whole heart with feelings that are leaking out of my eyeballs as I write this.
When I tell Annelise how important she is, and how much worth she has... I keep getting the thought that Jesus feels the same way about me too! If she has value just because she's a person created by God...well, so am I, and so are you! That's pretty great stuff🥰
I have been able to write this long post because Kevin has been taking care of Annelise. I'll go help him out now! Goodnight!
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