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Baptism Confirmation Ink Slingers Last Rites/Anointing of the Sick Molly G Parenting Pro-Life Issues Special Needs Connection

Seeing Faith: Believing as a Special Needs Parent

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. 

Meagan asking her sister about Joseph and Jesus
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Amy M. Ink Slingers

Planning for the Unexpected

Plan for the Unexpected

“Jesus replied, ‘No one who puts a hand to the plow and looks back is fit for service in the kingdom of God.’” -Luke 9:62

           As we enter the second week of 2017, I am finding I’m having trouble getting myself into the present.  I’m stuck looking back at 2016.  It was a year of medical problems for our family.  We had four different people in the hospital, two surgeries, two broken bones (different children).  It was a year full of physical therapy for our oldest as he tried to recover, then prepare for surgery, then heal from surgery, and recover once more.  And it was also a year of great joy as we welcomed our youngest in May.
            Two of the hospitalizations were planned (the birth of our daughter).  One of the two surgeries was scheduled months ahead, and we were well-prepared to deal with the recovery process it involved (our son’s surgery).  The other surgery seemed to come out of nowhere.  My husband became sick, was admitted, and had surgery within 48 hours.  It was a whirlwind.
            The preparation for the first surgery didn’t make it less scary than the second.  One way wasn’t better than the other, in my opinion.  We called on faith and prayers in both situations.  I can’t say I felt God’s presence more in one surgery than the other.  He was there in both, in the people helping us with our other children and in the peace that only He can give in our hearts.
            Four years ago, my husband lost his mom the day after Thanksgiving.  She had been in the hospital for over a month and had been sick for many years.  When she passed away, he was at her side.  It was sad, and we miss her.  However, we felt she was at peace.
            Six weeks later, on the feast of the Epiphany, we returned home from church to a phone call from a local police department.  They had been called to do a well-check on my husband’s aunt.  She had died suddenly overnight.  His mom and aunt were twins, but his aunt seemed to be in much better health.  We didn’t expect that phone call at all, and the grieving process was much different.
            As 2016 drew to a close, we lost our two furry pets.  Our cat was 18, and we were seeing signs of decline, so we tried to prepare ourselves.  Then, Christmas night our younger dog started acting sick.  By the middle of the night, we were aware that it was serious.  We started to get dressed to take him to the emergency vet, but he died before we left the house.  We were devastated.  Less than a week later, our cat passed away.Planning for the Unexpected
            In each of these situations, there was a planned and an unexpected.  Looking back at each, preparing and planning helped, but no amount of control would make it easier.
            The more life throws at me, the more I try to control my circumstances.  I need to do x, y, and z by a certain time in order to consider the day “successful.”  Pulling in tighter, circling the wagons, so to speak, doesn’t help build trust, increase faith.  Knowing my son was going to have surgery and six extra months of physical therapy didn’t guarantee he would be ok.  He is still relearning how to run, waiting to be able to jump, only halfway through his therapy time.  My husband’s surgery happened before I could worry about it or try to control the outcome.  He needed surgery and needed it now.  It wasn’t a time for debate.  It was in God’s hands from the beginning.
            Losing our pets so close together brought back a lot of the time when we lost my husband’s mom and aunt so close together and also at the holidays.  I feel like I’m getting somewhat lost in the past, dwelling on what has happened and how it affected us.  How can we control situations better in the future?  How can we keep ourselves and those we love from being hurt?
            Dwelling on the past isn’t what Jesus wants for me, for us.  He wants us to go forward, living each day for Him and in His will for our lives, striving to be with Him one day in heaven.  That day may be years from now and expected or may come suddenly.  It’s up to us to be ready for the unknown, not by guessing what could happen but by trusting in the One who knows how everything turns out and only wants the best for us.
            At the beginning of 2016, the events and situations in which we found ourselves as the year unfolded had never crossed our radar.  As much as we planned and thought about the future, these things still caught us off-guard.  Yet God was still there in our midst.  He was still the Guiding Light.  We needed to stay in His shadow and let Him navigate us through the storms.  Once we let go of the helm and let Him take over, He will shelter us in the rain.

“‘For I know the plans I have for you,’ declares the LORD, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” -Jeremiah 29:11

Categories
Guest Posts Loss Respect Life Testimonials

My Personal Passion

It was Good Friday, April 14th 2006 and I was watching The Passion of the Christ at home and preparing for Easter with my family.  I had started cramping and just feeling tense. I tried to brush it off as a reaction to the serious subject matter of the movie. You see, I was 11 weeks pregnant with my 7th child.  We had not disclosed this to family, just a few friends. Holy Saturday, found me still feeling “off” and I decided to go to the hospital to “put my mind at ease” that everything was fine, since I had yet to be seen by my O.B.  Everything wasn’t fine.  I knew it wasn’t, just didn’t know definitively.

While at the hospital, a Catholic hospital too, I was greeted with questions like “HOW many pregnancies?!” (It wasn’t what was being asked, but HOW it was asked that was the trouble) and I tried to answer them a patiently as possible.

At first, no one believed that I was pregnant and blood work was ordered. This was frustrating, since I had taken about 5 home pregnancy tests and had been missing that monthly reminder of fertility for a while.  We did the blood work. Yup, I was pregnant.   Then I was shuttled back and forth to ultrasound and watched the tech take measurements etc., all the while she kept the chatter going to distract me.  I knew, but did not want to admit it.  As someone who has seen multiple ultrasound screens, I knew what to look for.  The tech did not have to say a word.  There wasn’t a heartbeat.  All I could see was my child fully formed, but not moving. Suspended.  Perfect. Silent.  I thought I saw some movement and I gasped.  I realize now it was my desperate desire, my mind playing tricks on me.

However, since the scan still needed to be read by the doctors we were sent back to our room to wait.  The hospital staff left us alone.  Hours went by.  I prayed silently.  My husband sat in the corner, silent.  When the door opened and a discharge nurse walked in with the paperwork asking if we were ready to go home.  I felt relief – “I guess there is nothing wrong if they are sending us home without talking to us.” How naïve I was.  This poor nurse, shocked that the doctor hadn’t come in, “The doctor hasn’t spoken to you?! Wait, I’m going to go get him.”

When the doctor walked in he had the ultrasound report in his hand and he tossed it at me from about 3 feet away.  “Here” And he started to walk out.  The nurse, upset at the doctor’s behavior, blocked the door and he couldn’t leave.  I said, “What is this?” “You can read can’t you,” he flippantly responded. “Yes, but please explain what this is.” “It says we don’t know if your kid is alive or dead.” I looked down at the paper in my hand, saw the words “suggests fetal demise” and started to shake.  Still staring at the paper I asked the doctor if he had a heart.  I don’t think that he heard me so I asked a second time, a little louder.  “What?” he asked.  I looked up, tears rolling down my face and demanded “How can you just throw a piece of paper at me and try to leave without speaking the words? Don’t you know that this is a child that has been lost? COWARD! This was a child! My child…” At this point, the nurse came forward grabbed me and held me – my husband too. I pulled my rosary out of my purse and clutched it to my chest.  The nurse, I don’t even know her name, cried with me, prayed with me.

Later on that evening I received a phone call from a person close to my family and they demanded to know what was going on.  This person had called while we were at the hospital and was told where we were.  I answered, “What do you think?” They answered, in a derisive tone, “You’re pregnant!” My heart sank as I answered back sadly, “not anymore…” There was a pause on the line.  “Why that’s awful!” was the response, where just moments before the fact that I was pregnant was the most awful news they could’ve imagined.  I had to get off the phone.  “I can’t talk to you right now.” And I hung up.  I don’t feel bad for practically hanging up on this person.  It hurt. It still does.  How can one go from such a nasty tone to one of sympathy about the same subject? Really?! Now, after years, do I realize that this person did not mean what they said in the way that it was said.  While this person did worry about what another pregnancy meant for me, this person never wished me to not be pregnant, to lose the baby.  However, at the time, the manner in which it was spoken left a lot to be desired.

No matter the number of children I already had at home, this child was just as wanted, just as important, just as unique. I never really got to mourn.  How do you talk about a child people didn’t even know existed?  Miscarriage is not discussed and if it is it is with words like “there must have been something wrong with it,” or some other nonsense.  It isn’t viewed as the loss of a child.  Rarely do you have someone say to you “I’m so sorry.” As a society we need to recognize these CHILDREN.

I feel that there is a serious attitude adjustment that needs to be made!  We need courage to talk about the humanity lost, the person to be mourned.  Just as on Good Friday, Holy Saturday – we mourn the death of Jesus.  Easter has a new, deeper meaning for me.  It was the day I buried my child.  The day I choose to celebrate the brief life that was given along with the everlasting life Jesus gave us with His Resurrection!

As I told that doctor, this is a subject that needed words, not a piece of paper thrown down at someone.  His callous attitude toward us, our child was chilling.  He just stood there. This was not some young fresh out of med school doctor either.  He was older, should’ve known better.  What were needed were words of comfort, words of healing, like the nurse that held my hand and prayed with me as I clutched my rosary.  I’ll never forget the look on his face after I was done with him.  He was truly sorry, tears were in his eyes.  I hope that was the lesson that needed to be learned.  That my child’s death was meant to help that doctor to realize that what was needed was to give voice to the humanity!

 

 

 

Categories
Guest Posts Loss Respect Life Testimonials

My Personal Passion

It was Good Friday, April 14th 2006 and I was watching The Passion of the Christ at home and preparing for Easter with my family.  I had started cramping and just feeling tense. I tried to brush it off as a reaction to the serious subject matter of the movie. You see, I was 11 weeks pregnant with my 7th child.  We had not disclosed this to family, just a few friends. Holy Saturday, found me still feeling “off” and I decided to go to the hospital to “put my mind at ease” that everything was fine, since I had yet to be seen by my O.B.  Everything wasn’t fine.  I knew it wasn’t, just didn’t know definitively.

While at the hospital, a Catholic hospital too, I was greeted with questions like “HOW many pregnancies?!” (It wasn’t what was being asked, but HOW it was asked that was the trouble) and I tried to answer them a patiently as possible.

At first, no one believed that I was pregnant and blood work was ordered. This was frustrating, since I had taken about 5 home pregnancy tests and had been missing that monthly reminder of fertility for a while.  We did the blood work. Yup, I was pregnant.   Then I was shuttled back and forth to ultrasound and watched the tech take measurements etc., all the while she kept the chatter going to distract me.  I knew, but did not want to admit it.  As someone who has seen multiple ultrasound screens, I knew what to look for.  The tech did not have to say a word.  There wasn’t a heartbeat.  All I could see was my child fully formed, but not moving. Suspended.  Perfect. Silent.  I thought I saw some movement and I gasped.  I realize now it was my desperate desire, my mind playing tricks on me.

However, since the scan still needed to be read by the doctors we were sent back to our room to wait.  The hospital staff left us alone.  Hours went by.  I prayed silently.  My husband sat in the corner, silent.  When the door opened and a discharge nurse walked in with the paperwork asking if we were ready to go home.  I felt relief – “I guess there is nothing wrong if they are sending us home without talking to us.” How naïve I was.  This poor nurse, shocked that the doctor hadn’t come in, “The doctor hasn’t spoken to you?! Wait, I’m going to go get him.”

When the doctor walked in he had the ultrasound report in his hand and he tossed it at me from about 3 feet away.  “Here” And he started to walk out.  The nurse, upset at the doctor’s behavior, blocked the door and he couldn’t leave.  I said, “What is this?” “You can read can’t you,” he flippantly responded. “Yes, but please explain what this is.” “It says we don’t know if your kid is alive or dead.” I looked down at the paper in my hand, saw the words “suggests fetal demise” and started to shake.  Still staring at the paper I asked the doctor if he had a heart.  I don’t think that he heard me so I asked a second time, a little louder.  “What?” he asked.  I looked up, tears rolling down my face and demanded “How can you just throw a piece of paper at me and try to leave without speaking the words? Don’t you know that this is a child that has been lost? COWARD! This was a child! My child…” At this point, the nurse came forward grabbed me and held me – my husband too. I pulled my rosary out of my purse and clutched it to my chest.  The nurse, I don’t even know her name, cried with me, prayed with me.

Later on that evening I received a phone call from a person close to my family and they demanded to know what was going on.  This person had called while we were at the hospital and was told where we were.  I answered, “What do you think?” They answered, in a derisive tone, “You’re pregnant!” My heart sank as I answered back sadly, “not anymore…” There was a pause on the line.  “Why that’s awful!” was the response, where just moments before the fact that I was pregnant was the most awful news they could’ve imagined.  I had to get off the phone.  “I can’t talk to you right now.” And I hung up.  I don’t feel bad for practically hanging up on this person.  It hurt. It still does.  How can one go from such a nasty tone to one of sympathy about the same subject? Really?! Now, after years, do I realize that this person did not mean what they said in the way that it was said.  While this person did worry about what another pregnancy meant for me, this person never wished me to not be pregnant, to lose the baby.  However, at the time, the manner in which it was spoken left a lot to be desired.

No matter the number of children I already had at home, this child was just as wanted, just as important, just as unique. I never really got to mourn.  How do you talk about a child people didn’t even know existed?  Miscarriage is not discussed and if it is it is with words like “there must have been something wrong with it,” or some other nonsense.  It isn’t viewed as the loss of a child.  Rarely do you have someone say to you “I’m so sorry.” As a society we need to recognize these CHILDREN.

I feel that there is a serious attitude adjustment that needs to be made!  We need courage to talk about the humanity lost, the person to be mourned.  Just as on Good Friday, Holy Saturday – we mourn the death of Jesus.  Easter has a new, deeper meaning for me.  It was the day I buried my child.  The day I choose to celebrate the brief life that was given along with the everlasting life Jesus gave us with His Resurrection!

As I told that doctor, this is a subject that needed words, not a piece of paper thrown down at someone.  His callous attitude toward us, our child was chilling.  He just stood there. This was not some young fresh out of med school doctor either.  He was older, should’ve known better.  What were needed were words of comfort, words of healing, like the nurse that held my hand and prayed with me as I clutched my rosary.  I’ll never forget the look on his face after I was done with him.  He was truly sorry, tears were in his eyes.  I hope that was the lesson that needed to be learned.  That my child’s death was meant to help that doctor to realize that what was needed was to give voice to the humanity!