When I first heard we were doing a special needs series, I was very happy to contribute and had many ideas flowing. There are so many areas in our faith and faith lives that we can use a voice and guidance. However, the very day this happened was the day my daughter was discharged from the hospital after a month long stay. So today, I will share with you her story and get this series started with some very amazing things that happened.
December 27 started like any other day for our family. It was my husband’s birthday and we had a lot of family plans including cake and presents. Halfway through opening presents, Meagan came over to me, put her hands on my leg, and said, “Mommy, my head….” The next thing we knew, she was on the ground out of it – her head bulging, and her eyes glassy. Shortly after she was pressure vomiting and turning color, and I knew we had to get her to the hospital as soon as possible.
For those that don’t know our story, Meagan, my fifth of six daughters, was born with congenital hydrocephalus (fluid on the brain). She was shunted at birth, and since then has many other diagnoses that we have dealt with over her 5 1/2 years including epilepsy, chiari malformation, failure to thrive, developmental delay, and many other difficulties. She has had 19 brain surgeries and many other hospital stays and procedures, and daily life with her is nothing short of adventure. I thought we had seen it all with her, as several of her stays and surgeries had been quite serious – until this last time.
By the time we got Meagan to the hospital, she was grey and not breathing well. The respiratory team tried to help her as best as possible, but her body wasn’t responding. She then started seizing and going downhill. Her carbon dioxide was through the roof and she wasn’t able to breathe on her own. They had to intubate. Unfortunately, she was still pressure vomiting from her shunt failure, so because of what can only be described as the perfect storm, she aspirated. The neurosurgeon took her to surgery and externalized her shunt to relieve the pressure, but the spiral was already too deep. Meagan was not able to breathe on her own and was a very sick little girl. The week following in the PICU, she was fighting aspiration pneumonia and then contracted RSV on top of it all the week after. It was a snowball effect, and any medical mama knows its the secondary infections that worry us most. It sounds crazy to think I was ‘comfortable’ with brain surgery, but that is Meagan’s life. Once aspiration pneumonia and RSV piled on, I was very worried. It was probably the first time in her many surgeries and hospital stays I was concerned she wouldn’t recover.
In times like these, anyone of faith typically turns to that faith as a comfort. But there is just an intensity that is added when you are a parent to a special child. Everyday is such a struggle, that the yearning for them to get well and fight another fight is strong. You know every time they have met challenges, the walls they already fight to break down, and many other hard times they have encountered – so when they are really down, it is a beyond desperate situation. I knew this time was different – that trusted “mom gut” was very apprehensive and not feeling good about Meagan’s situation. So I turned to the only place I knew had more control than I did – my Catholic faith and God who had been with me since before Meagan was born.
Probably towards the middle of Meagan’s precarious stay, I was on pins and needles. Those who know me well could read between the lines of my updates – this was serious and she was really bad. Meagan had been rushed from birth for her first brain surgery, and was baptized and confirmed at birth. So she already had so many graces to help her along, but this time she would need any help she could get. In hindsight, I see that God was showing me signs along the way. At the time I didn’t realize what they were, but now I see He was offering me comfort and hope.
The first chance I got at Children’s, I had a priest come and give Meagan Anointing of the sick. Not too long after, I had a friend offer a St. Gerard cloth to use to pray with Megs. Our parish priest also came and gave her Anointing of the Sick just a week later. And a family member had a priest say Mass for Meagan at Medjugorje when they heard of her precarious state.
When Meagan was not recovering well, a friend of mine had asked if I had any way to get her some Lourdes water. I told her no, I didn’t. It was a great idea, but I didn’t have a way to get her any at that time. The very next day another friend contacted me asking if she could come visit. I said sure and she made her way to the hospital. We sat down and she took out a package. The first thing she took out was a very sacred relic of St. Theresa that another friend had sent her to be brought to our room for Meagan. Meagan’s middle name is Theresa. The second thing she took out saying to me, “I’m not sure if you can use this, but I thought Meagan could really use it right now and I want you to have it.” I took the bottle from her and then saw it was Lourdes water. I got goosebumps. There was zero way that my two friends knew each other and zero way that this friend knew we had discussed Lourdes water for Meagan. It was truly a God moment in a very dark time.
Not too long after, I was talking with one of my very close friends. She had mentioned St. Joseph oil that would be good for Meagan, but she wasn’t sure where it had gone. It had been her mothers, which was extra special because she prayed a lot for Meagan, but a lot had been happening and she was sure it had been misplaced. The next day she called me and said she had opened a drawer and the bottle of oil was there. She said she would place it in the mail and send it to Meagan. Around the same time, several families organized a local prayer vigil for Megs and brought together people from all aspects of our life at a local venue to pray. The night ended up being very stormy with rain and thunder and lightning all over the place – yet, they still showed up and it was an extremely moving service.
Meagan had a very tough time with the RSV. She was already struggling neurologically and was fighting the aspiration. But the RSV on top of it all was really bad. She would cough and cough and cough and she would struggle immensely. Her oxygen would drop and it would be a challenge for the nurses, doctors and respiratory therapists to bring her back to a normal saturation. Meagan was still intubated at this time, so they would suction her many times, and all we could do was sit there and hold her hand and talk her through it. She wasn’t awake, but I knew that somewhere deep down, she had to hear me.
One night, Meagan was worse than ever. The coughing fits were constant and she was really struggling. The doctors and therapists were amazing, but she was really having a bad night. I took some of the Lourdes water and rubbed it on her chest praying for relief for her. Soon, her oxygen recovered to a good saturation and she came out of the coughing fit. The therapists were able to suction the sticky and thick phlegm from her lungs for the first time and she seemed to be more comfortable. It was the first time I talked to Meagan and actually saw response from her in her face. I couldn’t believe it because we had not seen much improvement at all before this. For 3 weeks I had waited for signs of my daughter, and that night I got it.
That morning after her terrible night and the storms during the prayer vigil, we had several people text us with pictures of clouds opening with sunlight shining through, and rainbows covering the sky. It was more symbolism that she had turned the corner and was going to be okay. She had overcome several complications, two illnesses, a shunt failure, seizures, and her 19th brain surgery and was once again coming home. After over a month of uncertainty, I was finally given the signs that she was on her way to recovery. Looking back on this last stay with her, I think it was a big reminder of how much we don’t control with Meagan’s life. I think that is something that is hard for special needs parents in general, and a big reason I am thankful for my faith and the signs we were given along the way.
As a special needs parent, you are always in fight mode. Even when your child is doing well, you are preparing, gathering, and learning. You are always on alert and always looking ahead to the next challenge that lies ahead. Are Meagan’s eyes glassy because she’s tired or about to seize? Is Meagan tired because of normal growth, or because her shunt is failing? If Meagan gets sick again, is she going to be able to fight it at home, or will she be back in the hospital fighting for her life? The biggest struggle I face as Meagan’s mom is recognizing and accepting that I don’t control everything in her life. I can be her best advocate, physically and spiritually, and still, I cannot control what ultimately happens.
As a Catholic mom of a very complicated daughter, our faith has helped me better understand the lack of control we have in lives of our special kids. The faith grounds me when I feel lost, it pushes me when I feel challenged, and it comforts me when we are in times of need. For our family, it’s a great source of strength – and I am so happy that this series is started to help guide us through this journey we are on together. As special needs parents, we know that there are just aspects of our lives that no one else gets except other special needs parents – and this is also true when navigating areas of our faith. We have encountered many challenges and even road blocks along the way, and those times have sparked questions and discussions that I think is important we have as Catholic parents.
As tough as those times have been, however, I do know one thing – it has made us stronger to hold on to our faith because it is times like Meagan’s most recent stay where you are sitting in a dark hospital room, ice cold as they try to stabilize your child, the only sounds around the beeps of her machines and the bustling of the nurses and doctors trying to help her the best they can. All you can do is sit there and think, “Not after all she’s been through.. this cannot be …” But luckily for us, we have a light in the darkness – we have a string of hope in very hopeless times – our Catholic faith.
I’m very excited to go on this journey with you, and discuss ways we can make our everyday experiences even better for those of us who have been privileged enough to have a child with extra challenges. Meagan is a gift. Our faith is a gift … sometimes she sees things that I don’t see … and makes other things come together that we would have never thought possible. We now have the opportunity to share with each other how we can make our faith experience better than ever with our special kids, and from there show the world how much they can teach us and bring us closer to God.
