Fourteen Easter seasons ago Ryan and I were processing the information that had just been handed down to us from a perinatologist in Austin, Texas informing us that our son had spina bifida. Finding out that something is wrong with your child is completely overwhelming. I’ve said before in that moment, there was really no going back to life before hearing that diagnosis. From the way I saw it, there were three different endings; all of them difficult.. If we chose to terminate, which was offered to us as a “treatment”, I’m not sure how you heal from that. If our baby ended up dying in utero or at birth, I’m not sure how you heal from that. Or, if we chose to educate ourselves on his diagnosis and then try and give him the best chance at life, I’m not sure how you heal from that. There is no handbook for this.
This [Holy] week, we are approaching Easter weekend, 14 years after receiving our original diagnosis and Hayden is currently inpatient in a pediatric ICU dealing with multiple acute diagnoses. (And this, coming off of a full week of all eight of our family members taking a turn with a brutal stomach bug.) We were already living on little to no sleep and then Hayden‘s stomach bug transitioned into respiratory issues, and pneumonia and a virus and also a UTI. He had been feeling pretty miserable for quite a few days and since we know when to fold ’em, we took him to the ER for admission into PICU late last week..
We’re writing our own handbook as each day and month and year passes by. I’m constantly being asked questions about Hayden‘s care or Hayden‘s needs. Every.single.month someone from Medicaid calls me and asks me what appointments Hayden has been to, if there have been changes in his care, if he has any new diagnoses. None of these are things that I chose nor would I pick to be doing. But, it is the reality of trying our best to give Hayden the best life possible. And I have to say, I’m pretty dang proud of the life he is living.
Not only has he taught me countless lessons about life and made me a braver, more confident caregiver and advocate, but he has put a spotlight on our family. And now that we’re in plain view to the world, we will to point the world to Jesus. I will never stop saying that I hope and pray when people look at our family and everything that we’re doing and the chaos of it all, that they only see our JOY and I want more than anything for them to know that the source of that joy is JESUS. What better time to remind the world than with Easter weekend approaching in a few days?
Fourteen years ago on Easter weekend, my world was falling apart. But around 2000 and so years ago on Passover weekend, Jesus‘ world was falling apart and yet also falling into place. It is because of Easter weekend that our family has the hope that we have. Because, you see on Easter weekend after He was murdered on mine and your behalf, Jesus was buried in a borrowed tomb, but only for three days. He was resurrected on the third day and overcame death! And in so doing, he has given my family, and your family, the chance to also overcome death. Because of the gift and good news of the gospel (i.e. Jesus died for our sins and rose again and now we have a free gift for the taking), we have hope in eternity. So, when I watch my son lay in his hospital bed feeling miserable or I see him struggle in his wheelchair because of his inability to walk, or when I see his Autism diagnosis get in the way of he and his peers interacting, I do feel grief for what is lost on this earth – but beyond that I have joy. Because I know that no matter what happens on this planet, because Hayden has accepted the free gift of salvation that Jesus offered to him, Hayden will have eternal life in heaven and will be restored one day. I know that with 1000% certainty. I just wish that everyone else would come to know that, too. Look at this child, look at our family and see that there is something bigger than yourself and this world, and that there is a source of life and hope and joy.
So coming into this Easter weekend, I am thankful. I am thankful for all the years I’ve had with Hayden, I am thankful for the platform to share Jesus. I am thankful that God can turn ashes into beauty. I am thankful that 14 Easters ago my world and I knew it was ending. Because when my world ended, my life was actually able to begin. I pray that our family will bless you and encourage you and have you seeking truth. For me, it took an earth shattering event to wake me up to how wonderful God‘s plan is. And if sharing our truth and our life with the world brings one more person into communion with God, then every single tear that I’ve cried over the span of 14 years was absolutely worth it.
The only thing that matters, is you knowing Jesus. Knowing His love for you and the sacrifice He made for you. There is no time like the present. I can tell you firsthand, life is short. Don’t put off another day coming to know the Lord. And not just so that you get to go to heaven. Yes, that’s great.I hope we get to be neighbors and hang out together for eternity. But please don’t just be after Jesus for His stuff. Be after Jesus for Jesus. He makes each day worth living and coming to know Him more and more each day has been the greatest gift of my life.
“If you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved.” Romans 10:9