I hope you are well. Cooler weather is just around the corner; can you smell Autumn on the air yet? You'll be hearing from Dom in this update so I just want to say briefly: we love you. We pray for you continually. We're so thankful for your love, prayers, texts/emails/calls of encouragement, and generous support. The Lord is good.
As many of you may remember, last year as we were praying for God’s wisdom in our decision to move to Massachusetts, I began looking for doctors and specialists in the area and found that there was a medical genetics clinic in Boston dedicated to Gus’ genetic deletion, 22q11.2 Deletion Syndrome. We took this discovery as affirmation that God had already provided for Gus the care that he would need as we stepped out in faith to move to a new state and plant a church. It was a tremendous blessing and weight lifted in the months that we prepared to leave.
Fast-forward to a few months ago. I finally took all the necessary steps to get Gus’ medical records sent to the clinic and was able to set up his initial appointment. It was no surprise to us that there would be a wait to get into the clinic. In our case, Gus’ first appointment was scheduled for December 6th. And so, knowing that they had all his medical info and the appointment on the books, we began moving forward with trying to find him some specialists in our general vicinity so that his care would not lapse or have something important fall through the cracks while we waited.
One Friday afternoon, a few weeks ago, as the boys were having their after school snack and I was getting ready to prepare dinner, I missed a phone call from the 22q Clinic. As the voicemail message played I was delighted to hear that there had been a cancellation in Dr. Goldenberg’s schedule for the following Tuesday and if we wanted the appointment we could have it. What we thought would be a nearly five month wait was now shortened to a few days!
Briefly, I want to tell you a little bit about Dr. Paula Goldenberg. She is the mother of a 25 year old son who is also a 22q kid. At 41 years old she went to medical school to become the kind of doctor who could treat children and adults just like her son. The clinic in Boston is the third 22q clinic that she has established in her career (the other two are in North Carolina and Cincinnati, respectively). I have been so eager to meet her and our meeting that Tuesday did not disappoint.
Let me state for the record, I do not like driving into or out of Boston. In taking visitors to the airport or meeting friends in the city, I’ve never once made it out of Boston the same way twice! Big city driving has created a new level of anxiety in me that I did not previously have. For me, it makes Dallas traffic look like a neighborhood school zone. A few months ago, after accidentally taking a “detour” that added 1 hour to my drive, I made the bold declaration to Luke, “I’m never driving to Boston again! You will have to drive me whenever I have to go!” Ha! Because the appointment opened up last minute, we didn’t have time to arrange childcare for Ru and Virg in a way that made sense. And so...off to Boston we go.
A quick sidenote: I was nervous about this appointment for a few reasons. One, you never know what to expect when you meet new doctors. I had all the confidence in the world that this clinic would provide adequate care for Gus. But, sometimes the rapport with a doctor is more important than anything else. Would she listen to me? Would she be rushed? Etc. Secondly, Gus’ anxiety about doctors and appointments a slowly been on the rise since surgery last summer. We are realizing that he mostly likely has some PTSD regarding surgery and is just now able to express those fears and experiences. And so we made sure to tell him that this appointment was only a chance to meet and talk to a new doctor, because he is often fearful that going to a hospital means open heart surgery again.
We arrived at Mass General Hospital in decent time (early, actually), after one stop because Gus was feeling carsick. Gus and I navigated our way through the building and upstairs to the pediatric specialty floor. The process of finding our way and checking in was quick, easy, and organized. A blessing for those of us who do these types of things frequently. We were eventually called back and the typical routine of weight, height, and blood pressure was completed. We didn’t have to wait more than a few minutes before Dr. Goldenberg came in (you can often wait up to 40 minutes after being called back in some visits).
I won’t attempt to narrate every detail of the appointment because it was 2 hours long. Dr. Goldenberg and I went over every aspect of Gus’ 10 years of medical care, including surgeries and patterns of health, family medical history, and more. Gus, who has recently expressed that he does not like hearing us talk about him, sat with the iPad and headphones, very sneakingly navigating himself to his favorite YouTube videos. Dr. Goldenberg was wonderful with Gus. She spoke to him about his anxiety and reassured him. She involved him as she did a buccal swab of his mouth for further genetic testing. She asked him if he would like to see a doctor that might make him speak more clearly-which he was very interested in.
What I really want to say is this...God is so abundantly good to us. As I reflect on this appointment and what it means for our family and for the long term care for Gus, I am blown away at His provision and graciousness to us. As the parent of a child with chronic medical issues and special needs, I often feel lost. I feel guilty, like I’ve not done enough for him or I’m not a good enough advocate. It’s tempting to feel like I should have all the answers and know exactly what Gus needs because I’m his mom. But, I can’t know it all. I’m not a doctor. I’m not a geneticist or cardiologist, or endocrinologist. Gus needs these people, I need these people. And for the first time since Gus was born, I sat in a room with a person who knows. She not only knows the medical answers, or at least the direction to pursue, but she is a mother of a 22q kid, just like me. She knows the emotional side of things. She knows. And I didn’t have to make sure to mention things to her...she asked. I didn’t have to explain...she understood. I just can’t explain the relief I felt as I sat there talking to her, the heavy burden being lightened with every passing minute.
It is tempting to ask, “Why didn’t we have this 10 years ago?” Life would have been so much easier with a centralized clinic to rely on. For whatever reason, it wasn’t available to us in Texas. But, God knew. He knew that someday we wouldn’t be in Texas and He provided for us here what that great state couldn’t offer. And we are so thankful.
The coming months are going to be full. Full of appointments with new specialists, evaluations, bloodwork, and potentially surgery. Would you pray for us in these ways?
Gus’ anxiety regarding appointments and procedures. Pray for his ability to express those to us and for our ability to prepare him well.
Driving to and from Boston. Please pray for safety and for my anxiety to be surrendered to the Lord.
Good communication and wisdom as we meet new doctors and make plans for Gus’ future care.
Just a few items more to share with you:
We will begin holding Sunday evening services in October. We're looking forward to this very much. Please pray for us.
Work on the building (basement) continues. Please pray that we'll have the funds, labor, and wisdom to complete this task.
Sunday morning services launch on April 12, 2020!
All of our love and blessings to you in Christ the Lord,
-- Luke, Dom, Gus, Rufus, and Virgil
The Callender Family
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