Isabel did not have her surgery today…
James and I arrived early this morning and filled out all the paperwork. We waited at Day Surgery ready to take on the day. I brought my personal writings/documentations of Isabel’s story to-date as well as any letter I had received that greatly impacted my life. I brought my Pépère’s old rosary in honour of my father’s father, I thought of my darling Mémère, I brought the memory of Grandma Kay’s hand holding tightly to mine before she passed away only days before my emergency C-section and my silent plea for her to watch over my unborn, and I smiled in memory of our feisty Nana Burgess who left us only months ago, “The Great-great”. I remembered Uncle Mike holding Isabel so delicately only months before the Saskatchewan River claimed his life, I thought of Aunt Dorothy’s smile, and I honored all those whom we loved and who have passed before us.
I felt like Izzy was ready for this, that we were ready, that I was ready. We had an army of prayers from the living and loved ones in Heaven who no doubt earned SOME brownie points with The Big Guy and who would be watching over this process. Surely we were ready for anything that happened.
“I’m sorry to say this, but there are no available beds in the Intensive Care Unit and Dr. Hancock (the surgeon) will not do this surgery for Isabel unless she can be monitored in the ICU over the next 24 hours. She is performing an emergency surgery at the moment and will let us know for sure what is happening before noon.”
I turned to James and said, “Gee, when I was feeling like this wasn’t even happening today, I didn’t think it ACTUALLY wasn’t happening today!” I felt so frustrated… the emotional prep time involved, the time off work, coordinating daycare/school/transportation details, the pre-op appointments, the anxiety, the insomnia… We were going to have to do this all over again?????
The nurse came back an hour and half later to say that the surgery was cancelled for today because a baby boy came into emergency needing a serious operation. In fact, I just got off the phone with Dr. Hancock’s office and I asked about the little boy (4 hours later). She said they were still in the Operating Room. Suddenly, I don’t feel angry or frustrated anymore. Let us pray that he will be okay.
So we will try this all over again on Friday June 3, 2005 at 12:00 pm. After the calls I had to make to get her daycare workers in place for tomorrow, Friday and next week along with her Educational Assistant in the classroom and transportation to and from… Good grief, I’m ready for a long nap.
But despite my frustration and exhaustion, I am grateful that this was not one of those incidents where Isabel was the one rushed into emergency again. I am grateful that she was prepared for today and am confident that she will only get stronger until June 3rd. I am prayerful for the little boy whose life will change after today and hope they take good care of him in the ICU.
To my co-workers who were ready to take on my workload this week so that I could be there for Isabel, thank you. I will see you tomorrow, except for you Debbie… unless I drive out to Brandon tomorrow which I’m not so I’ll just leave you more singing messages and ask for more things to do... NOT!
To my family who were ready to take on visiting shifts to ensure that Isabel would never be alone, God bless you. You are always there in the front lines with us and never forget what a gift of comfort that is.
To all of you who prayed, may God bless and keep you always, and may He remember the way you gave of your heart so freely and willingly for the sake of our little Isabel. So let’s brace ourselves and do this all over again next month… I will practice the art of brevity in the meantime and will hopefully only send you a SMALL novel prior to her surgery. (God bless you all for your patience!).
Wednesday, 11 May 2005
Isabel's surgery tomorrow
I can feel the uproar of prayer beginning already…
After a series of several events this evening, I am ready to sit down and invite you to join with me in reflection, in anticipation of tomorrow’s events and in prayer.
I just came home from an evening’s presentation on “charitable donations” at a Golf Country Club and was greeted with Mélina’s bright smile. “Guess what, Mom… I was feeling really sad and scared at school today about Izzy’s surgery tomorrow and I started to sniffle a little bit. I went to the front of the class and told everyone what would happen to Izzy tomorrow and why she needed this help, like you know, how she isn’t growing and she can’t eat or talk or walk and stuff. I told them that she would probably be coming out of the hospital on her Birthday, so guess what the class worked on? We all made ‘get well soon’ and ‘Happy Birthday’ cards for Izzy. Look at all of them!” And there on the kitchen table was a mountain of handmade cards for our little Izzy. What a phenomenal big sister, what an unconditional individual, what a blessed being… my Mélina.
Earlier, at this Country Club dinner & presentation hosted by TD Waterhouse (I am always nervous at these things because I can never figure out which fork is used when, and what do you mean I can’t lick my plate clean!) I got to sit at a table with 5 well-dressed, well-mannered business men. As the evening progressed, the conversation went from psychiatric wards to how quickly women are being discharged from hospitals after birth (I’m really not sure how one topic led to the next). Surprisingly, birthing stories from these men were shared ranging from “not being allowed in the room in those days and waiting in the waiting room also known as “the bar”, to being present at their own grandson’s birth, to offering their overdue next door neighbor a plunger to ‘help things along’ (I never did ask if he got his plunger back…). In a room full of professionals, we laughed the most. I eventually was led back to my own experience with Isabel and shared with them the story of the woman who shared my hospital room after Izzy was born.
It was only hours after the surgery and I was in so much pain from the C-section and shaking with fear of the unexpected. How was my little Isabel? Was everything okay? When would I see her? Is it harmful to her that I am not near? Will she live? These whirlwind of thoughts were interrupted by a tiny cry and nurses bringing in their newest patient to the bed next to mine… a young woman with her brand new baby girl. I smiled for you can never see a newborn without smiling, but the ache in my heart longed to hear the sounds of my baby and not knowing if I ever would.
“Your baby girl is very beautiful.” “Thanks. I didn’t even want to have a baby. I don’t know anything about them.” The ache was growing. The baby sneezed and the woman panicked “Oh my God! I think she’s choking or something!” “Don’t worry, that was just a sneeze.” It took some time to settle the mother each time her baby sneezed, but eventually the conversation grew and I discovered that she didn’t even want to try breastfeeding. Through mild prompting, she shared that she didn’t think she would be able to make enough milk. I shared whatever wisdom I had in this area (shared antibodies, changed nutritional content to meet baby’s needs, supply and demand, etc…). She listened attentively and then asked “So where is your baby?”
I couldn’t help the tears.
I told her the story of Isabel Faith and shared my fears. She listened so attentively and with such empathy. She finally said, “Don’t worry, we both have little Taurus’ and that means they are stubborn as bulls. Your little girl will be just fine.”
That night, baby Marina was having a hard time settling and I could tell that the mother was exhausted. To my surprise, she’d even tried breastfeeding! I asked her if I could hold Marina so she could sleep. She was more than happy.
When I say God’s Will is undeniable, it is because I have been too blessed to be blind to His gifts. The moment I rocked little Marina in my arms and sang to her just as I would have had Isabel been in my arms at that moment, Marina settled and fell into sleep. I did not take my eyes from her for several hours and I did not even notice the abdominal pains anymore. It felt like a little gift from God, a message to say “I cannot give you your flesh and blood to hold tonight, but you can hold another.”
On the mother’s final day, family visitors and grandparents came by. Marina sneezed again and they all panicked, just as the mother had only days before. She settled their minds and said, “Don’t worry, it’s just a sneeze.” A curtain separated us at that moment, so no one saw my big smile.
Before she left, the mother came to my bedside and said “thank you”. “What on earth for?” “In hearing about your little Isabel and how she fights to live, I realize how lucky I am to have my Marina. Thank you for teaching me how to care for her. I will think of your Isabel every May 17th and pray that she is well. Maybe our little Taurus’ will play together someday.”
Maybe they will.
And so Isabel touched her first life simply for having chosen to live. And choose to live, she did.
I’ll never forget that panicked moment. The numbing pressure in my abdomen as the doctors worked on getting Isabel out of me as fast as possible. They warned me that there would be no sounds from her, she was far too premature. All I heard was “my God, that’s small” and my heart began to race and tears filled my eyes but I could feel her little determination. And there it was… three little cries as though a little lamb entered the room. I remember looking at James and smiling. “She wants to live. She will be okay.”
She wants to live. She has fought to live for nearly six years to the day now. Who do you know who chooses life, who fights for the privilege of life? How many times have you felt like giving up?
Isabel wants to live. Isabel fights to live. Isabel will be okay until it is her time to go.
When logic creeps into my mind, so does the fear about the risks involved with tomorrow’s surgery. Izzy has had a rough couple of weeks leading up to it. She was severely congested due to vomiting and having aspirated into her lungs again. The doctors warned that the surgery would have to be postponed if it did not clear in time. But tonight, her lungs are clear. Tomorrow, she will be ready.
Twelve noon, she will be put under and the skilled surgeons of Children’s Hospital will begin to work on her little body for the next three delicate hours. And your prayers will be there with her.
Because of her delicate lungs, they will not be providing a pain killer (narcotic) via intravenous. Isabel will have an epidural for several days. With a needle being in the spine, there is risk of damage and the fact that they will need to keep it in longer than usual will increase her risk of infection, but the alternative would be to risk her breathing becoming too shallowed…
I wish so much I could be in that operating room with her. I remember demanding to hold her during her eye laser treatment when she was only 3 months old and singing to her as the ophthalmologist did things to her eyes that left me feeling nauseous in retrospect. I want her to know I am nearby. I want her to feel my presence. I want to be right there… just in case.
* * * * * * * * * * *
Before I left that table tonight, my co-worker asked the businessmen to pray for Isabel Faith and tomorrow’s surgery. They each shook my hand and assured me that prayers would find her tomorrow along with many from others who would soon learn of Isabel Faith.
Bless you all in your fight to live and to discover the way you reach others. Clearly you have done something to have reached me and I am glad to have you join me in this journey. I will try to update you all tomorrow evening (depending on Isabel’s state).
Love always,Rita
After a series of several events this evening, I am ready to sit down and invite you to join with me in reflection, in anticipation of tomorrow’s events and in prayer.
I just came home from an evening’s presentation on “charitable donations” at a Golf Country Club and was greeted with Mélina’s bright smile. “Guess what, Mom… I was feeling really sad and scared at school today about Izzy’s surgery tomorrow and I started to sniffle a little bit. I went to the front of the class and told everyone what would happen to Izzy tomorrow and why she needed this help, like you know, how she isn’t growing and she can’t eat or talk or walk and stuff. I told them that she would probably be coming out of the hospital on her Birthday, so guess what the class worked on? We all made ‘get well soon’ and ‘Happy Birthday’ cards for Izzy. Look at all of them!” And there on the kitchen table was a mountain of handmade cards for our little Izzy. What a phenomenal big sister, what an unconditional individual, what a blessed being… my Mélina.
Earlier, at this Country Club dinner & presentation hosted by TD Waterhouse (I am always nervous at these things because I can never figure out which fork is used when, and what do you mean I can’t lick my plate clean!) I got to sit at a table with 5 well-dressed, well-mannered business men. As the evening progressed, the conversation went from psychiatric wards to how quickly women are being discharged from hospitals after birth (I’m really not sure how one topic led to the next). Surprisingly, birthing stories from these men were shared ranging from “not being allowed in the room in those days and waiting in the waiting room also known as “the bar”, to being present at their own grandson’s birth, to offering their overdue next door neighbor a plunger to ‘help things along’ (I never did ask if he got his plunger back…). In a room full of professionals, we laughed the most. I eventually was led back to my own experience with Isabel and shared with them the story of the woman who shared my hospital room after Izzy was born.
It was only hours after the surgery and I was in so much pain from the C-section and shaking with fear of the unexpected. How was my little Isabel? Was everything okay? When would I see her? Is it harmful to her that I am not near? Will she live? These whirlwind of thoughts were interrupted by a tiny cry and nurses bringing in their newest patient to the bed next to mine… a young woman with her brand new baby girl. I smiled for you can never see a newborn without smiling, but the ache in my heart longed to hear the sounds of my baby and not knowing if I ever would.
“Your baby girl is very beautiful.” “Thanks. I didn’t even want to have a baby. I don’t know anything about them.” The ache was growing. The baby sneezed and the woman panicked “Oh my God! I think she’s choking or something!” “Don’t worry, that was just a sneeze.” It took some time to settle the mother each time her baby sneezed, but eventually the conversation grew and I discovered that she didn’t even want to try breastfeeding. Through mild prompting, she shared that she didn’t think she would be able to make enough milk. I shared whatever wisdom I had in this area (shared antibodies, changed nutritional content to meet baby’s needs, supply and demand, etc…). She listened attentively and then asked “So where is your baby?”
I couldn’t help the tears.
I told her the story of Isabel Faith and shared my fears. She listened so attentively and with such empathy. She finally said, “Don’t worry, we both have little Taurus’ and that means they are stubborn as bulls. Your little girl will be just fine.”
That night, baby Marina was having a hard time settling and I could tell that the mother was exhausted. To my surprise, she’d even tried breastfeeding! I asked her if I could hold Marina so she could sleep. She was more than happy.
When I say God’s Will is undeniable, it is because I have been too blessed to be blind to His gifts. The moment I rocked little Marina in my arms and sang to her just as I would have had Isabel been in my arms at that moment, Marina settled and fell into sleep. I did not take my eyes from her for several hours and I did not even notice the abdominal pains anymore. It felt like a little gift from God, a message to say “I cannot give you your flesh and blood to hold tonight, but you can hold another.”
On the mother’s final day, family visitors and grandparents came by. Marina sneezed again and they all panicked, just as the mother had only days before. She settled their minds and said, “Don’t worry, it’s just a sneeze.” A curtain separated us at that moment, so no one saw my big smile.
Before she left, the mother came to my bedside and said “thank you”. “What on earth for?” “In hearing about your little Isabel and how she fights to live, I realize how lucky I am to have my Marina. Thank you for teaching me how to care for her. I will think of your Isabel every May 17th and pray that she is well. Maybe our little Taurus’ will play together someday.”
Maybe they will.
And so Isabel touched her first life simply for having chosen to live. And choose to live, she did.
I’ll never forget that panicked moment. The numbing pressure in my abdomen as the doctors worked on getting Isabel out of me as fast as possible. They warned me that there would be no sounds from her, she was far too premature. All I heard was “my God, that’s small” and my heart began to race and tears filled my eyes but I could feel her little determination. And there it was… three little cries as though a little lamb entered the room. I remember looking at James and smiling. “She wants to live. She will be okay.”
She wants to live. She has fought to live for nearly six years to the day now. Who do you know who chooses life, who fights for the privilege of life? How many times have you felt like giving up?
Isabel wants to live. Isabel fights to live. Isabel will be okay until it is her time to go.
When logic creeps into my mind, so does the fear about the risks involved with tomorrow’s surgery. Izzy has had a rough couple of weeks leading up to it. She was severely congested due to vomiting and having aspirated into her lungs again. The doctors warned that the surgery would have to be postponed if it did not clear in time. But tonight, her lungs are clear. Tomorrow, she will be ready.
Twelve noon, she will be put under and the skilled surgeons of Children’s Hospital will begin to work on her little body for the next three delicate hours. And your prayers will be there with her.
Because of her delicate lungs, they will not be providing a pain killer (narcotic) via intravenous. Isabel will have an epidural for several days. With a needle being in the spine, there is risk of damage and the fact that they will need to keep it in longer than usual will increase her risk of infection, but the alternative would be to risk her breathing becoming too shallowed…
I wish so much I could be in that operating room with her. I remember demanding to hold her during her eye laser treatment when she was only 3 months old and singing to her as the ophthalmologist did things to her eyes that left me feeling nauseous in retrospect. I want her to know I am nearby. I want her to feel my presence. I want to be right there… just in case.
* * * * * * * * * * *
Before I left that table tonight, my co-worker asked the businessmen to pray for Isabel Faith and tomorrow’s surgery. They each shook my hand and assured me that prayers would find her tomorrow along with many from others who would soon learn of Isabel Faith.
Bless you all in your fight to live and to discover the way you reach others. Clearly you have done something to have reached me and I am glad to have you join me in this journey. I will try to update you all tomorrow evening (depending on Isabel’s state).
Love always,Rita
Tuesday, 22 March 2005
Isabel's surgery date
Just a quick follow-up…
First of all, thank you to all of you for your amazing encouragement. I am truly blessed.
Secondly, the meeting with the surgeon went very well. James and I were able to clarify on certain things. The procedure will be 3 hours and the incision will only be a couple of inches. The only major risk will be when they sever the blood vessels between the stomach and the spleen in order for them to manipulate the stomach. Otherwise, she will be right back to normal within a week (hospital stay is 6 days). I feel a lot more at peace with our decision and I look forward to Isabel gaining some proper weight. I have also talked with other parents whose children went through this procedure and there was definitely a consensus on the feeling of “I wish I’d done it sooner”, so who knows.
Surgery date has been set for May 11, 2005 at 12:00 pm.
I will make a point of keeping you all updated on the outcome. Thank you for your prayers and for being part of this journey with me. God bless you all in your own journeys and know that my prayers always seek you out!
First of all, thank you to all of you for your amazing encouragement. I am truly blessed.
Secondly, the meeting with the surgeon went very well. James and I were able to clarify on certain things. The procedure will be 3 hours and the incision will only be a couple of inches. The only major risk will be when they sever the blood vessels between the stomach and the spleen in order for them to manipulate the stomach. Otherwise, she will be right back to normal within a week (hospital stay is 6 days). I feel a lot more at peace with our decision and I look forward to Isabel gaining some proper weight. I have also talked with other parents whose children went through this procedure and there was definitely a consensus on the feeling of “I wish I’d done it sooner”, so who knows.
Surgery date has been set for May 11, 2005 at 12:00 pm.
I will make a point of keeping you all updated on the outcome. Thank you for your prayers and for being part of this journey with me. God bless you all in your own journeys and know that my prayers always seek you out!
Thursday, 10 March 2005
Another request for your prayers
Blessed family and friends,It has been far too long since I have written and already relief fills me as I type these very words…
I’m sorry to come to you only when I need prayers. I want you to know that I pray for all my loved ones every night and thank God for all of you. It is much like a gift to me for it is almost like an invitation for memories to remind me of how you have entered my life, and my heart.
Many things have happened since I last wrote. Too many to delve into details but the bigger ones being:
- James and I now share 50-50 custody and an undying love for our two girls and a friendship that has truly stood the test of time.
- Mélina continues to fill my days with amazement at her loving spirit and talents. She is growing quickly and makes me laugh with her sense of humour!
- I started a new job as a Program Manager with Junior Achievement.
- We got a ShiTzu puppy named Tobe.
- Isabel started kindergarten. The day was very moving for me as the children in Isabel’s class began to chant her name as I wheeled her in front of the classroom. I felt like Moses parting the sea of children as they made way to welcome this special being. They surrounded her and gentle hands touched her face as Isabel smiled at all of them. It felt like a sacred moment between angels and I almost felt guilty for witnessing something so simple, so pure and unspoken.
- Isabel developed asthma.
- Isabel has gone blind in her left eye.
- Isabel has been growing less and less tolerant of food and has thus lost weight consistently these last several months.
The latter is why I write to you now. Isabel now weighs less than 2 years ago (20 lbs) despite the fact that she has grown in length. I am frustrated, tired and scared. Manitoba Home Nutrition Program has monitored her closely and tomorrow we meet with a surgeon. A Fund Placation is inevitable. Without it, Isabel will continue to vomit and grow weaker and weaker. She is already skin and bones and has to work very hard to fight infections. They will want to do the surgery within a month or two and she will be hospitalized for a week.The procedure itself lasts two hours and involves opening the chest cavity to access the stomach. Stomach tissue will then be stretched to overlap the esophagus creating a barrier and preventing stomach content from coming back up. She will no longer vomit and choke, which used to cause infections in her lungs.
Isabel has been rushed to the resuscitation room on several occasions this last year and a half. I am more aware now than ever that her little body is fragile despite her strong spirit… and yet she never shows frustration at the lack of parallelism between the two.
I ask for prayers of wisdom. We have been asked several times to discuss medical intervention and palliative procedures. I cannot ever look doctors in the eye without bursting into tears… especially when Isabel is in my arms. Would it mean giving up on her or would it mean letting her go? This is an internal struggle that breaks my spirit.
I know that Isabel’s time here is limited. We have been told that life expectancy could be up to age 12 and that children like Isabel often go in their sleep, a final seizure in which they do not return. I only pray that I am there, that I get to say goodbye and thank her for coming to us. Isabel was born, much like a sacrificial lamb, to teach so many of us to value the circumstances we find ourselves in for they can never break the spirit. She has touched so many lives without ever saying a word, and so many people know that toothy grin of hers. Children always ask for her and they always miss their “Lizabel”. 
Mélina was born and touched certain people’s lives who were questioning being here at all. I believe that she saved their lives. Her independent spirit used to make parenting seem quite challenging at times, but I see now why she was blessed with such inner strength. Mélina has had to loose much parental time and rather than being resentful, she includes herself in what needs to be done for Isabel. Her tenderness and love for her little sister, reminds me to find your place in everything you do.
Who would I have been without my two children? What life would there have been to live without the love they awoke in me?Blessed beings. Their hidden wings are not hidden from me. I know Mélina will be here a very long time, but I can’t help the feeling that Heaven’s song calls to Isabel. Sometimes I fear that she is waiting for me to embark upon a degree in medicine or food nutrition. Sometimes I fear meeting what she came here to do, for I do not want to let her go. But I honour her mission, whatever it is, and am glad to have those around me who remind me to be strong in my own path.
Yes, it has been far too long. I can now cry as I take the time to acknowledge the path to-date and the ones who have encouraged our every step.
Thank you for your presence and thank you for loving my children through your prayers. I appreciate those of you who contacted me to remind me to get back on the wagon with these updates! I will try not to use “life” as an excuse not to sit down and write again because it is “life” that finally comes back to me through this very outreach.
God bless you all.
Monday, 28 July 2003
Tyler’s playground
Being a beautifully radiant day, I brought my girls to the park in hopes of soaking in the moment and the sunlight. Melina was so excited. With a smile, I watched her hair bounce as she ran towards the play structure. I was able to settle myself on a nearby bench when I heard this ten year old boy yelling at her to give him money or candy before getting on the structure. Being a sensitive soul, she came running to me crying. My initial feeling was mother bear anger and I walked up to that boy to see what was the problem. I scanned the playground to see where his parents might be, but I was the only adult in the park. Well, this boy would get a no-bully speech from me! But the minute I saw his eyes, my anger dissipated and my heart wept for the life this little boy must know...
His stare was defiant. Anger. He looked ready to spit at anything that came within ten feet of him. He glared at me and said, "No one comes on here unless they give me money or gum." The moment lingered as he anticipated my remark. His surface seemed tough as armor, but in that stillness, all I could hear was the beating of his heart. I smiled at him and said, "Goodness gracious! You couldn't fit more gum in your mouth if you wanted to. Foodland is just around the corner. Why don't you go treat yourself to some gum or candy there?"
He looked a bit surprised. Then he stuck a big stick out towards me and pretended to shoot at me, so I responded by saying, "Wow, you've got a great imagination! What else can you do with that stick?" This clearly stunned him. He lowered the stick as though unsure of what to do next. He actually began thinking and showing me that it could also be a grenade launcher. I suggested it could be a fire hose and we began to imagine he was saving the playground and the children on it. His imagination took over and the other children seemed to come in a little closer as he began including them in his new game.
At one point he fell and scrapped himself pretty badly. I immediately ran to him and asked to see his scrape. It was bleeding and the boy acted tough in front of the group of children who began to gather around him. "I get bruises and scars all the time" he said. I responded by saying "but this time, you are going to take care of it and get yourself a Band-Aid. Do you live nearby?" He replied that he didn't have any Band-Aids at home and that he wasn't going home. One of the other children was eager to help and ran home to get a few bandages.
When I placed the Band-Aids on this boy's shin, I literally watched him transform from a prickly, vulgar porcupine into a broken little boy who just needed to be loved. I pushed him on the swing, (along with six other children), and he told me that his name was Tyler. He watched me fix some of the swings that were wrapped too high to be used, and he watched as I pushed other kids on the swings. He almost looked clumsy and awkward sitting there. It’s as though he’d been stripped of what he thought was safe to discover it only left him all alone. This identity that kept him safe from the disappointments of not being loved enough had turned him into something unlovable. Or so he believed.
This is when I hear the children more than ever. When there is more behind their eyes than youthful twinkles, I am overwhelmed with love for these little ones. All children should be loved, and all children should have someone wipe their scrapes and bandage them up tenderly. All children should feel safe about running to their own home.
I think of Tyler often and have not seen him since that day. I often hope that the moon soothes his dreams and blankets his world from the pain I saw in his eyes, and that he be reminded that a heart is always lovable, no matter how deep and how long it is buried from others.
His stare was defiant. Anger. He looked ready to spit at anything that came within ten feet of him. He glared at me and said, "No one comes on here unless they give me money or gum." The moment lingered as he anticipated my remark. His surface seemed tough as armor, but in that stillness, all I could hear was the beating of his heart. I smiled at him and said, "Goodness gracious! You couldn't fit more gum in your mouth if you wanted to. Foodland is just around the corner. Why don't you go treat yourself to some gum or candy there?"
He looked a bit surprised. Then he stuck a big stick out towards me and pretended to shoot at me, so I responded by saying, "Wow, you've got a great imagination! What else can you do with that stick?" This clearly stunned him. He lowered the stick as though unsure of what to do next. He actually began thinking and showing me that it could also be a grenade launcher. I suggested it could be a fire hose and we began to imagine he was saving the playground and the children on it. His imagination took over and the other children seemed to come in a little closer as he began including them in his new game.
At one point he fell and scrapped himself pretty badly. I immediately ran to him and asked to see his scrape. It was bleeding and the boy acted tough in front of the group of children who began to gather around him. "I get bruises and scars all the time" he said. I responded by saying "but this time, you are going to take care of it and get yourself a Band-Aid. Do you live nearby?" He replied that he didn't have any Band-Aids at home and that he wasn't going home. One of the other children was eager to help and ran home to get a few bandages.
When I placed the Band-Aids on this boy's shin, I literally watched him transform from a prickly, vulgar porcupine into a broken little boy who just needed to be loved. I pushed him on the swing, (along with six other children), and he told me that his name was Tyler. He watched me fix some of the swings that were wrapped too high to be used, and he watched as I pushed other kids on the swings. He almost looked clumsy and awkward sitting there. It’s as though he’d been stripped of what he thought was safe to discover it only left him all alone. This identity that kept him safe from the disappointments of not being loved enough had turned him into something unlovable. Or so he believed.
This is when I hear the children more than ever. When there is more behind their eyes than youthful twinkles, I am overwhelmed with love for these little ones. All children should be loved, and all children should have someone wipe their scrapes and bandage them up tenderly. All children should feel safe about running to their own home.
I think of Tyler often and have not seen him since that day. I often hope that the moon soothes his dreams and blankets his world from the pain I saw in his eyes, and that he be reminded that a heart is always lovable, no matter how deep and how long it is buried from others.
Sunday, 15 June 2003
My Father
My father let me wrap my little hand around his two fingers when we’d go walking, and so I learned to trust.
My father would let me mimic the footsteps he’d take, and so I learned to journey forth with confidence.
My father held me, sometimes a little too tightly, when monsters lurked in my world, and so I learned to feel safe.
My father let me feel my feelings without judging them, and so I learned to feel okay with who I was and how to cope in various situations.
My father listened when I would talk about the world and my understanding of it, and so I learned to appreciate thought and questioning.
My father would take me to church and I would watch him love and appreciate the Lord, and so I learned that faith was about the way you lived.
My father fed me food that nourished my body, and so I learned to value health.
My father took time every night to tuck me in and make me feel as though I was important, and so I learned that I was.
My father would help me even when I felt ashamed, and so I learned to rise again.
My father would teach me about trees and birds, and so I learned to pay attention to detail.
My father would speak kindly even of those who hurt him, and so I learned to be positive.
My father would acknowledge strangers and put a smile on their face, and so I learned to be friendly.
My father has lived every moment of his life with honor and dedication, and so I have learned how lucky I am to have been blessed with such a wonderful person as my father.
My father would let me mimic the footsteps he’d take, and so I learned to journey forth with confidence.
My father held me, sometimes a little too tightly, when monsters lurked in my world, and so I learned to feel safe.
My father let me feel my feelings without judging them, and so I learned to feel okay with who I was and how to cope in various situations.
My father listened when I would talk about the world and my understanding of it, and so I learned to appreciate thought and questioning.
My father would take me to church and I would watch him love and appreciate the Lord, and so I learned that faith was about the way you lived.
My father fed me food that nourished my body, and so I learned to value health.
My father took time every night to tuck me in and make me feel as though I was important, and so I learned that I was.
My father would help me even when I felt ashamed, and so I learned to rise again.
My father would teach me about trees and birds, and so I learned to pay attention to detail.
My father would speak kindly even of those who hurt him, and so I learned to be positive.
My father would acknowledge strangers and put a smile on their face, and so I learned to be friendly.
My father has lived every moment of his life with honor and dedication, and so I have learned how lucky I am to have been blessed with such a wonderful person as my father.
Tuesday, 13 May 2003
Immersed
If I was to describe my world tonight, this is what I would say...
It would be night: one of those quiet nights where nothing stirs, and if not for the crickets, one would think life stood still. The sky is clear and so very big. It reminds me of life beyond and the countless worlds waiting for me.
I am barefoot in the grass, wet grass from humidity and remnants of the days sprinkling shower. I can feel the mud beneath my feet as I walk. I fear the night and the unknown. My heart thumps loudly. I am alone with the shadows of the night and I do not know where I am walking. I think it's towards a river. No, not a river. Something slower, more still. But I am headed towards water. The moon is full and illuminating my path, my unknown path. And yet I walk as though I've done this before.
My nightgown clings to me from the heat of the night and my hair is damp. I am alone on this road towards something that feels familiar yet foreign in the night setting.
My thoughts are deceiving. They try to scare me with false shadows lurking nearby watching my every step. I look to the moon and the stars for reassurance and call upon the sense of being guided. But why am I alone? Why is it night? Where am I going? It is a feeling of being set apart. The comforts of my world in daylight include those whom I love. But the night has awakened only me and those whom I love do not know of my absence. I am forgotten, unmissed, unnoticed.
My feet greet the feeling of water. I am here. I keep coming here. I am so afraid of swimming in the night. I am too afraid of what I do not know. And even though the element of water has always been my savior, I cannot trust her to honor me in the shadows of the night. But if I do not swim this time, I will have to walk back home again and awaken to my world that remains unchanged. I know that if I do not take that chance, I may not swim to find my freedom. She calls to me every night and I turn away from her. Fear of what she possesses keeps only my feet immersed in her promises.
The moon is as bright as it can possibly be. The world is trying to accommodate my choice but I continue to fear her. What if she drowns me? What if her creatures turn on me? What if her shore escapes me and I am lost forever? I am screaming for her. My heart breaks every moment I turn my back to return home. Why does she call to me in the night? I would not fear her depth in the day! But she is quiet with her subtle sound of water. Patient and quiet like an old lagoon. She calls to me from within and then waits without condition when I arrive, watching as though piercing through my very soul with gentle enigmatic eyes. I cannot know her and yet she feels like she is me. Waiting. Just waiting for me.
This is my world tonight. This is my journey. My water heals me and curses me. She is my greatest love and my greatest fear. I am so afraid of her in this night. And I think I am about to turn my back on her once again. I hate that I do it, but I cannot find my courage. I simply cannot find my courage!
But I fear that she will forget me in time and that she will stop calling to me. I fear forgetting the sound of her future. I fear slipping further and further away from her promises and forgetting that she ever existed. And I will continue to live my life empty of the water from which I emerged. I will forget my home and who I was truly meant to be. I will lose my water and never be the same again...
It would be night: one of those quiet nights where nothing stirs, and if not for the crickets, one would think life stood still. The sky is clear and so very big. It reminds me of life beyond and the countless worlds waiting for me.
I am barefoot in the grass, wet grass from humidity and remnants of the days sprinkling shower. I can feel the mud beneath my feet as I walk. I fear the night and the unknown. My heart thumps loudly. I am alone with the shadows of the night and I do not know where I am walking. I think it's towards a river. No, not a river. Something slower, more still. But I am headed towards water. The moon is full and illuminating my path, my unknown path. And yet I walk as though I've done this before.
My nightgown clings to me from the heat of the night and my hair is damp. I am alone on this road towards something that feels familiar yet foreign in the night setting.
My thoughts are deceiving. They try to scare me with false shadows lurking nearby watching my every step. I look to the moon and the stars for reassurance and call upon the sense of being guided. But why am I alone? Why is it night? Where am I going? It is a feeling of being set apart. The comforts of my world in daylight include those whom I love. But the night has awakened only me and those whom I love do not know of my absence. I am forgotten, unmissed, unnoticed.
My feet greet the feeling of water. I am here. I keep coming here. I am so afraid of swimming in the night. I am too afraid of what I do not know. And even though the element of water has always been my savior, I cannot trust her to honor me in the shadows of the night. But if I do not swim this time, I will have to walk back home again and awaken to my world that remains unchanged. I know that if I do not take that chance, I may not swim to find my freedom. She calls to me every night and I turn away from her. Fear of what she possesses keeps only my feet immersed in her promises.
The moon is as bright as it can possibly be. The world is trying to accommodate my choice but I continue to fear her. What if she drowns me? What if her creatures turn on me? What if her shore escapes me and I am lost forever? I am screaming for her. My heart breaks every moment I turn my back to return home. Why does she call to me in the night? I would not fear her depth in the day! But she is quiet with her subtle sound of water. Patient and quiet like an old lagoon. She calls to me from within and then waits without condition when I arrive, watching as though piercing through my very soul with gentle enigmatic eyes. I cannot know her and yet she feels like she is me. Waiting. Just waiting for me.
This is my world tonight. This is my journey. My water heals me and curses me. She is my greatest love and my greatest fear. I am so afraid of her in this night. And I think I am about to turn my back on her once again. I hate that I do it, but I cannot find my courage. I simply cannot find my courage!
But I fear that she will forget me in time and that she will stop calling to me. I fear forgetting the sound of her future. I fear slipping further and further away from her promises and forgetting that she ever existed. And I will continue to live my life empty of the water from which I emerged. I will forget my home and who I was truly meant to be. I will lose my water and never be the same again...
Tuesday, 28 January 2003
Reflection
I have wandered my world for twenty four years and in that time, I have discovered many things…
That grass was meant to be walked on barefoot and examined closely with a magnifying glass and a young child.
That water was meant to hold you and surround you with serenity and wonder.
That rain was meant to cleanse and share with you the magic of the elements dancing with your emotions.
That wind was meant to be heard, for its wisdom rides on the back of a thousand voices and whirls its way around you, sometimes chilling with things you didn’t know or want to know, and sometimes refreshing with reminders of life’s truth and beauty.
That stars were meant to be caught in the hands of faith and shared with those who dare to breathe that same fragile air of believing the world is still good.
That the moon was meant to be held and lulled to sleep in the arms of the ocean tide and to drift amidst the dreams that wash up along its shore.
That sand was meant to be piled high and crumbled down to remind us that nothing lasts forever but we can always enjoy rebuilding it.
That darkness does not suffocate nor ambush your uncertainty but rather invites you to rest peacefully when dreams can protect you from lurking shadows.
That shadows cannot exist without light.
That hands were meant to hold and caress loved ones and the cheek of a lover’s smile.
That the heart was meant to break a thousand times in order to master its ability to mend itself again.
That the soul is without life if it is without faith.
And that laughter is without sound if it is without love and humility.
That grass was meant to be walked on barefoot and examined closely with a magnifying glass and a young child.
That water was meant to hold you and surround you with serenity and wonder.
That rain was meant to cleanse and share with you the magic of the elements dancing with your emotions.
That wind was meant to be heard, for its wisdom rides on the back of a thousand voices and whirls its way around you, sometimes chilling with things you didn’t know or want to know, and sometimes refreshing with reminders of life’s truth and beauty.
That stars were meant to be caught in the hands of faith and shared with those who dare to breathe that same fragile air of believing the world is still good.
That the moon was meant to be held and lulled to sleep in the arms of the ocean tide and to drift amidst the dreams that wash up along its shore.
That sand was meant to be piled high and crumbled down to remind us that nothing lasts forever but we can always enjoy rebuilding it.
That darkness does not suffocate nor ambush your uncertainty but rather invites you to rest peacefully when dreams can protect you from lurking shadows.
That shadows cannot exist without light.
That hands were meant to hold and caress loved ones and the cheek of a lover’s smile.
That the heart was meant to break a thousand times in order to master its ability to mend itself again.
That the soul is without life if it is without faith.
And that laughter is without sound if it is without love and humility.
Tuesday, 2 July 2002
Immersed
(I wrote this in 2002 when I feared continuing in the life I knew which felt like a slow death versus trusting in God completely and submerging myself in faith to welcome change)
If I was to describe my world tonight, this is what I would say...
It would be night: one of those quiet nights where nothing stirs, and if not for the crickets, one would think life stood still. The sky is clear and so very big. It reminds me of life beyond and the countless worlds waiting for me.
I am barefoot in the grass, wet grass from humidity and remnants of the days sprinkling shower. I can feel the mud beneath my feet as I walk. I fear the night and the unknown. My heart thumps loudly. I am alone with the shadows of the night and I do not know where I am walking. I think it's towards a river. No, not a river. Something slower, more still. But I am headed towards water. The moon is full and illuminating my path, my unknown path. And yet I walk as though I've done this before.
My nightgown clings to me from the heat of the night and my hair is damp. I am alone on this road towards something that feels familiar yet foreign in the night setting.
My thoughts are deceiving. They try to scare me with false shadows lurking nearby and watching my every step. I look to the moon and the stars for reassurance and call upon the sense of being guided. But why am I alone? Why is it night? Where am I going? It is a feeling of being set apart. The comforts of my world in daylight include those whom I love. But the night has awakened only me and those whom I love do not know of my absence. I am forgotten, unmissed, unnoticed.
My feet greet the feeling of water. I am here. I keep coming here. I am so afraid of swimming in the night. I am too afraid of what I do not know. And even though the element of water has always been my savior, I cannot trust her to honor me in the shadows of the night. But if I do not swim this time, I will have to walk back home again and awaken to my world that remains unchanged. I know that if I do not take that chance, I may not swim to find my freedom. She calls to me every night and I turn away from her. Fear of what she possesses keeps only my feet immersed in her promises.
The moon is as bright as it can possibly be. The world is trying to accommodate my choice but I continue to fear her. What if she drowns me? What if her creatures turn on me? What if her shore escapes me and I am lost forever? I am screaming for her. My heart breaks every moment I turn my back to return home. Why does she call to me in the night? I would not fear her depth in the day! But she is quiet with her subtle sound of water. Patient and quiet like an old lagoon. She calls to me from within and then waits without condition when I arrive, watching as though piercing through my very soul with gentle enigmatic eyes. I cannot know her and yet she feels like she is me. Waiting. Just waiting for me.
This is my world tonight. This is my journey. My water heals me and curses me. She is my greatest love and my greatest fear. I am so afraid of her in this night. And I think I am about to turn my back on her once again. I hate that I do it, but I cannot find my courage. I simply cannot find my courage!
But I fear that she will forget me in time and that she will stop calling to me. I fear forgetting the sound of her future. I fear slipping further and further away from her promises and forgetting that she ever existed. And I will continue to live my life empty of the water from which I emerged. I will forget my home and who I was truly meant to be. I will lose my water and never be the same again...
If I was to describe my world tonight, this is what I would say...
It would be night: one of those quiet nights where nothing stirs, and if not for the crickets, one would think life stood still. The sky is clear and so very big. It reminds me of life beyond and the countless worlds waiting for me.
I am barefoot in the grass, wet grass from humidity and remnants of the days sprinkling shower. I can feel the mud beneath my feet as I walk. I fear the night and the unknown. My heart thumps loudly. I am alone with the shadows of the night and I do not know where I am walking. I think it's towards a river. No, not a river. Something slower, more still. But I am headed towards water. The moon is full and illuminating my path, my unknown path. And yet I walk as though I've done this before.
My nightgown clings to me from the heat of the night and my hair is damp. I am alone on this road towards something that feels familiar yet foreign in the night setting.
My thoughts are deceiving. They try to scare me with false shadows lurking nearby and watching my every step. I look to the moon and the stars for reassurance and call upon the sense of being guided. But why am I alone? Why is it night? Where am I going? It is a feeling of being set apart. The comforts of my world in daylight include those whom I love. But the night has awakened only me and those whom I love do not know of my absence. I am forgotten, unmissed, unnoticed.
My feet greet the feeling of water. I am here. I keep coming here. I am so afraid of swimming in the night. I am too afraid of what I do not know. And even though the element of water has always been my savior, I cannot trust her to honor me in the shadows of the night. But if I do not swim this time, I will have to walk back home again and awaken to my world that remains unchanged. I know that if I do not take that chance, I may not swim to find my freedom. She calls to me every night and I turn away from her. Fear of what she possesses keeps only my feet immersed in her promises.
The moon is as bright as it can possibly be. The world is trying to accommodate my choice but I continue to fear her. What if she drowns me? What if her creatures turn on me? What if her shore escapes me and I am lost forever? I am screaming for her. My heart breaks every moment I turn my back to return home. Why does she call to me in the night? I would not fear her depth in the day! But she is quiet with her subtle sound of water. Patient and quiet like an old lagoon. She calls to me from within and then waits without condition when I arrive, watching as though piercing through my very soul with gentle enigmatic eyes. I cannot know her and yet she feels like she is me. Waiting. Just waiting for me.
This is my world tonight. This is my journey. My water heals me and curses me. She is my greatest love and my greatest fear. I am so afraid of her in this night. And I think I am about to turn my back on her once again. I hate that I do it, but I cannot find my courage. I simply cannot find my courage!
But I fear that she will forget me in time and that she will stop calling to me. I fear forgetting the sound of her future. I fear slipping further and further away from her promises and forgetting that she ever existed. And I will continue to live my life empty of the water from which I emerged. I will forget my home and who I was truly meant to be. I will lose my water and never be the same again...
Thursday, 3 January 2002
The path to victory
I write to you all for several reasons:
1) It is my coping mechanism, my therapy. And often in writing, I listen to something inside of me that is lost in all the chaos and noise of this world.
2) To inform and update those who are my life. Afterall, it is family and friends who help guide me with their wisdom, and it is their smile or thoughts and prayers that make "loving" the quintessential part of living.
3) "It takes a village to raise a child" -consider yourselves my village for I believe in creating a network. You all know SOMEONE or SOMETHING and sharing that information is knowledge which in turn is power over what seems a powerless situation. These emails are my documented sequence of events.
Thanks to my mother-in-law, Linda, I have a well organized, (Would a Watson do it any other way?) hi-lighted, duo-tang of information on Candida, Enteral feedings, Nutrition for neurologically affected children, Medicines related to feeding problems, etc... It has been powerful to state my opinions and concerns and have a document from the Pediatric Association of Canada to back me up! The doctors look surprised and one even said he had some catching up to do on his reading!!! OH YEAH!!! BOOM, BABY!
I do not know if I had written it in past emails, but my gut instinct has been what I believe is "gastric emptying delay". It seems to me that Isabel's food sits in her stomach for hours and hours after administering only small amounts. I have mentioned it to doctors but the concern with them is obstruction. Once again, I am not heard.
Well folks, at 8:00 this morning, a barium (a dye inserted in the stomach and monitored over live x-ray) showed that Isabel's pyloric sphincter (muscle at the base of stomach) empties a minute amount of stomach content immediately. However, stomach activity is not happening. Sure enough, two hours later, the food is still in her stomach! Gastric emptying delay!!!!
Now, I have learned that a casein-hydrolysed formula promotes delay of gastric emptying! Which, lo and behold, is the foundation of Isabel's Nutramagen formula! However, a whey-hydrolised formula promotes gastric emptying AND helps with gastroesophagul reflux (Isabel's throwing up)!
Also, osmolality (concentration of substance and its ability to be absorbed through the blood) affects gastric emptying as well. The blood is considered isotonic which means an osmolality of 300. Nutramagen is at 360, therefore being a higher osmolality thus requiring more time to digest. PLUS, the dietitian was concentrating the formula for higher caloric intake for growth creating an even higher number!
Other things such as meds, fat chain lengths, and proteins are contributing factors as well.
So... I have spoken with a feeding specialist from Children's Rehab, Dr.Rempell, and asked her for an elemental formula (partially digested, or broken down) that is whey-hydrolysed based, whose osmolality is closer to being isotonic, AND whose proteins are already broken down. Bing bang boom, she does a bit of searching and finds a brand new formula that is all of these things!
We finally got the okay on restarting Isabel's feeds, so at 3:30 this afternoon, Isabel got her first feeding of (I can't remember the name) along with some Zantac (to help with her stomach acid content -I don't know how long we'll stick to that...it is not feeling quite right, but it will be a part of this process for now) and so far, at 1:26 o'clock in the morning, she is doing just fine!!!
We have avoided a jejunostomy, which is what the pediatrician had scheduled to do without consulting us. It means inserting a longer tube through her stomach, past the pyloric sphincter, past the duodenum (first part of the intestine) and into the jejunum. She would have to be hooked up to a constant pump feeding over 16-20 hours/day. Our concern at that time was, she's already missing the mouth part of digestion and the food break-down, and enzymes required to prep food for tummy. We don't want to bi-pass the stomach as well! Not to mention irritating the pyloric. And she could still vomit and aspirate (when it goes into her lungs) stomach fluid, bile, and acids.
We'll try figuring out her nutritional requirements and work with that before scheduling something like that! But at least we know of another option that avoids the Fund placation (a four hour surgical procedure where they tie the base of the oesophagus to keep fluids from coming back up). Doesn't that sound like a smart idea...blah!
And so my quest has begun. I am educating myself on oils, acidophilus, whey, and other nutritional elements that I believe can help Isabel. I intend to design a formula based on her neurological needs, level of activity, her unique isotonic sensitivity, and peristaltic strength(muscular activity of moving food through the digestive process.)
There must be a way to stimulate stomach activity without using meds. I will seek it, and I will find it.
Oh, another mother's-intuition moment... Yesterday, I felt it was time to take her off the oxygen. They seemed reluctant, but I assured them that we could just keep her hooked up to the Oxygen Saturation monitor for the day and see how she tolerates it. Sure enough, we took those nose prongs out and her sats starting rising. Today, she is at 99%! There is a voice in me that I am learning not to doubt. It cannot be proven in a tube, it cannot be learned through medical school, it cannot be bought or given. It is in each one of us, a thread it seems that links us on a different level of understanding to the people and situations that we can feel within us.
I have believed since I was a little girl that something larger than me resided within my soul. It guided me as a child and left me embracing philosophy and humanity in such a way that seemed to stand out and was told warmed the hearts of my mother and father. It is like a distant thunder in my heart and I have been waiting for the storm. For the first time in a long time, I can hear it again, it is alive. I am alive. And in this new air I seem to be breathing, I will find what my daughter needs, my own "Lorenzo's Oil" if you will. For God has placed within my hands a task as I have asked Him to do since I was a little girl, and I do not intend to present it back to Him until I feel it is complete.
The journey is long, and this is only the beginning. But at least it has finally begun...
"First they ignore you. Then they laugh at you. Then they fight you. Then you win." -Gandhi
1) It is my coping mechanism, my therapy. And often in writing, I listen to something inside of me that is lost in all the chaos and noise of this world.
2) To inform and update those who are my life. Afterall, it is family and friends who help guide me with their wisdom, and it is their smile or thoughts and prayers that make "loving" the quintessential part of living.
3) "It takes a village to raise a child" -consider yourselves my village for I believe in creating a network. You all know SOMEONE or SOMETHING and sharing that information is knowledge which in turn is power over what seems a powerless situation. These emails are my documented sequence of events.
Thanks to my mother-in-law, Linda, I have a well organized, (Would a Watson do it any other way?) hi-lighted, duo-tang of information on Candida, Enteral feedings, Nutrition for neurologically affected children, Medicines related to feeding problems, etc... It has been powerful to state my opinions and concerns and have a document from the Pediatric Association of Canada to back me up! The doctors look surprised and one even said he had some catching up to do on his reading!!! OH YEAH!!! BOOM, BABY!
I do not know if I had written it in past emails, but my gut instinct has been what I believe is "gastric emptying delay". It seems to me that Isabel's food sits in her stomach for hours and hours after administering only small amounts. I have mentioned it to doctors but the concern with them is obstruction. Once again, I am not heard.
Well folks, at 8:00 this morning, a barium (a dye inserted in the stomach and monitored over live x-ray) showed that Isabel's pyloric sphincter (muscle at the base of stomach) empties a minute amount of stomach content immediately. However, stomach activity is not happening. Sure enough, two hours later, the food is still in her stomach! Gastric emptying delay!!!!
Now, I have learned that a casein-hydrolysed formula promotes delay of gastric emptying! Which, lo and behold, is the foundation of Isabel's Nutramagen formula! However, a whey-hydrolised formula promotes gastric emptying AND helps with gastroesophagul reflux (Isabel's throwing up)!
Also, osmolality (concentration of substance and its ability to be absorbed through the blood) affects gastric emptying as well. The blood is considered isotonic which means an osmolality of 300. Nutramagen is at 360, therefore being a higher osmolality thus requiring more time to digest. PLUS, the dietitian was concentrating the formula for higher caloric intake for growth creating an even higher number!
Other things such as meds, fat chain lengths, and proteins are contributing factors as well.
So... I have spoken with a feeding specialist from Children's Rehab, Dr.Rempell, and asked her for an elemental formula (partially digested, or broken down) that is whey-hydrolysed based, whose osmolality is closer to being isotonic, AND whose proteins are already broken down. Bing bang boom, she does a bit of searching and finds a brand new formula that is all of these things!
We finally got the okay on restarting Isabel's feeds, so at 3:30 this afternoon, Isabel got her first feeding of (I can't remember the name) along with some Zantac (to help with her stomach acid content -I don't know how long we'll stick to that...it is not feeling quite right, but it will be a part of this process for now) and so far, at 1:26 o'clock in the morning, she is doing just fine!!!
We have avoided a jejunostomy, which is what the pediatrician had scheduled to do without consulting us. It means inserting a longer tube through her stomach, past the pyloric sphincter, past the duodenum (first part of the intestine) and into the jejunum. She would have to be hooked up to a constant pump feeding over 16-20 hours/day. Our concern at that time was, she's already missing the mouth part of digestion and the food break-down, and enzymes required to prep food for tummy. We don't want to bi-pass the stomach as well! Not to mention irritating the pyloric. And she could still vomit and aspirate (when it goes into her lungs) stomach fluid, bile, and acids.
We'll try figuring out her nutritional requirements and work with that before scheduling something like that! But at least we know of another option that avoids the Fund placation (a four hour surgical procedure where they tie the base of the oesophagus to keep fluids from coming back up). Doesn't that sound like a smart idea...blah!
And so my quest has begun. I am educating myself on oils, acidophilus, whey, and other nutritional elements that I believe can help Isabel. I intend to design a formula based on her neurological needs, level of activity, her unique isotonic sensitivity, and peristaltic strength(muscular activity of moving food through the digestive process.)
There must be a way to stimulate stomach activity without using meds. I will seek it, and I will find it.
Oh, another mother's-intuition moment... Yesterday, I felt it was time to take her off the oxygen. They seemed reluctant, but I assured them that we could just keep her hooked up to the Oxygen Saturation monitor for the day and see how she tolerates it. Sure enough, we took those nose prongs out and her sats starting rising. Today, she is at 99%! There is a voice in me that I am learning not to doubt. It cannot be proven in a tube, it cannot be learned through medical school, it cannot be bought or given. It is in each one of us, a thread it seems that links us on a different level of understanding to the people and situations that we can feel within us.
I have believed since I was a little girl that something larger than me resided within my soul. It guided me as a child and left me embracing philosophy and humanity in such a way that seemed to stand out and was told warmed the hearts of my mother and father. It is like a distant thunder in my heart and I have been waiting for the storm. For the first time in a long time, I can hear it again, it is alive. I am alive. And in this new air I seem to be breathing, I will find what my daughter needs, my own "Lorenzo's Oil" if you will. For God has placed within my hands a task as I have asked Him to do since I was a little girl, and I do not intend to present it back to Him until I feel it is complete.
The journey is long, and this is only the beginning. But at least it has finally begun...
"First they ignore you. Then they laugh at you. Then they fight you. Then you win." -Gandhi
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