These past two weeks have been very rough. If you read any of my posts, I wanted Lent to bring me to peace. We had a huge scare that Kate possibly had a cancer mass in her brain. No, she doesn't. It was two terrifying days and in the end she has some differences in her eyes from having Down Syndrome. My husband, BJ and I wept in relief.
Being in the hospital exposed her to a stomach flu. It progressed through the other kids in the family. I HATE illness. I can deal with a lot but illness in my children sends me right over the edge of worry. I rely on doctors, but I don't trust them. There is a whole new world of genius doctors out there, saving lives. There are also a whole lot that can't think outside of the box, or for that matter their wallets. We have encircled ourselves with doctors who we trust, but one particular Neurosurgeon at Children's was not it. She was invasive, harsh and looking at Kate as a Down Syndrome not my child...not a gift from God. It turned my stomach and took everything I had to keep it together and not grab my Kate and run from this place.
In the end, what did I learn? Peace? Not even close. I did learn what it is like to have no control of what is happening to your child and it broke part of my soul. I did learn to give it all up to God and pray even while sleeping. I did learn there are angels among us, in particular, a parking valet, a person from my hometown that escorted Kate and I to the different appointments in the hospital and a nurse that got us out of this hospital as quickly as possible. I did learn that people I don't even know were praying and offering up their own pain for our Kate. One in particular friend had started to miscarry her baby when she heard pleas for prayers for Kate. She offered up her own loss for a child she never met...I can't tell you what that meant to my family. It touched our hearts with her sacrifice and love. Also I learned shame. As bad as this all was, there was a moment that made me feel shame.
I was sitting in this sitting area outside of the hospital room looking at downtown Pittsburgh. BJ was taking Kate for a ride in a toy car around the floor. An Amish woman sat down and was using a PHONE! She was telling the person on the other end that her four year old daughter was having seizures for hours! That even after her body stopped seizing, her brain was still seizing. She was crying and then sobbing. They didn't know what was wrong and if her daughter was going to survive. That is the moment I was ashamed. I started to cry and ache for this mother. This poor poor family. Shame on me. From that very moment on everything got better for us and I will never forget the Amish family that BJ, Kate and I became friends with. We promised to pray for them and they in response said they would pray for us. Sometimes in ones own grief we shut doors to what God is trying to teach us. I learned to look around and smile at someone in grief. Hug someone that needs it and thank God for my life even at a time of distress.
After all of this my friend Father Ray Ryland passed away. He was 93. He was so kind to me and so many others. His first words to me after finding out Kate had Down Syndrome was "how truly blessed you all are" then took my hands and prayed for Kate and our whole family. He also helped me when my favorite Uncle Tom was dying of lung cancer and I was helping to care for him. Father Ryland again prayed with me and opened up my heart to accepting what was coming and my job as a Catholic to pray for the dying. I will never ever forget Father Ryland and his many homilies and I hope I can be as kind as he was. Yes, there are Saints and Angels among us...we need to look at what God is showing us.
Being in the hospital exposed her to a stomach flu. It progressed through the other kids in the family. I HATE illness. I can deal with a lot but illness in my children sends me right over the edge of worry. I rely on doctors, but I don't trust them. There is a whole new world of genius doctors out there, saving lives. There are also a whole lot that can't think outside of the box, or for that matter their wallets. We have encircled ourselves with doctors who we trust, but one particular Neurosurgeon at Children's was not it. She was invasive, harsh and looking at Kate as a Down Syndrome not my child...not a gift from God. It turned my stomach and took everything I had to keep it together and not grab my Kate and run from this place.
In the end, what did I learn? Peace? Not even close. I did learn what it is like to have no control of what is happening to your child and it broke part of my soul. I did learn to give it all up to God and pray even while sleeping. I did learn there are angels among us, in particular, a parking valet, a person from my hometown that escorted Kate and I to the different appointments in the hospital and a nurse that got us out of this hospital as quickly as possible. I did learn that people I don't even know were praying and offering up their own pain for our Kate. One in particular friend had started to miscarry her baby when she heard pleas for prayers for Kate. She offered up her own loss for a child she never met...I can't tell you what that meant to my family. It touched our hearts with her sacrifice and love. Also I learned shame. As bad as this all was, there was a moment that made me feel shame.
I was sitting in this sitting area outside of the hospital room looking at downtown Pittsburgh. BJ was taking Kate for a ride in a toy car around the floor. An Amish woman sat down and was using a PHONE! She was telling the person on the other end that her four year old daughter was having seizures for hours! That even after her body stopped seizing, her brain was still seizing. She was crying and then sobbing. They didn't know what was wrong and if her daughter was going to survive. That is the moment I was ashamed. I started to cry and ache for this mother. This poor poor family. Shame on me. From that very moment on everything got better for us and I will never forget the Amish family that BJ, Kate and I became friends with. We promised to pray for them and they in response said they would pray for us. Sometimes in ones own grief we shut doors to what God is trying to teach us. I learned to look around and smile at someone in grief. Hug someone that needs it and thank God for my life even at a time of distress.
After all of this my friend Father Ray Ryland passed away. He was 93. He was so kind to me and so many others. His first words to me after finding out Kate had Down Syndrome was "how truly blessed you all are" then took my hands and prayed for Kate and our whole family. He also helped me when my favorite Uncle Tom was dying of lung cancer and I was helping to care for him. Father Ryland again prayed with me and opened up my heart to accepting what was coming and my job as a Catholic to pray for the dying. I will never ever forget Father Ryland and his many homilies and I hope I can be as kind as he was. Yes, there are Saints and Angels among us...we need to look at what God is showing us.
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