Dear Friends and Family,
Hello! Once again, it’s been a while since we’ve updated and that’s a fact I can’t pass over quickly because it means that life has been stable and that Amos is doing well. What a gift! While I always intend to write more often, these stretches in between updates remind me of the great blessing of being able to carry on with “business as usual” – something we longed for so much when Amos was at the peak of his battle. Now our “business as usual” includes lots of therapy, occasional doctors appointments, and the daily challenge of seeing Amos struggle to do things that come easily to most other children his age. BUT our “business as usual” also looks like time together, learning together, growing together, and enjoying the abilities and opportunities that we do have because of all that God has given us- things that we try not to take for granted. I think I am learning that no matter where God leads us there is always more room for gratitude rooted in God’s faithfulness rather than sorrow over lost things that we were never promised to begin with. In a much bigger way, God continues to show His loving kindness towards Amos and our family in these daily mercies.
One very recent and most notable kindness was the chance to celebrate Amos’s 6th birthday on May 6th! We are so amazingly thankful to get to celebrate another birthday with our biggest little man. He’s such a joy and we continue to delight in seeing him grow in strength and character. May he continue to grow in his love for God and for others! Amos’s birthday party turned into quite the event when an inquiring email to the fire station resulted in the Cambridge Fire Station’s Black Watch Officers hosting the most amazing event at the fire station- complete with “fire kits” (costumes) for all the kids, spraying the hoses, checking out the engines, and seeing “Fireman Sam” (a British cartoon character) bring in the birthday cake. What a VERY special day for Amos and a huge blessing for us to see the station go above and beyond to celebrate Amos. The whole day was full of awesome surprises and an amazing memory for all of us. Amos was over the moon! Special thanks to the Cambridge Fire Station for showing such kindness.
Another recent development is that Amos has finally begun his growth hormone replacement therapy. This is done by giving him a shot of growth hormone each day with the idea that somewhere in the 3-6 month range from now, his growth will start to trend closer to his percentiles pre-diagnosis. Growth Hormone also helps regulate other important functions so we’re happy that he’s started this and would appreciate prayer for no negative side effects. We don’t expect serious side affects any but the decision process for starting this wasn’t easy! Thankfully we got clear results that this is the right move for Amos. We also were thrilled to realize that the needle used for this daily shot is so small that you can barely feel it. Will and I got to test out on ourselves several of the different devices that Amos could choose from and we were REALLY excited to realize that you basically can’t feel it – at all. This is so huge because the only other experience we’ve had with daily injections for Amos was during chemo and involved nearly nightly meltdowns all around. So a huge praise that this experience is much, much different!
As we look ahead to the summer, we’ve got a lot coming up but most notably, Will is in the process of trying to wrap up his first draft of the dissertation that he’s been working on here at Cambridge. Did anyone forget that he’s doing that?! God has gifted him with an incredible amount of juggling skills…metaphorically speaking though he’s not too bad literally either! Please would you pray for Will as he tries to focus on his work and do a good job? We are very grateful and frankly shocked at times to still be doing this PhD thing. It’s a privilege and a lot of hard work!
Coming up, Amos will have an MRI and another eye surgery in California towards the end of July. We are hopeful that the eye surgery will really improve Amos’s use of his eyes, which is not great at the moment. Please pray for diligence as we try to help Amos with all of his therapies. We know that it’s a slow and steady journey towards progress but sometimes it just feels … slow. Please help us to trust God for Amos’s development and skills. Pray for Will and I to balance making sure Amos is challenged to work hard with making sure he knows he is loved and appreciated regardless of his abilities. We are incredibly grateful that we get to parent all three of our boys and we thank the Lord for the good gift of each of them!
Thank you for reading this far, following along, and most importantly for praying! We are so thankful for you!
“Forever, O Lord, your word is firmly fixed in the heavens. Your faithfulness endures to all generations; you have established the earth, and it stands fast.” Psalm 119:89-90
Kelli, Will, Amos, Luke, and Sam
Here are some pictures of the birthday party from earlier this month. Special Memories!