I remember my first Mother's Day, standing in church holding Dear Son close to my heart. The choir was singing, "On this Day O Beautiful Mother." Tears were welling up in my eyes. Dear Son, nearly six months old at the time, had already been through two hospitalizations, one, the first week of life and the second, nearly a month long at Big Academic Medical Center. It was there that they diagnosed the seizures and started him on ACTH therapy. ACTH therapy was a type of steroid injections that were given into his little thigh on a daily basis, as I recall. The home health agency had made a mistake and sent adult needles to our home. We had been through so much in such a short amount of time and yet, it was just the beginning. What never changed was my love for Dear Son. Although my life for him has been different than what I had dreamed for him, and also for me, it has been no less rewarding, maybe even more.
In 2006, he suffered not one but two MRSA pneumonias and nearly died. After the second one, he was no longer allowed to eat by mouth and has remained on g tube feeds ever since. I've fed him on holidays every so often but the reality is that he can no longer tolerate any food by mouth, even then. I miss cooking for him. I hear mothers complain about not wanting to cook or not having time to cook for their families and I envy them. If only....
And yet, I could go on and on about what he can't do, the fact that he can't walk, the fact that he can't sit up on his own, or use his hands, or talk to me. I wish just once, he could magically talk and I could hear his voice and hear what is on his mind. We fantasize about that sometimes. I'll tell him I wish he could talk for just one day and he smiles. I tell him I probably wouldn't say anything since I'd hate to miss a even a second of hearing his lovely voice, if for just a day. His eyes light up as he envisions the fantasy. I always end up telling him that even if he can't speak, it would never change my love for him. He knows that deep in his heart. I have no doubt about that.
And yet, I am enormously blessed. I have his beautiful face to kiss every morning, I have his spirit and his smile. To know he is happy, means a lot to me. He has matured over the years and I am blessed to have seen him do that. If he were not disabled, I might not know that all of the things we normally expect, like walking and talking are blessings.
I know my time with him is limited. I know that it won't be long before the ravages of his progressive neurological disease take over and yet, I am thoroughly enjoying today. I remember when I was thirteen and my father died. I remember how it felt and how everyone in our house cried for three weeks. Every night, I would hear my mother, my sister and I cry over the loss of my father. I know that when I lose my son, it will be worse.
And yet, I came awfully close to losing him to the MRSA pneumonia in 2006. And today, I'll reprint the post of that frightful day. That day, will always be a reminder to cherish each and every moment with him, no matter how small or insignificant those moments may be.
To remember that time, I bought the tea set you see in this picture. I purchased it in the gift shop at Big Academic Medical Center as a reminder of that event. It reminds me of the hardship and the blessing of that Mother's Day, when I came so close to losing him. I also decided to start a collection of tea sets after that.
Today, Dear Son and I will go to a family cookout and celebrate all of the mothers in our family. It will be a great day, because I have my son. And before I eat, I will say a prayer for all of the mother's who lost their sons and daughters this year, for they will need it.
God Bless you all. Have a Happy Mother's Day.
-----
Part III-A Mother’s Day to Remember (Originally published June 1, 2006)
Today’s chest x ray is worse, as if that were an option. I have never seen a chest x ray like this one before. It consists of his head and then it’s solid white from the neck down. There are no ribs or anything on the x ray. It looks like a mistake but it’s not. They have diagnosed him with a MRSA pneumonia and Acute Respiratory Distress Syndrome. I’ll learn in a day or so that he was in septic shock as well. His blood pressure is unstable. They have tried to control it with blood pressure meds but it’s not working. Dear Son’s blood pressure continues to drop. He desperately needs a transfusion. They ask me again, or pressure me rather, and I decline. I have lots of questions and I don’t feel comfortable asking them with ten of them (there is one attending and multiple residents) and one of me. I feel like I am being bullied. I just want a familiar face or at least a one on one with someone. I don’t begin to understand the seriousness of this issue and won’t until a few days from now. If they had presented it to me differently, I might have responded much quicker. In the meantime, they continue the blood pressure meds. His glucose is now unstable as well. They have started him on insulin. His body is retaining fluids in all the tissues. They add the pressure boots to his legs to reduce the swelling. He doesn’t look much like Dear Son anymore. I think his face or jowls, that he has now, make him look more like John McCain. I hate John McCain.
It’s Mother’s Day today. The sun is shining in on Dear Son’s hospital bed and it looks to be a glorious day. Dear Son however looks horrible. He is hooked up from one end to the other. If I were to be truthful, he looks like a corpse with a bunch of attachments hooked up to him. I think to myself that this is not really living and wonder if I am being selfish in wanting him to live or if it’s right that they are saving him. I really don’t know the answer to this. I desperately want to kiss him but am scared of the vent tubing. It reminds me of when he was in the hospital when he was a little boy. I could never hold him in my arms to my chest with the IVs in him and the very first thing I would do when they took them out was to give him a full body hug. I look at him up and down and try to find an open spot to kiss him. He’s got IVs in both feet, the boots on his legs, a catheter, his g tube, a central line in his hip, an arterial line in the other wrist, a blood pressure cuff on his bicep, multiple monitors on his fingers and hands, a ng tube out his nose and the ventilator tubing taped across his face. I kiss him on his knee and tell him I love him. I love him so much. It’s really hard to see him this way. In a way, it seems like he’s already gone.
Good Morning America, the weekend edition, is on television. They show a female soldier’s two sons and have the camera on the sons so they can see their mother. The little boy, who appears to be around five or six, is supposed to wish his mother a happy Mother’s Day. Instead, he begins to cry because he misses his mother. The Pediatric Intensive Care Unit (PICU) nurse sees this part while attending to Dear Son and asks why the little boy on t.v. is crying. I tell her he’s crying because he missed his Mamma and hadn’t seen her since Christmas. I mention that it’s Mother’s Day and suddenly Dear Son’s eyes squinted a bit as if he were trying to open them and finally one eye partially opens and he looked at me. Dear Son’s eyes had been closed for a few days now. I remember the calendar that was sent home from school each day in May where it summarized the highlights for this month. Mother’s Day was on the sheet so I knew Dear Son remembered it. They would always send home these little gifts, that supposedly Dear Son made for me. I would open them and be excited about them and tell him how much I loved them. He would beam ear to ear when I did this. He had an excitement about him that was absolutely contagious. He had been learning about Mother’s Day at school these last few weeks so I know he purposefully opened his one eye to wish me a Happy Mother’s Day. That was the kind of son Dear Son is. He’s very loving and adores his mother. He makes my day.
The PICU Attending Doc arrives in the lobby of the PICU. She has lots of bright yellow and pink tulips in vases for someone. One of the staff delivers one of the vases to me and tells me it’s from the Attending Doc. She bought them for all of the mothers on the floor for Mother’s Day. God bless her heart. I am almost in tears now. I have told Dear Son for years that my two favorite things are flowers and little boys. He would always laugh at me. I find the doc and thank her. She says, “I am sorry you have to be here on Mother’s Day but I wanted to bring you some flowers and wish you a happy Mother’s Day”. I couldn’t think of a nicer thing to say to a mother today. This woman hit the nail on the head.
I spend the day praying. Actually, it was more like begging. I begged the Lord not to take Dear Son on Mother’s Day. Of all the days to take him, this would be the worst. I decide that this would be the absolute cruelest thing in the world that would ever happen to me and pray that it won’t come true. I would forever have Mother’s Day as the death of my only son.
I easily remember my first Mother’s Day when Dear Son was only six months old. He had spent three weeks at this same Big Academic Medical Center when he was only eight weeks old and Ped Neuro Doc had taken care of him. He started on ACTH therapy and had improved. I was so grateful for that. I held him in church on that Mother’s Day and tears streamed down my face as they played “On This Day O Beautiful Mother”. I loved being a mother and was thankful that he was alive. I had never felt more beautiful than I did on that day.
The Rounds occur. They tell me it’s a MRSA pneumonia. Not only that, they tell me the x ray looks worse than yesterday. I can’t imagine how much worse it can look, but take their word for it. I’ll learn later in the week that they had twelve MRSA pneumonias here last year. Seven died. Enough said. I think back to my first day at the local hospital when I asked for the MRSA screen. Why couldn’t they have put this together and figured out it was a MRSA pneumonia? Or at the very least, that they were in trouble? I am angry but let it go. Dear Son is still in big trouble.
The Attending Doc comes in to meet me and asks for the transfusion. She tells me the hemoglobin is 7.5 and they can’t stabilize the blood pressure. I tell her that I wonder how safe they are. She says they are safe but I need more information that that. I ask her if I can donate. She says that would take a few days to test the blood and we don’t have time for that. She says there is only a very, very small risk of contracting Hepatitis C or HIV from the transfusion and that they are safe. I tell her that I won the gene lottery with Dear Son and that if there was a minute chance he would get this gene mutation too. I explain that there are only four children to date in the world with Dear Son’s gene pattern. I tell her that I am not a lucky woman when it comes to this kind of thing. I ask where the blood comes from and she doesn’t know. She says she checks the box off to order the blood and it arrives. I think she should know the answer to this question, meaning what blood bank they use, etc, etc, but I don’t butt heads with her. She is trying to help Dear Son. She explains that in her country, the doctors can just do what they feel is needed for the patients, and don’t have to ask the parents permission. In America, she says, it’s different. I explain to her that it would help if the pc was working in the room. I could have googled transfusions and had a lot of my questions answered and not wasted her time. I wasn’t trying to be difficult, it was more that I wondered if a transfusion was really necessary. I tell her I will think about it.
Hours pass and I decide that it’s not worth it to debate this transfusion. I tell her that I’ll sign off on the transfusion and to have someone bring me the consent papers. I decide that it’s more important for him to live than to worry about the transfusion. Also, I really don’t want him to die today. Not on Mother’s Day.
Today’s chest x ray is worse, as if that were an option. I have never seen a chest x ray like this one before. It consists of his head and then it’s solid white from the neck down. There are no ribs or anything on the x ray. It looks like a mistake but it’s not. They have diagnosed him with a MRSA pneumonia and Acute Respiratory Distress Syndrome. I’ll learn in a day or so that he was in septic shock as well. His blood pressure is unstable. They have tried to control it with blood pressure meds but it’s not working. Dear Son’s blood pressure continues to drop. He desperately needs a transfusion. They ask me again, or pressure me rather, and I decline. I have lots of questions and I don’t feel comfortable asking them with ten of them (there is one attending and multiple residents) and one of me. I feel like I am being bullied. I just want a familiar face or at least a one on one with someone. I don’t begin to understand the seriousness of this issue and won’t until a few days from now. If they had presented it to me differently, I might have responded much quicker. In the meantime, they continue the blood pressure meds. His glucose is now unstable as well. They have started him on insulin. His body is retaining fluids in all the tissues. They add the pressure boots to his legs to reduce the swelling. He doesn’t look much like Dear Son anymore. I think his face or jowls, that he has now, make him look more like John McCain. I hate John McCain.
It’s Mother’s Day today. The sun is shining in on Dear Son’s hospital bed and it looks to be a glorious day. Dear Son however looks horrible. He is hooked up from one end to the other. If I were to be truthful, he looks like a corpse with a bunch of attachments hooked up to him. I think to myself that this is not really living and wonder if I am being selfish in wanting him to live or if it’s right that they are saving him. I really don’t know the answer to this. I desperately want to kiss him but am scared of the vent tubing. It reminds me of when he was in the hospital when he was a little boy. I could never hold him in my arms to my chest with the IVs in him and the very first thing I would do when they took them out was to give him a full body hug. I look at him up and down and try to find an open spot to kiss him. He’s got IVs in both feet, the boots on his legs, a catheter, his g tube, a central line in his hip, an arterial line in the other wrist, a blood pressure cuff on his bicep, multiple monitors on his fingers and hands, a ng tube out his nose and the ventilator tubing taped across his face. I kiss him on his knee and tell him I love him. I love him so much. It’s really hard to see him this way. In a way, it seems like he’s already gone.
Good Morning America, the weekend edition, is on television. They show a female soldier’s two sons and have the camera on the sons so they can see their mother. The little boy, who appears to be around five or six, is supposed to wish his mother a happy Mother’s Day. Instead, he begins to cry because he misses his mother. The Pediatric Intensive Care Unit (PICU) nurse sees this part while attending to Dear Son and asks why the little boy on t.v. is crying. I tell her he’s crying because he missed his Mamma and hadn’t seen her since Christmas. I mention that it’s Mother’s Day and suddenly Dear Son’s eyes squinted a bit as if he were trying to open them and finally one eye partially opens and he looked at me. Dear Son’s eyes had been closed for a few days now. I remember the calendar that was sent home from school each day in May where it summarized the highlights for this month. Mother’s Day was on the sheet so I knew Dear Son remembered it. They would always send home these little gifts, that supposedly Dear Son made for me. I would open them and be excited about them and tell him how much I loved them. He would beam ear to ear when I did this. He had an excitement about him that was absolutely contagious. He had been learning about Mother’s Day at school these last few weeks so I know he purposefully opened his one eye to wish me a Happy Mother’s Day. That was the kind of son Dear Son is. He’s very loving and adores his mother. He makes my day.
The PICU Attending Doc arrives in the lobby of the PICU. She has lots of bright yellow and pink tulips in vases for someone. One of the staff delivers one of the vases to me and tells me it’s from the Attending Doc. She bought them for all of the mothers on the floor for Mother’s Day. God bless her heart. I am almost in tears now. I have told Dear Son for years that my two favorite things are flowers and little boys. He would always laugh at me. I find the doc and thank her. She says, “I am sorry you have to be here on Mother’s Day but I wanted to bring you some flowers and wish you a happy Mother’s Day”. I couldn’t think of a nicer thing to say to a mother today. This woman hit the nail on the head.
I spend the day praying. Actually, it was more like begging. I begged the Lord not to take Dear Son on Mother’s Day. Of all the days to take him, this would be the worst. I decide that this would be the absolute cruelest thing in the world that would ever happen to me and pray that it won’t come true. I would forever have Mother’s Day as the death of my only son.
I easily remember my first Mother’s Day when Dear Son was only six months old. He had spent three weeks at this same Big Academic Medical Center when he was only eight weeks old and Ped Neuro Doc had taken care of him. He started on ACTH therapy and had improved. I was so grateful for that. I held him in church on that Mother’s Day and tears streamed down my face as they played “On This Day O Beautiful Mother”. I loved being a mother and was thankful that he was alive. I had never felt more beautiful than I did on that day.
The Rounds occur. They tell me it’s a MRSA pneumonia. Not only that, they tell me the x ray looks worse than yesterday. I can’t imagine how much worse it can look, but take their word for it. I’ll learn later in the week that they had twelve MRSA pneumonias here last year. Seven died. Enough said. I think back to my first day at the local hospital when I asked for the MRSA screen. Why couldn’t they have put this together and figured out it was a MRSA pneumonia? Or at the very least, that they were in trouble? I am angry but let it go. Dear Son is still in big trouble.
The Attending Doc comes in to meet me and asks for the transfusion. She tells me the hemoglobin is 7.5 and they can’t stabilize the blood pressure. I tell her that I wonder how safe they are. She says they are safe but I need more information that that. I ask her if I can donate. She says that would take a few days to test the blood and we don’t have time for that. She says there is only a very, very small risk of contracting Hepatitis C or HIV from the transfusion and that they are safe. I tell her that I won the gene lottery with Dear Son and that if there was a minute chance he would get this gene mutation too. I explain that there are only four children to date in the world with Dear Son’s gene pattern. I tell her that I am not a lucky woman when it comes to this kind of thing. I ask where the blood comes from and she doesn’t know. She says she checks the box off to order the blood and it arrives. I think she should know the answer to this question, meaning what blood bank they use, etc, etc, but I don’t butt heads with her. She is trying to help Dear Son. She explains that in her country, the doctors can just do what they feel is needed for the patients, and don’t have to ask the parents permission. In America, she says, it’s different. I explain to her that it would help if the pc was working in the room. I could have googled transfusions and had a lot of my questions answered and not wasted her time. I wasn’t trying to be difficult, it was more that I wondered if a transfusion was really necessary. I tell her I will think about it.
Hours pass and I decide that it’s not worth it to debate this transfusion. I tell her that I’ll sign off on the transfusion and to have someone bring me the consent papers. I decide that it’s more important for him to live than to worry about the transfusion. Also, I really don’t want him to die today. Not on Mother’s Day.
Continued...Part IV-The Conclusion
The entire series on the MRSA Pneumonia is here:
9 comments:
I wanted to wish you a very happy mother's day! I've been thinking about you a lot lately... hope things are going well.
Take care
~Sara
Happy Mother's Day to you! Your posts are so thoughtful and caring, I'll bet that is a gift that you have received from your son: the ability to recognize the wonderful and rewarding things in your life.
Happy Mothers day dream Mom.
:)
Your posts are such a precious gift, for all of us to remember our blessings -- the connection between you and Dear, Dear Son is so inspirational. Have a wonderful Mother's Day with a special cup of tea from that lovely tea set, and we all raise a toast to you both.
Dream Mom, I hope you have a great Mothers day with your son and family. What a lovely post - what a good woman and mother you are.
I don't have kids and my mother died almost three years ago. So I have taken the time to ring all my friends and family who are mothers today and wish them a happy day.
Smooches to you today, and every day.
Poppy Q and mum
Happy Mother's Day. If there is any Mother in this world that deserves sheer happiness today ~ it is you.
Happy Mother's Day to a truly inspiration mom! God bless you both...
Dream Mom, I also want to wish you a very happy mother's day.
This is the second mother's day since my own special son passed away. It is beyond hard, but God knew I needed to see him and every night this weekend Joe was in my dreams. I got to hold him and care for him again. It was the best gift I could have received.
I would tell you to cherish these precious days but from your writings I know that you already realize that.
A big hug to your son from me.
xxx
God bless you and Dear Son.
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