I’ve been planning this post for a while now, but just found the time to sit down and unload a bit. Since the last time we posted, our lives have changed quite a bit. We found out in early April that our son has Angelman’s Syndrome, a neuro-genetic disorder that involves developmental and speech delays, an unusually happy demeanor, and other possible issues. It’s taken quite some time to wrap my head around this diagnosis and what it means for our sweet boy and our family, along with acknowledging that our dreams and plans for the future will most likely be significantly altered. It’s been overwhelming and difficult at times for us, to say the least. On top this diagnosis, Eli had the flu in early April, causing great dehydration that required hospitalization and ultimately a surgery placing a G-tube, which ensures that Eli gets the nutrition he needs in order to grow. It’s been a busy, chaotic and stressful time.
We’ve had many friends inquire about what’s next for us or what they can do to help. Here’s a list (I like lists!) of our current status.
- We’re following God and believe in His plan for our lives. We completely believe that God’s hand is on us, and we’ve been praying and will continue to pray and trust God, after all He trusted us with Eli. As scary as things have been lately, I’ve found myself praying more and more. I remind myself that worrying is the opposite of faith. Worrying means that I’m failing to believe that God is bigger than the problems I face, when I believe the exact opposite.
- Eli is our son and we love him unconditionally. His diagnosis changes nothing.
- We’re leaning on our family and friends. We have amazing people in our lives who have been a part of this journey. We need to continue with life as normally as possible and our family and friends allow us to do that. We will not be hiding from our lives and the things God has planned.
- We are not Eli’s diagnosis. Eli is not his diagnosis. We will not limit our son or believe he is incapable of great things. We ask you to do the same. We plan to challenge Eli as any other parents would with their children.
- We are blessed. While we’ve had some struggles so far this year, we find great joy in our son. He is amazing and will continue to be amazing.
What can you do to help?
- Pray. Pray for Eli’s health. Pray for Eli to be seizure-free (seizures are a common characteristic for Angelman’s). Pray for strength for J and me. Pray for the doctors, caretakers and for our families. Pray for peace in our hearts.
- If we’re friends already, continue to include us in your lives and the lives of your children. If we’re not friends, try not be creepy…just saying :)
- Ask us how we’re doing, but understand we might not feel like talking about it. We’d appreciate time to just be ourselves.
- Try not to research things for us. We have amazing doctors on Eli’s team. We’re trusting them. If you can’t help yourself, please only read information from http://www.angelman.org/ and http://www.mayoclinic.org . These two sites have the most correct and up-to-date information (as communicated by our doctors). Understand that Angelman’s Syndrome presents differently in each child and involves a spectrum of abilities and issues, as well.
As usual, God is good.
All of the time.