“God never gives us more than we can handle”….Bullshit….
This is the most hated saying among special needs parents, at least those of us who are faith oriented. I myself have been a born and raised catholic all of my life. Through my experiences I can tell you, me and the big man in the sky don’t always see eye to eye. But that’s OK I know that and so does he.
Growing up in the Catholic faith may seem a bit daunting to those on the outside of the congregation. The church is steeped in a lot of antiquated ritual and ceremony that seems at times silly, at worst pious and exclusionary. But I’ve always considered it home. In my early years we attended church weekly at our local parish, and I was enrolled in the primary school there. It was just “what we did.” When I ultimately left private school (due to expense) I was still enrolled in CCD which is basically Bible study and faith formation for children that don’t receive sacramental preparation and engagement in their usual schools. I will say, we always did feel a bit like outsiders through this program because it was so separate from the others in our congregation. But as a kid I remember going to the classes on either Wednesday’s nights or Sundays after mass.
I would say as a child and going into my early teenage years my faith took a bit of a back seat. It was always there, we still went to church, but I had long outgrown CCD, and going to public school I wasn’t as engaged. I think a turning point in my own spirituality came with my involvement in the Boy Scouts. It is in our Oath, and our law. In my scouting program there is a religious award called Ad Altare Dei (to the altar of God). It was a course and practice in the catholic faith through scouting. It was rigorous. Our sponsor Mr. Frank who was a guitarist in our evening choir, and Fr. Macdonald (Fr. Mac) who was an associate pastor at our church were the ones who we worked with. It was a very deep dive into the catechism of the church. A better understanding than I ever experienced as a kid in our CCD and primary school religious studies.
At the time of confirmation I had completed the scouting course work, but wasn’t enrolled in any “confirmation preparation classes” that the parish had offered. It was just something that wasn’t on my radar (nor my parents) I was in public school, so I didn’t have the exposure to that side of any program. So when it came time for my own confirmation the parish initially denied me. I remember having a sit down meeting with the pastor, and brought out the catechism training I had learned, and my simple desire to be confirmed. I think I caught the hardliner pastor a bit by surprise. However, because I didn’t participate in the school/parish sponsored activities he had said there was nothing he could do and I had to use their program. So I rebutted that I had received both the necessary sacraments (Baptism and Eucharist) been of age to make that commitment (12-18) and had done adequate catechism training which I was demonstrating currently that my knowledge was passing muster. He recanted a bit, and agreed to do it if I did a couple weeks of Bible study and got the go ahead from that sponsor.
So then began my “complete” life as an adult catholic. It is my belief…though I question it often, and I’ll say healthily. One dear friend and priest said if you are blindly following the guidance of God and haven’t questioned it, or haven’t disagreed, then maybe you are not reading or practicing it carefully enough. It is hard work, sometimes it’s impossible to comprehend. Hard to describe. I think fundamentally for me it boiled down to one truth. The Church isn’t just a physical building and “Mass” the church is the people.
As a special needs parent we walk a very difficult life. Our faith is constantly challenged. I remember praying for Hannah every day of Shelly’s pregnancy. I held a rosary her grandmother had made, I prayed as hard as I ever have in those first days in the hospital. I remember on one especially bad night. When I was in the dark room, alone with the beeping of machines, and my daughter finally resting after hours of seizures. With tears in my eyes I just looked up at the ceiling and asked “ God, where are you?” I felt alone. I felt no answer ( at least that I recognized) the next day we got more bad news. The doctors were basically telling us there wasn’t much hope for Hannah. Again staring at that same ceiling I said “the gloves are Off, God. How could you do this to us. To Hannah, to Shelly, to me.” I was mad at God. It was his fault for putting this burden on us, his fault alone. He gave us more than we could handle. That phrase is such bullshit.
We had a priest in to say Hannah’s last rights. We were so convinced she was going to pass at any moments that we took every precaution. And believing what we did we wanted her emergency baptized. She received 2 sacraments that day. Baptism, and anointing of the sick. As we were going through that ceremony, I didn’t immediately feel any presence of God. This was probably the lowest point in my faith…ever. How could God be with us?
I didn’t pray for a while after that. I had lost that hope. I had given up on that part of myself. What did it do for me? What had I committed my life to, just to be disappointed? I know Shelly was in that place too. I feel like our whole family was. They were dark and lonely days.
Months passed. I think my first reconnect with my faith came with our resolve to fight for Hannah. She had already defied the odds. She was still with us, even after we she wasn’t supposed to be. By all accounts she couldn’t live passed 3-6 moths as the average. But those months came and went. Things started to look up. In our circles people called her a miracle. I’m not a very negative person by any means (I’m Mr. positivity remember?) but I wasn’t totally bought into that label for her. But the fact remains that she was not just alive, she started to stabilize a bit. Our routine started to normalize. We got more comfortable.
At the urging of our parents we started bringing Hannah back to Mass at Our Lady of Lourdes. Maybe this was fitting because Our lady of Lourdes is a testament to a chapel and grotto from Lourdes France where the virgin Mary appeared the now Saint Bernadette, telling her to build a chapel there. The waters of the grotto are long sought after as many miracles of healing have happened with those who come into contact with the blessed water. Maybe a little miracle was in play here. The Pastor (and now our dear friend) Fr. K is simply an amazing and compassionate person. From day 1 Hannah held a special place in his heart and as we understand his prayers, his prayer room, pretty much in his every thought. Simply amazing. She is his “Hannah Rose” The way he addresses her is like he is in the presence of God himself. Caring, understanding, awestruck in a wonder that is Hannah. He is incredibly supportive of both Shelly and I. He knows the hardships that we face, he shares in our frustration and our setbacks. And he is never shy to tell us what great parents we are, and how we, through our care of Hannah, are living what Christ asked of us. I think as a special needs parent many in our shoes would just say we are doing our jobs. We are doing what anyone else would do. But through my experiences, I can tell you that’s not always the case, and that encouragement is needed constantly to keep us on an even keel.
So little by little, my faith and hope are being restored. I don’t think that’s ever something that you stop working on. I don’t believe there is an end game in that. It requires a lot of work in the mindset you carry every day. As special needs parents we struggle each and every day, and we question our faith constantly. But it’s always a work in progress.
Our community at OLL surrounded us. Fr. K wasn’t just our pastor. He was our friend, our confidant, and our spiritual rock. We love Fr. K, in a very real and powerful way, and Fr. K loves us as always from day one. We became a fixture in our church community. Every Sunday at 6pm. Back row with her wheelchair. Hannah was the silent star of the show (sorry Fr.K) as we were always reminded even though it wasn’t direct, every single parishioner in that church was rooting for us, they came to see Hannah, maybe some were intimidated or nervous about her care, but always gave us kind eyes and smiles, even if they didn’t approach.
One Thanksgiving Fr. K asked me to speak at mass about “Being Thankful.” And what that meant for us. I think for a lot of people who shared our normal mass, it gave a bit of insight into our life. Made them feel connected to us. For us, we felt and outpouring of love and support. I think Fr. K may have felt it would do us some good to come out from the back of the church a bit, and really get us comfortable being “out there.” I thank him for that. It hard sometimes to relate, and we aren’t always brave in putting ourselves in a spotlight. We don’t like to draw attention. But as unintentional as it is…Hannah does. And I think through a now mutual understanding people saw us not just as that family in the back, but as more normal people living a somewhat extraordinary journey right in their midst.
I once read a book, and it posed the question “If God is omnipotent, why does he allow suffering and illness?” and the priests answer was: that through that suffering, people are moved to acts of compassion. If we lived in a perfect world, what need would we have for faith? Through those acts we experience God. I can truly say I believe this. Maybe it’s the way I reconciled with God for my perceived abandonment. Maybe it’s what helped me realize that even as I couldn’t see him he was right there, not caring if I saw him or not. Never leaving, but giving me the resolve to keep putting one foot in front of the other. Maybe my own conviction and Shelly’s as well, was that it was up to us to do this, but all along it was God motivating silently giving that to us, bearing that with us.
Our community continued to build. Our church, our people were very present. My faith growing. I took it to another level when I told Fr. K I wanted to go on our parish mission to the Dominican Republic. My Father in Law and my truest friend Jon have always worked really well together on our home projects, and we figured our skills could translate and be useful. So I did what any good son in law does and signed us both up. Ultimately no plan goes without a hitch. Jon had to travel for work right in the middle of the planned dates. And my financial ability was of concern as the trip wasn’t cheap. But God works in mysterious ways, and everything fell into place. Even though Jon couldn’t go, I still could, and I felt a pull to do this trip. It was a bit nerve racking for Shelly as I would be in a different country and not very accessible for her in an emergency. Turns out that Hannah actually had a great week while I was gone…completely uneventful. God works in mysterious ways. During this trip, I could feel my faith and understanding of the world grow. I walk a difficult life as a special needs parent, but others live a hard life in other ways. We take for granted the good, or maybe don’t see it because we occupy our lives with activities and “stuff.” I was taught a lesson in humility, in seeing God through a different lens. When all the excess of life is stripped away at the root of it all is our faith. That’s the one thing that can’t be taken. We can give it up…but that’s on us. I grew closer to my fellow parishioners making some amazing friends. I shared my story, so many tears, and I think for all of us a communion of faith. Those are experiences I couldn’t be more grateful for.
With this recent hospitalization I found my faith under another test. We nearly lost Hannah several times. If we had been hours late in seeking out help she would have died. But something told us to go. I had to get a flat tire changed on the van before we could go, but like Mary and Joseph looking for a place to sleep in Bethlehem no room was available. I went down the street and after explaining my situation a person in front of me in line, and that salesperson moved mountains to get it fixed and get me out of there. Some faith in humanity restored. Once at the hospital they tried and failed different treatments to get Hannah breathing. Nothing worked. Shelly in tears…i’m holding Shelly as they intubated my little girl. We were scared, but in that moment of darkness, I didn’t feel alone like that first time many years earlier. I was comforting Shelly, and I felt God comforting me. Giving me that strength to be the rock Shelly needed. To maintain my positivity for both of us. The doctors stabilized Hannah. Far from out of the woods…but baby steps. Trial and error, close call after close call. It felt different though. Fr. K came up to see us a couple times, saying prayers over Hannah, and providing comfort to us. To Fr. K thank you…we needed every bit of that.
So out of this hospital stay we came home with a lot of added complexity. A ventilator, oxygen (again) suctioning, and now 24/7 monitoring due to the equipment. Our house turned into a mini PICU. Through this trial, we were met with an overwhelming amount of support. Hannah has touched so many lives as the miracle that we share with others. That we have felt that outpouring of love from our community. Some amazing things are happening, the right people, and the right places have come together. My faith in humanity is rekindled a bit. God has brought together some pretty amazing people, that continue to bless us. But as Fr. K would be quick to point out. It is in fact us who is blessing them with the miracle that is Hannah. By our sharing her with the world, she inspires others to live God’s word. We as parents inspire others to walk the life, the have faith, hope, and endless unconditional love.
I don’t believe in coincidence. Things happen for a reason. There is a reason Hannah is still here. We might not understand it fully. But we just have faith in whatever life brings our way. We owe it to Hannah, and through Hannah we are learning.
So when someone says “ God never gives us more than we can handle” I say “ He sure as heck does!” but that is the start of a journey which forges your faith, makes you stronger, and you learn to handle that. It takes hard work, grit, and Resilience…but it is doable.so we are never prepared for what God asks of us, but we find a way to do it…we might not handle it well at first, but we learn none the less.