Our oldest daughter got married in November! Since our family includes someone with significant health and developmental issues, each of us had our own worries and hopes about how those matters might impact the events. Truth be told, we have had many conversations over recent years about what the weddings of our daughters might be like one day, given their sister’s situation.
This risks of catastrophe or great disappointments were high.
Thankfully, it was an extraordinary weekend that will forever be etched in our minds with joy and wonderful memories.
The fact that I have a positive story to tell is nothing short of miraculous, friends. Truly, God answered so many prayers. There were many people covering the situation with passionate, pleading prayers. One of my dear friends texted me on the morning of the wedding, “Been praying all morning that the Lord’s face would shine upon you all and be gracious to you and fill your hearts with joy!”
Happy reminder: Have praying friends and ask them to pray.
While Carly’s needs are very unique to her, some general things about our experience can be broadly applicable to other families living with disability. And since people are begging me for reports and pictures, I’ll combine some personal debrief with a reflection on things we found helpful along the way.
These are the categories our family explored in the years and days before Alex and Josh’s wedding:
- Hopes & Dreams
- Logistical Planning
- Emotional & Spiritual Preparedness
Before I reflect on these themes and something about post-event processing, indulge me to share about Larry’s desire for a hotel room and Carly’s need for some ladies-in-waiting.
In the days leading up to the wedding, I was sharing my excitement and fears with Walk Right In Ministries’ online support group. These caregiving friends well understood how special but complicated this wedding was going to be for us, particularly given Carly’s health and sleep issues in recent months. Any one of those issues had a strong likelihood of creating havoc or stress around the festivities.
My husband Larry was concerned about our sleep situation and lack of intimacy opportunities, especially during such a special time. [Yes, insert a wink. I’m trying to have some real talk here.] Larry’s and my ability to enjoy the week’s festivities would undoubtedly be limited by the very thin amounts of sleep and privacy Carly allows us to have. Several weeks ahead, Larry requested that we book a hotel room for the whole weekend and stay where many of the guests could be. He thought we’d get better sleep, appreciate extra time with family and friends, and enjoy being nostalgic about our own marriage more if we held that space.
I was initially hesitant. Okay, true confession: I was resistant. For several reasons, I had concerns about how that would work. I’m glad to have trusted him and yielded to his vision. It was the best plan! It took extra coordination to leave Carly at home and we relied heavily on God’s wonderful provision of help. This included having our dear friend Emily sleep overnight with Carly for three whole nights and a couple of other family friends giving Emily times of relief or partnership. But maximizing our opportunities to experience the fullest wedding experience and maintain some boundaries with Carly’s needs was a tremendously important decision.
Double-teaming staff with Carly for the main wedding events was also an incredibly wise decision. These two things alone were game changers in optimizing the experience for every single one of us.
Happy reminder: when mom and dad are happy, kids feel happy and secure.
Another of our great concerns had to do with Carly’s severe gastro-intestinal problems. I greatly feared she would have reflux or vomiting or bowel issues that day, with potential to ruin her sister’s wedding gown or her dad’s suit.
Taking a lesson from Jochebed (Moses’ mom), we made a plan and tried to be strategically proactive, as much as possible (Exodus 2:1-4 and Hebrews 11:23). Then we prayed for miracles and tried to trust God with our mustard seeds of faith while holding our plans and expectations loosely.
I told the Real Talk Connect group ladies, “When we finely figure out what dress Carly is going to wear, I am going to buy two identical dresses no matter what they cost. Just in case Carly makes a mess of her dress before pictures, I want to have a backup to put on her at the very last second.”
One of the ladies humorously affirmed, “The royals always travel with extra clothes and ladies-in-waiting.” We had a good laugh, and I quickly made a note to share her fun fact in this blog. Thanks Joy!
We never needed the second dress. But having it available fostered a valuable sense of calm. My thoughts leading up to that day went something like this. We’ve done all we can do. If she destroys not one, but two dresses, and pictures are tainted, we’ll be reminded that God’s purposes prevail, even in imperfections.
We showed effort to care for protecting wedding memories but released the ultimate results to God’s care. Was this easy to do? Not always. But I’m really glad we worked it through.
Happy reminder: Stay trusting and flexible. Keep a sense of humor.
Hopes & Dreams
Each person in our family had ideas about how we hoped the weekend would unfold. In the years before this, my daughters didn’t realize they had some vision for what their wedding day would be like as it related to their sister. Yet, as they started talking about it now and then, attending more weddings and getting closer to their own, ideas began to surface.
By the time it was our family’s turn for this wedding, each of us was able to articulate more about what was going to feel important. For example, we realized it could be fun to have Carly visit the spa while all the girls were having nails done. That morning, Carly sat in a pedicure chair alongside bridesmaids and proudly hung her feet (boots and all) in the foot bath (without water) and giggled through a chair massage. It was delightful for all of us!
In another conversation, Alex voiced her desires about how the pastor and others would respond if Carly got restless or disruptive during the ceremony. It was important to our whole family that Carly’s inclusion in the entire wedding experience by maximized, even if she was struggling. We wanted to have reasonable expectations of Carly and guests but give priority to what the bride and groom desired. We made a plan and communicated the hopes and expectations to key people. During the rehearsal, the pastor helped educate the wedding party about how their responses to Carly would help give positive signals to other guests about how they could respond too.
Instead of being a bridesmaid, Carly was the Dance Captain — a preciously fitting, genius idea Alex had. Our kids grew up having regular family dance parties in the living room (especially on Sunday nights or during holiday gatherings with extended family). Over the years, it was mentioned how meaningful those family wedding dances would be because of those memories. So, after the father-daughter and mother-son dances, our family was given a nostalgic moment. We danced to one of Carly’s favorite dance tunes by ourselves before the DJ invited the rest of the party to join us on the dance floor. That will be a deeply meaningful memory for our new family.
We were exceedingly strategic. We imagined just about every possible scenario — best and worst — so we could have trouble shooting and response plans for just about anything that happened.
We had detailed conversations, made lists, documented schedules, met with caregiver support staff to walk through those schedules, you name it — we did it. Honestly, it was depressing to ponder worst-case scenarios. We reminded each other that things would probably go really well, and we wouldn’t need many of our “plan Bs.” Still, there was a catharsis in sharing our worst fears and helpful peace in knowing we had some options in place.
Privately, I mentally prayer walked through the schedule, visualizing how those couple of days would unfold smoothly, covered by God’s mercy.
Ultimately, we all tried to hold our hopes loosely and trust God for the results. I kept asking God to help us have low expectations of the world and out-of-this-world expectations of God.
“Maximizing our opportunities to experience the fullest wedding experience and maintain some boundaries with Carly’s needs was a tremendously important decision.”
Emotional & Spiritual Preparedness
As mother-of-the-bride, and as someone who needs a good deal of solitude to organize my thoughts, I was intentional about preparing my own heart and mind for my role and the general experience. I tried, with great difficulty, to create as much personal space as possible to read scripture, write in my prayer journal, anticipate vulnerable spots, be attentive to what each person in my family might need from me.
Despite that effort, my weaknesses were glaring at times, and I do have regrets. I have learned some painful lessons in the past several weeks.
We were all reminded repeatedly about the need for compassion (for self and others), grace, patience, and humility.
My daughters and husband taught and re-taught me some powerful lessons during this season. Most importantly, I have been learning some things that will build stronger relationships within my family for a lifetime, not just an event.
So, while I feel like my preparedness was a failure in many ways, soft hearts and general awareness served our collective hearts well in the end. We’re making a practice (practice, not perfect) of making amends. Our joy cups are very full.
Post-Event Processing of Memories
We are gradually having debriefing conversations. It takes time to process so many details and emotions. Also, the bride and groom need space to process their experience separately from the “Carly part” of things for a while. I’m certain we will learn a lot from listening to their perspectives about how things related to Carly unfolded. For now, we want them to enjoy and treasure everything about this at their own pace and way.
What any of us remembers most about the wedding today is likely to be different from what we remember most about it in the years to come.
One thing I am remembering and appreciating is this: God equipped us to prepare well. Still, God’s miracles prevailed beyond anything we could have documented in our countless plans and strategies.
What is most etched on my heart is that God was faithful in every detail of what really mattered.
Trust in the Lord with all your heart;
do not depend on your own understanding.
Seek his will in all you do,
and he will show you which path to take.
Lisa Jamieson is a caregiver advocate and author of popular books and Bible studies includingFinding Glory in the Thorns andJesus, Let’s Talk. Along with her husband Larry, Lisa co-founded Walk Right In Ministries in 2008, a non-profit interdenominational organization building faith and community with special needs families. Lisa serves caregiving families as an ordained pastoral counselor and certified Christian temperament therapist with memberships in the Sarasota Academy of Christian Counseling and International Ministerial Fellowship. Lisa and Larry have three grown daughters. Their youngest, Carly, who has Angelman Syndrome, lives at home with them in Minnesota.