Saturday, May 21, 2016

day 20 ~ rebuilding

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If you had asked me as a teenager what my life would be like in thirty years, I can guarantee you what the reality is versus what I thought it would be then, the two would be so different you would wonder if I was on the planet earth. I knew I wanted to be married. I knew I wanted to be a mother. Heck, I even knew I wanted to be a stay-at-home mother like my own mother was. My kids would have gone to Catholic school like I did and life would have been a series of PTA meetings and sports events, followed by church and family. 

I had it all figured out. Then life happened and before I knew it, I was married and a mother of two. One had a genius IQ and kept things very close to his heart and the other seized everyday and could not see, walk or talk. I spent my days changing adult diapers and blending food for my daughter G-tube, all while encouraging my son to go out and conquer the world, even when he was terrified to open the front door. 

My marriage had been through the wringer but had withstood all the crap the deceiver threw at it. Jerry and I had rebuilt our relationship from the ground up time and time again. We were both broken and deeply flawed people but with God at the center of our marriage, we both felt safe and loved. The trust runs deep and I would not know how to breathe without him. 

Jerry loved our daughter fiercely. Courtney was Daddy's princess, his favorite couch buddy and the light to his days. When he would arrive home at the end of the work day, he would put down his briefcase and go right to Courtney. There would be kisses and giggles and they both delighted in it. 

He was her first boyfriend and her last. Courtney would look toward her Daddy and when he read to her, the smile would stretch from here to Texas. The only other person she ever did this for was her big brother Jonathan. The two men who loved her most, wept the hardest when God brought her home to him. 

The night Courtney died is a very precious memory to me. It is a moment in time that is burned into my memory forever. When she took her last breath she was smiling. She knew that when she opened her eyes, Jesus, her beloved, would be standing there arms stretched out waiting to embrace her. She was ready to go home. 

When the funeral home arrived to take possession of her body, my husband gently carried her to the gurney and laid her out with such care. He was so very gentle and loving, tears pouring down his face the whole time. I was taken back in time to the day our Courtney was born. Jerry held her the same way then, so careful as if she would break. His precious daughter, the jewel of his life, was now home with God. 

We held one another that night. We wept the hard weeping that racks the body creating a deep ache within our muscles. Jonathan wept with us, all of us together and confused with what to do next. Who were we without our Courtney? What would our family be like without our sunshine? How did we move forward when we were missing a member of the team? 

So many questions. So many tears. 

I was awoken the next morning when I heard a sort of gasping in the baby monitor next to my bed. We had not turned off any of Courtney's monitors. It just never crossed our minds to do so. The reality of life without her was like a cold bucket of water tossed into my sleeping face. It left me heart sick and scared. I listened for a minute or two more before realizing that Jerry was not in bed with me. 

I raced down stairs to find Jerry standing next to Courtney's empty bed with her morning meds in his hands. He looked at me and the tears rained down hard like hail. I held him as he wept "I came down to give her her meds and she's gone Mar. She's gone." I held him and did not let go as his body racked with grief. 

We walked through the next few days in a fog. We had prepared as best we could knowing that her time was short but still. Knowing your child is going to die and actually living through it are two very different things. 

As I sat with my daughters coffin waiting for the funeral Mass to begin, my mind went to Our Lady of Sorrows. I was sitting right next to the Pieta that is in the side chapel at our parish. I studied her face, so much anguish and sadness, yet he hand still reaching out as if to ask the world to join in her grief. On that day, in that moment, I was right there with her. 

To lose your child is to permanently lose a piece of your heart. Life will never be the same. It's not something you ever get over, you just learn to rebuild your life without them. I have leaned into Our Lady's arms every single day since Courtney died, seeking solace and comfort from the grief. There are days my feet are firmly planted here, this side of heaven and there are days that all I want is to be with her, holding her once more in my arms. 

I ask the Blessed Mother to hug my girl for me. I ask her to whisper love into her ears. I ask her to cheer her on as she runs free and wild, as she was meant to. My sweet Mother whispers into my heart every time that Courtney is well and knows nothing but love, just like when she was with us here. She knew nothing but love, She could show nothing but love. The blessing of being her parents still bears fruit to this day. 

I pray it always will. To lose a child requires a fortitude of spirit that I did not know I was capable of. It requires a perseverance in prayer and a trust in the Almighty's plan that goes deeper that I thought possible. It requires me and my husband to rebuild our family's life all while honoring the one who has gone home before us. 

No. I never imagined it turning out this way. But I also can't imagine it happening any other way. We learned. We loved and now we wait to be reunited with our daughter. 

Pray with me won't you;

Dear Mother Mary, 

You wept when your son died. I wept when my daughter died. Death exists because we live in a fallen world. But you know the truth. You walked with me as I wept for my daughter and laid her body in the ground. You showed me how to grieve with grace and still live and helped me find joy once more. You showed me how to trust in God's plan even when I cannot understand any of it, even when I don't want any part of it. You showed me how to walk through the minefield of emotions that comes with death. Stay close my dear Mother. Life goes on without my sweet daughter. God still has plans for me and a job for me to accomplish. Please be with me as I continue to seek joy and to love with my whole self as you have shown me to. 

We ask this in the name of your son Jesus, 


day 19 ~ storms...

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Raising a child with special needs is no easy task. I found myself alone with Courtney most of the time. It was isolating to say the least. Jonathan continued on his own path and before we knew it he left to go to college and Courtney and I tried to find a new way of doing things without big brother around. 

I had learned to listen to Jonathan over the years. He had been through much in his life, not only in regards to his sister but also struggling to find a place to fit in to. He wanted friends and found it difficult to make them. His life was so different than most of his contemporaries. We had tried different things over the years, one on one counseling, support groups and spiritual direction. He never found one that he felt one hundred percent comfortable with. 

He spent three semesters away and then hit rock bottom. Jerry and I could see it happening. I had been praying for years for him to know how much he was loved, for him to know how special he was to us, for him to know how proud we were of him and how we wouldn't be the family we were without him in it. 

He had wanted to go away to school. But sometimes, even though you pray with all your heart and soul, God allows things to happen that break your mother's heart. I knew in my heart he wanted to run away from all the hard.  

As much as I encouraged and told him how important and awesome he was to me and to God, somewhere in his heart he could not accept it. He came home from college wounded, deeply sad and very tired. He was also very, very angry. At us, at God and the whole world. He was angry at everyone but Courtney. After all it wasn't her fault she was the way she was. 

Jerry and I tried to handle things on our own but then on the advice of dear friends, we sought professional help. I praise God to this day for the wonderful Catholic psychiatrists and psychologists who do there best to help those who struggle with depression, PTSD and anxiety. They saved my son and they saved my family.

My heart broke all over again as I had to sit on the sidelines while Jonathan confronted his anger and anxiety. I would pray rosary after rosary in the waiting room during his counseling sessions begging Our Lady, one more time, to cover my baby boy with her mantle of protection. 

"Bring him back to me Mama Mary. Bring back his smile and his joy. Please let him know without a doubt how much he is loved and cared for. Please Mama Mary. Please don't let me loose my son."

I would whisper into Courtney's ear every night asking her to pray for Jonathan. She would just smile and giggle as if to tell me "Oh Mama. Don't worry. God's got this." It was a very long road to recovery for Jonathan. The PTSD from watching his sister almost die time and time again still rears it's ugly head from time to time when someone he cares for is ill or struggling physically. But we stayed the course as a family and fours years after all of this was discovered he became my smiling, joking, intensely private but very tender and caring son again. 

He walked through hell when his sister died and once again, Jerry and I had to hand him over to God trusting that all would be well with the right help. He didn't know who he was without her. Hell I didn't know who I was without her. However God knew who he was and so did our Mother Mary. Each of them showed up in their own special ways to show my son how awesome he really is and that God has a job for him to do, just like he did his little sister.

I celebrate God's faithfulness and praise His name every single time my son hugs me or we share a wonderful laugh together. I thank the Blessed Mother for showing me how to love through prayer and fortitude of spirit. This vocation of motherhood is know joke. It is intense and filled with so many ups and downs. I am constantly amazed that we have made it this far without giving up. 

God is good ALL the time. No matter what storms whip up the oceans in your life, God is there, holding the boat steady. Our Lady is there ready to hold and protect. Jesus is there holding out His hand encouraging us to stretch out and walk on that water, to come to Him and live. 

Pray with me won't you;

Dearest Mother Mary,

So many times I want to give up and just walk away from all the hurt and sadness life can sometimes bring. How much am I supposed to endure as a wife and mother? How much hurt can my heart take before it explodes in hate and despair? You remained by Jesus's side his whole life. They spat on him and whipped him and you remained steady and true, always loving and always praying. How did you remain standing through it all? So much pain Mama. Help me to persevere as you did. Help me to see the truth of the situation like you did. Help me to not walk away from the pain. Help me to stay strong knowing that it is only for a short while as my heart stretches to hold it all. Help me to keep my eyes fixed on heaven and allow me to suffer for a purpose. So that God may be glorified now and always. 

I ask this in the name of your son Jesus, 


day 18 ~ acceptence...

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Life is fragile. 

Breathing is something we take for granted. 

Breathing is something that our Courtney would stop doing when she had a seizure. To watch her struggle to just take a breath was heart wrenching and down right terrifying every single time. It's something I never got used. Never.

There is a seen in Mel Gibson's "The Passion of the Christ" where Jesus is carrying the cross and he falls. His beloved Mother Mary runs to his side to comfort him. The scene shows a flash back of when she did the same when he fell as a small child. She says "I'm here. Mama's here". 

It's what I would say to my daughter when she was struggling during a seizure or crying after her blood was drawn or during an MRI or EEG. "I'm here baby girl. Mama's here." I would whisper a million I love you's or quietly sing to her, anything I could do to keep her calm. 

When we took Courtney to Lourdes on a healing pilgrimage, our whole world was flipped upside down and sideways. We were shocked at how it all turned out. To look back and see the hand of the Lord in it all is amazing to me. He had a plan for our daughter and boy howdy did he make it happen. When we arrived home we were not the same people. We had heard our daughter's voice and we were bound and determined to honor her wishes. 

Accepting that she would be disabled for the remainder of her time with us was not as difficult as I thought it would be. To see my daughter as Our Lord saw her, perfect and whole, came easy to me. I had let go of my children in Lourdes and handed them over to God. They were not mine to hold tight to. They belonged to God and if He needed them home before I was ready to let go, then He would prepare me for that. Even though she was blind, could not speak and would never walk, God was making all thing new again for my daughter. He had opened our eyes and our hearts to truly see her

Remember the movie scene I referenced earlier? When Our Lady falls down next to her son Jesus, she holds his face in her hands and tells him "I am here". The look of love and anguish on her face is one I have become very familiar with. I have seen it in the mirror a million times in 23 years. It's what followed that I had to wrap my head and heart around. 

Jesus says "I am here to make all things new again." 


We had traveled across the ocean, trusted our daughter and ourselves to Our Lady of Lourdes intercession. We had laid our children's lives down at the foot of the cross trusting that God would carry us through whatever was coming. We had witnessed a miracle or two and when we came home, sought Our Saviors counsel in prayer. He gave us what our hearts desired. 

To hear our daughter's voice and know that she was ready and willing to take on the challenge that God had called her to. All we were asked to do was love her (and her brother) without condition and be her voice to the world. 

We had finally arrived at the destination the Lord had been leading us to for seven years. He had never pushed but was always right by us, encouraging us to to love more and trust deeper than we though was even possible seven years prior. It had been a hard road with lots of dips and turns but Jerry and I had a peace now that we never thought we would have. 

All because of Our Lady's constant leading

Pray with me won't you;

Dearest Mother Mary, 

You never walked away from your son, even when he was nailed to the cross. You were there always loving him right up to the end and beyond. You never gave up and gave into despair. You loved with all you had and then some. You ran to be by his side at the darkest of times. You cradled his face in your hands and remembered who his father was. God makes all things new. He allows us to chose His love or reject it. Help me Mother Mary to always choose rightly. Help me to choose love, always love, no matter the cost. 

We ask this in the name of your Son, Jesus, 




Friday, May 20, 2016

day 17 ~ sophie's choice...

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When Jerry left the Navy we settled in Northern Virgina. We found a church we loved and settled into to stay. The parish welcomed us with open arms. They took to our little family and we were so happy to be loved and returned it in kind. 

We had decided to homeschool Jonathan before we left Virginia Beach. Courtney went to school so she could receive all her therapies and this way I had one on one time with Jonathan. It was a gift to me, to walk along side my son as he learned about history, literature and religion. The science and math part were his favorites. I hated them and relied heavily on videos and a local tutor.  

Time went on and our family began to heal for all the medical trauma and stress it has caused all of us, especially Jonathan. He had been through so much in the last six years watching Courtney go through all of the tests, surguries, hospitalizations and so on. He hated doctors and when someone came toward him wearing a white coat, he would take a step behind me. 

It ate away at me that we were constantly having to choose between our children and their needs. Jerry and I were stretched financially and emotionally. Courtney's seizures were still a daily occurrence but we had gotten used to them. We just went with the flow trying to achieve "normal" as best we could staying calm and working through whatever crisis came our way. We lived each day trying to anticipate what would come and be prepared but not scared. 

I thought we were all doing pretty well until Jonathan started to throw tantrums and talk back, every day, all day. His attitude was horrid and Jerry and I tried everything we could think of. We talked to him patiently, we sought counsel from our parents and close friends and finally we took him to see a counselor. I felt like such a failure as a parent. I felt like God was making me choose between my kids. I couldn't win no matter what I did. 

One morning I went into Jonathan's room to tell him to get up and ready for the day. I noticed he had blood on his pillowcase and all down one side of his head. I stayed calm and asked what was wrong. He said his ear had been hurting for the last few days but it didn't anymore. I made sure he was not actively bleeding, helped him dress and gathered Courtney and we headed to the ER. 

His ear drum had burst. I can only imagine the pain he had been experiencing. I asked him later that day why he didn't tell Mom or Dad he was hurting he simply said "Courtney just got home from the hospital Mom. I didn't want to worry you and Dad.

Sweet gracious Lord. Help me in this moment. 

He was ten years old and making choices no child should have to. I broke a little right there. I got down on my knees in front of him and assured him of my love and his fathers love. I told him that whatever was happening he should come and tell us, we would always be there for him. 

He looked me straight in the eyes and said "No you won't Mom. Courtney will always need you more. Most days that's OK, but sometimes it hurts so much I just want to die. I don't want to hurt anymore." Tears rolled down his cheeks and he hugged my neck hard. 

What is a mother supposed to do in that moment? What was I supposed to say to him to make the hurt go away?  He had seen so much in the last seven years He had watched his sister fight to breathe time and time again. He had been in countless hospitals right by my side, watching everything that happened to his sister. 

It was too much for a ten year old to take in.

I held my son as he cried. I closed my eyes and prayed  to God to give me the words. I asked Our Blessed Mother to infuse me with the maternal love she had for her Son, so that my son would know how loved and valued he really was. I told Jonathan how much we loved him, how proud his Dad and I were of him. I told him what a great big brother he was to Courtney and how God chose him specifically to be her brother. I told him how much she needed him and how much Dad and I needed him to be a part of our family, to help with God's plan whatever it would be. 

Then I listened. I don't think I had ever listened before. I had never asked if he was OK? Why didn't I ask? What kind of mother was I? 

The questions poured into my brain and I struggled to stay in the moment with Jonathan. I continued to pray to the Blessed Mother as I battled my fear of losing my son right in that moment.  

I breathed deep. I leaned into that moment not knowing what would happen next, his emotions were so intense, and I was scared. I leaned into the knowledge I held in my heart that God was there with us in the fear and the hurt. I leaned into the knowledge that if we just stayed together as a family, we could weather this storm and come out stronger. 

I sat with Jonathan for what seemed like hours. I cried and he talked. He cried and I talked. I prayed throughout the entire time and finally we were all out of tears and words. I made him an ice cream sunday and he spent the next few hours building Legos. 

When Courtney had a seizure later that evening, Jonathan was right there, helping me with her suction machine and telling Courtney it would be OK. Mom and her big brother were right there to help. "Don't be scared Court. You are not alone. I'm here."


Yes, Jonathan was scared. Yes, his heart hurt something fierce. Yes, he had no idea what was going to happen. 

I was right there with him. Only God knew the answer and he wasn't giving away any hints.

Pray with me won't you;

Dearest Mother Mary, 

I'm scared. My heart hurts. I don't know what is going to happen. Will my child die? Do I have enough heart to love them both as they need to be loved? Will my other child resent the one who needs so much? What can I do? Help me Mother Mary. Help me to love without condition, without expectation of that love being returned or of needing it to be returned. Help me to know when to speak and when to be quiet and listen. Help me to lean into the Father's plan for my life even if I don't understand the why of it all. Help me to lean into today without fear of tomorrow. Jesus I trust in you. 

We ask this in the name of your son Jesus, 

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