I am writing this as I sit next to Ashton, enjoying a fire and some rest after a long day on the road. Candidly, I am really struggling to be honest as I write because I do not want to undermine how happy we are about the incredible progress that Hampton has made over the last six weeks. At the same time, February may have been the hardest month of mine and Ashton’s life together.

I’ll start with the positives. Hampton’s treatment has been a clinical success! He has been spasm/seizure free since our initial visit to UNC Children’s and is generally back to being a happy, lively and engaged little baby. More importantly – we believe that our early intervention and Ashton’s intuition saved Hamp from the permanent damage that is often associated with infantile spasms.

The treatment for Hamp’s diagnosis involved 6 weeks of high dose steroids. Side effects included constant hunger, GI upset (a solid combo when your baby wants to eat all the time), general unhappiness and insomnia. The first two weeks of treatment were brutal on little Hampton. 

I think that every parent is familiar with the sadness that accompanies listening to your child cry, however, we were unfamiliar with the special despair that accompanies listening to a child cry when they are in incredible pain, knowing that there is nothing you can do to alleviate their suffering. Couple this with nights and weeks of sleeplessness and you have a solid recipe for deep, cosmic frustration.

For me, there were many nights of anger: anger with my inability to help, anger at myself for not listening to Ashton earlier in the process, and anger at the Lord for allowing my child to suffer despite months of earnest prayer from our family and thousands of friends. Would we ever get our son back or would we be tortured with the memory of a short season where Hampton was thriving?

___

A quick aside:

Even as I am writing, I am aware of the fact that there are many children with far worse outcomes than Hampton’s. I often feel guilty of hyperbole or of melodrama, knowing that many people have walked through darker days and face much more darkness ahead. Even so, it’s hard to distinguish the feeling of a drowning person a foot under water versus one that is ten feet under. The sensation is generally the same.

___

Steadily though, Hampton began to return to the state that we had known him in prior to the onset of the spasms and the subsequent treatment. His cries were eventually traded for smiles and he began to make massive developmental leaps at home and during his therapy sessions. He has been so pleasant to be around the last couple of weeks and has returned to sleeping through the night, which would have been a huge relief had our oldest son, Liam, not decided that sleeping and staying in bed were no longer going to be a part of his own agenda.

So, we are grateful, and we are tired and we have a long road ahead. Weeks have run together into what feels like a very long day. I am generally still confused at what the Lord is doing in all of this and why he has chosen our family to take this journey.

Lately, I have been struck by Jesus and a passage in Mark 14. In one of the scenes in this chapter, Jesus is alone in the Garden of Gethsemane and prays that the cup of wrath might pass from him to another. He essentially prays, “if there is any other way, if there is anyone else, lay this burden upon their shoulders and not on mine”. The great irony of this, and where I have found great comfort, is that, just moments before, Jesus had spoken of the resurrection and of a future where he would be united with his followers in the Kingdom of God. He knew what the end product of his faithfulness would be yet even Jesus, sinless and perfect, suffered in the gap between a reality of better, even perfect days to come and the immediate reality of unimaginable pain and suffering that he was being called into.

Our family still trusts and believes the promises of God for Hampton, for Liam, and for ourselves, yet we struggle and lament the reality of challenging days lived and the many challenging days that are likely to come. I like to think that we are resolved to move forward in faith, though I am the first to admit that we are often begrudging in our obedience to follow the path that the Lord has set before us. There will be many days of rejoicing to come, and there will be a day when all is restored and every tear is wiped away, yet I suspect that there are many hard days still ahead.

I could keep on but will end here for today. Thank you all for your continued love and support throughout this season. I have included some additional items for prayer, support, and celebration below.

Much love,

Will

A couple of ways that you can support our family:

• Hampton is being baptized at Hope Community Church (Olde Providence Site) at 11AM this coming Sunday, March 24th. If you are local, we would love for you to be with our family as we celebrate Hampton’s life and dedicate him to the Lord’s continued care.
• Please be praying for us as we continue to make decisions related to Hampton’s care team and as we travel to UNC Children’s and Boston Children’s in the coming months.
• Please be praying for our family as we prepare for a hectic April. Hampton will be participating in three weeks of daily, intensive therapy here in Charlotte April 8th-26th. We are so happy to be able to stay local instead of going to Chicago for this therapy, but it will still be a challenging month for our family and especially for Ashton as she bares much of the logistical burden. Many people have asked how they can be helpful during these weeks. If you would be willing to bring/send a meal, assist Ashton in routine maintenance around the house, bring Ashton a coffee during therapy sessions, or simply send a note of encouragement, we would be very grateful.
• Please be praying for us as we continue to navigate the challenges of parenting a very bright and very stubborn 3 year-old in the midst of everything else that is going on. The last 6 weeks have also been hard on Liam, as Ashton and I have had to spend many nights away from each other while Hampton was visiting Hemby and UNC Children’s hospital. Liam is sensitive to the reality that all is not well with his brother and with his parents. Pray for Ashton and I as we try to be intentional in loving him and creating joyful memories with him in the midst of a chaotic season.
• Please pray for Ashton and I as we continue to fight for our marriage and work to create space for one another. I cannot express enough how grateful I am to have Ashton as a partner. Though we have managed to stay very connected throughout the last 6 weeks, we are often in very different places emotionally and spiritually. We are excited to spend a few days together, without the boys in Charleston next week and would ask for prayers that the Lord would use this time to restore us individually and as a couple. We are generally a better wartime couple than a peacetime couple, which is useful in this season, but we are both in need of a break. Pray that we do not overschedule our time and that we can both give ourselves the space to do nothing, which we are generally not very good at.