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.
Monday, 28 July 2003
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
Monday, 31 December 2001
Frustrated
It has been a few days and it is time for another quick update...
Isabel is still on oxygen, however it has been lowered from ten litres down to one!!! The wounds around her mouth and chin are healing well though Isabel still won't smile (I think she fears tearing her tender lips again).
Her pneumonia is slightly better, though her cough still bothers her. We will attempt some physiotherapy tomorrow to loosen some of the phlegm.
Much to my relief, she has regained her weight. Feedings have not yet resumed and therefore she is kept hydrated with sugar/sodium I.V.
They are wanting to administer two types of medicines: One is Ranitidine or Zantac to help lower the level of acidity in her stomach in order to protect the lining in the oesophagus and to prohibit reflux (throwing up). Side effects include constipation, nausea, headache, abdominal pain and sometimes fever, sore throat, yellowing of eyes or skin!!!! Oh yeah, where do I sign up? Just what my baby needs...more nausea. The other is Metoclopramide (also known as Reglan or Maxeran). This relieves nausea, vomiting and reflux. Okay, good enough. Side effects include: drowsiness, restlessness, constipation or diarrhea, and sometimes spasms of the neck, face or jaw or sudden uncontrolled movements of the arms, legs or eyes. YEAH, RIGHT!! I'm suppose to feel good about her not throwing up anymore, but take on muscular or possibly neurological disfunctions? For crying out loud people! Let's not create more problems!!!!
We are stumped and exhausted. Do we give her these things? Do we just give in to the medical system even though they will not answer me when I ask them "WHY IS HER DIGESTIVE SYSTEM SHUTTING DOWN????" Instead of an answer, I am given a list of drugs to give her. GRRRRRRRR!!!
Oh, here's another fun thing. I am seriously worried about the possibility of Candida being the major factor in all of this, I mean after all, her tongue is suddenly white with thrush, her digestive system is totally affected, her formula's first ingredient is sugar followed by syrups and other forms of sugar, anytime she's had a diaper rash, it has been fungal...etc... So I told the nurse today, "I want a blood test done to detect any Candida antibodies in Isabel." Well, the huff puff was incredible! "Why would you want to do that? She doesn't have Candida! Oh, they don't do that kind of test on children. Her blood cultures will detect if there's any foreign fungi or bacteria in her blood stream." Duh lady, candida IS always in our bodies, it's when there's an overwhelming amount that is dangerous!
Where do we go from here? We will consult with a Nutritionalist NOT A DIETITION and see if we can establish a diabetic formula or an anti-candida one. Perhaps we can heal Isabel through nutrition rather than some stupid formula. Maybe we can focus on caloric intake based on oils rather than sugar, maybe even vary the formula so it's more like eating normally. I don't know. Those meds just scream no to me.
At what point do we say, it is time to give the medicine? Where do we find the people to establish this team that I believe we need to figure out the best possible care for Isabel? When will it all make sense? And for crying out loud, why do I need to get a PhD. to feel like I will finally be heard and respected within those hospital walls?
We need a team. I will find each member one by one. A nutritionalist, a chiropractor, a pediatritian, a researcher, a healing touch specialist, homeopath, nurse and social worker. Maybe I will come across others. But I will build this team and we will work together within the medical network. We will know our resources and establish a plan of action. One that will bring healing and strength to a little girl who fights to live and be here with us. One that will understand her needs and provide to them. One that will be victorious!
I will not give up this fight because my heart screams to me that there is an answer. I will question until it is found. And whether it is what I want to discover or not, my heart will be peaceful knowing that I never stopped seeking and believing.
You are team members as well. You are the support, the love, the prayers that we need to sustain us. You are my friends, my family, my beloveds! (I think I just made up a word) Well, I guess this no longer qualifies as a "quick update." Love and light to all of you and bless you for your messages. They bring such strength to me.
Isabel is still on oxygen, however it has been lowered from ten litres down to one!!! The wounds around her mouth and chin are healing well though Isabel still won't smile (I think she fears tearing her tender lips again).
Her pneumonia is slightly better, though her cough still bothers her. We will attempt some physiotherapy tomorrow to loosen some of the phlegm.
Much to my relief, she has regained her weight. Feedings have not yet resumed and therefore she is kept hydrated with sugar/sodium I.V.
They are wanting to administer two types of medicines: One is Ranitidine or Zantac to help lower the level of acidity in her stomach in order to protect the lining in the oesophagus and to prohibit reflux (throwing up). Side effects include constipation, nausea, headache, abdominal pain and sometimes fever, sore throat, yellowing of eyes or skin!!!! Oh yeah, where do I sign up? Just what my baby needs...more nausea. The other is Metoclopramide (also known as Reglan or Maxeran). This relieves nausea, vomiting and reflux. Okay, good enough. Side effects include: drowsiness, restlessness, constipation or diarrhea, and sometimes spasms of the neck, face or jaw or sudden uncontrolled movements of the arms, legs or eyes. YEAH, RIGHT!! I'm suppose to feel good about her not throwing up anymore, but take on muscular or possibly neurological disfunctions? For crying out loud people! Let's not create more problems!!!!
We are stumped and exhausted. Do we give her these things? Do we just give in to the medical system even though they will not answer me when I ask them "WHY IS HER DIGESTIVE SYSTEM SHUTTING DOWN????" Instead of an answer, I am given a list of drugs to give her. GRRRRRRRR!!!
Oh, here's another fun thing. I am seriously worried about the possibility of Candida being the major factor in all of this, I mean after all, her tongue is suddenly white with thrush, her digestive system is totally affected, her formula's first ingredient is sugar followed by syrups and other forms of sugar, anytime she's had a diaper rash, it has been fungal...etc... So I told the nurse today, "I want a blood test done to detect any Candida antibodies in Isabel." Well, the huff puff was incredible! "Why would you want to do that? She doesn't have Candida! Oh, they don't do that kind of test on children. Her blood cultures will detect if there's any foreign fungi or bacteria in her blood stream." Duh lady, candida IS always in our bodies, it's when there's an overwhelming amount that is dangerous!
Where do we go from here? We will consult with a Nutritionalist NOT A DIETITION and see if we can establish a diabetic formula or an anti-candida one. Perhaps we can heal Isabel through nutrition rather than some stupid formula. Maybe we can focus on caloric intake based on oils rather than sugar, maybe even vary the formula so it's more like eating normally. I don't know. Those meds just scream no to me.
At what point do we say, it is time to give the medicine? Where do we find the people to establish this team that I believe we need to figure out the best possible care for Isabel? When will it all make sense? And for crying out loud, why do I need to get a PhD. to feel like I will finally be heard and respected within those hospital walls?
We need a team. I will find each member one by one. A nutritionalist, a chiropractor, a pediatritian, a researcher, a healing touch specialist, homeopath, nurse and social worker. Maybe I will come across others. But I will build this team and we will work together within the medical network. We will know our resources and establish a plan of action. One that will bring healing and strength to a little girl who fights to live and be here with us. One that will understand her needs and provide to them. One that will be victorious!
I will not give up this fight because my heart screams to me that there is an answer. I will question until it is found. And whether it is what I want to discover or not, my heart will be peaceful knowing that I never stopped seeking and believing.
You are team members as well. You are the support, the love, the prayers that we need to sustain us. You are my friends, my family, my beloveds! (I think I just made up a word) Well, I guess this no longer qualifies as a "quick update." Love and light to all of you and bless you for your messages. They bring such strength to me.
Saturday, 29 December 2001
Officially admitted to Children's Hospital
It is now nearly one in the morning and once again I have just walked home to silence. It has been a long day and only now have James and I walked in from our stay in the hospital.
We nearly lost our little Isabel. When we got to the hospital, her oxygen saturation was at 84% and normally it is anywhere between 98-100. Her heart was beating so rapidly in attempting to work so hard and her breathing was quick and shallow. She could not even move or complain. So as we speak, Isabel is on oxygen and may very well be for some time.
X-rays showed fluid in the lungs which we were concerned about because of her constant vomiting and choking. It is now confirmed that she has pneumonia and is on antibiotics. X-rays of the gut also showed air in large portions throughout her intestines but none near the large intestine. There is concern of obstruction and further investigation is in store for tomorrow.
She has lost two pounds and therefore weighs only fourteen pounds, ten ounces. It has been an endless battle to get her to sixteen pounds. I cannot imagine the challenge if we have just set ourselves back another year.
The doctors were so much better!!!! We had only two instead of six! The senior resident doctor was a young, compassionate woman who listened to my flow of questions, concerns and goal as Isabel's parents. She explained what she saw in the X-rays and talked to us about possible course of action. We told her we wanted a different pediatrician and found one within Children's Clinic. We will meet him tomorrow. I pray God has led us to this one for a reason...
There was talk of the possiblity of a ventilator and of possible surgery to the gut, but nothing has furthered that concern.
Isabel is finally sleeping peacefully without waking from vomiting, from pain, fatigue nor fear. She rests as angels dance above her and as your prayers settle into her.
I miss her. I love her so much. She is my little Isabel Faith and I am grateful for a much more positive experience with Children's Hospital.
May dreams dance in her head and the moon sing in my absence. She will rest peacefully and so will I knowing that she is safe.
Goodnight, my friends. May you also rest peacefully in dreams of life and laughter, and sunshine to fill the rest of your days. I will keep you posted...
We nearly lost our little Isabel. When we got to the hospital, her oxygen saturation was at 84% and normally it is anywhere between 98-100. Her heart was beating so rapidly in attempting to work so hard and her breathing was quick and shallow. She could not even move or complain. So as we speak, Isabel is on oxygen and may very well be for some time.
X-rays showed fluid in the lungs which we were concerned about because of her constant vomiting and choking. It is now confirmed that she has pneumonia and is on antibiotics. X-rays of the gut also showed air in large portions throughout her intestines but none near the large intestine. There is concern of obstruction and further investigation is in store for tomorrow.
She has lost two pounds and therefore weighs only fourteen pounds, ten ounces. It has been an endless battle to get her to sixteen pounds. I cannot imagine the challenge if we have just set ourselves back another year.
The doctors were so much better!!!! We had only two instead of six! The senior resident doctor was a young, compassionate woman who listened to my flow of questions, concerns and goal as Isabel's parents. She explained what she saw in the X-rays and talked to us about possible course of action. We told her we wanted a different pediatrician and found one within Children's Clinic. We will meet him tomorrow. I pray God has led us to this one for a reason...
There was talk of the possiblity of a ventilator and of possible surgery to the gut, but nothing has furthered that concern.
Isabel is finally sleeping peacefully without waking from vomiting, from pain, fatigue nor fear. She rests as angels dance above her and as your prayers settle into her.
I miss her. I love her so much. She is my little Isabel Faith and I am grateful for a much more positive experience with Children's Hospital.
May dreams dance in her head and the moon sing in my absence. She will rest peacefully and so will I knowing that she is safe.
Goodnight, my friends. May you also rest peacefully in dreams of life and laughter, and sunshine to fill the rest of your days. I will keep you posted...
Friday, 28 December 2001
Losing battle
Beloved family and friends,
I am tired. I am worn. I am beginning to feel as though I am fighting a losing battle. Isabel is doing worse than she ever has before.
It began a week after she came home from the hospital. She had a little throw up here, now and again. As the days passed, it became more frequent. We spent $250 on Homeopathic meds and a cleansing program for Isabel over the next two months.
Christmas day, Isabel tolerated her last diluted feeding at 2:00 pm. From then onwards, she would vomit dry heaves, mucus, bile every couple of minutes for the next three days. The acid from her stomach is burning her skin and the constant vomiting is keeping her from sleeping.
James and I have been working around the clock trying to give her several mL's of water every half hour to watch her throw it up only seconds later.
I am so scared. I have faxed a desperate message for help to several paediatricians and I have heard back from none of them. We have been communicating with our Homeopath every couple of hours and they are the only ones to date who have questioned the excess gas she is suddenly producing.
Isabel is gaunt and incredibly frail. I will be taking her back to the hospital in the next hour. First, I will print a medical history document so that the handful of doctors who come in will not ask the same stupid questions. I will also need to print something about Isabel's emotional needs, likes and dislikes in the event that I am unable to be with her at some point.
We don't know what more to do, how much longer to fight, whom to seek and when to finally accept that God's Will may very well be that she leave us.
I held her against my skin in a hot bath a few hours ago and sang to her as her frantic eyes kept moving back and forth. I sang and cried for it felt as though my baby was dying in my arms. "Ave Maria" filled our ears as I poured my heart out in prayer through song. This is the song I sang with my sisters when grandma was dying only days before they took Isabel from my womb. This is the song my sisters and I sang when our uncle unexpectedly drowned in the Saskatchewan River nearly two years ago. And this is the song I will sing if it is time to let her go.
Pray for our strength for I am weak. Pray for our Isabel, that God's Will be honoured and that life be breathed into her for as long as we can ask. Pray that perhaps we discover something new this time and can turn this around quickly. Pray for these tears to stop, for I feel as though I am drowning in this heartache. And at last, pray for our Melina. She is so innocent in all of this whirlwind and I fear the effects of this turmoil.
I do not know what more to ask. Perhaps only that the sound of Isabel fill our ears for the rest of our lives, whether present or only in our hearts. God be with us through this journey.
Amen.
I am tired. I am worn. I am beginning to feel as though I am fighting a losing battle. Isabel is doing worse than she ever has before.
It began a week after she came home from the hospital. She had a little throw up here, now and again. As the days passed, it became more frequent. We spent $250 on Homeopathic meds and a cleansing program for Isabel over the next two months.
Christmas day, Isabel tolerated her last diluted feeding at 2:00 pm. From then onwards, she would vomit dry heaves, mucus, bile every couple of minutes for the next three days. The acid from her stomach is burning her skin and the constant vomiting is keeping her from sleeping.
James and I have been working around the clock trying to give her several mL's of water every half hour to watch her throw it up only seconds later.
I am so scared. I have faxed a desperate message for help to several paediatricians and I have heard back from none of them. We have been communicating with our Homeopath every couple of hours and they are the only ones to date who have questioned the excess gas she is suddenly producing.
Isabel is gaunt and incredibly frail. I will be taking her back to the hospital in the next hour. First, I will print a medical history document so that the handful of doctors who come in will not ask the same stupid questions. I will also need to print something about Isabel's emotional needs, likes and dislikes in the event that I am unable to be with her at some point.
We don't know what more to do, how much longer to fight, whom to seek and when to finally accept that God's Will may very well be that she leave us.
I held her against my skin in a hot bath a few hours ago and sang to her as her frantic eyes kept moving back and forth. I sang and cried for it felt as though my baby was dying in my arms. "Ave Maria" filled our ears as I poured my heart out in prayer through song. This is the song I sang with my sisters when grandma was dying only days before they took Isabel from my womb. This is the song my sisters and I sang when our uncle unexpectedly drowned in the Saskatchewan River nearly two years ago. And this is the song I will sing if it is time to let her go.
Pray for our strength for I am weak. Pray for our Isabel, that God's Will be honoured and that life be breathed into her for as long as we can ask. Pray that perhaps we discover something new this time and can turn this around quickly. Pray for these tears to stop, for I feel as though I am drowning in this heartache. And at last, pray for our Melina. She is so innocent in all of this whirlwind and I fear the effects of this turmoil.
I do not know what more to ask. Perhaps only that the sound of Isabel fill our ears for the rest of our lives, whether present or only in our hearts. God be with us through this journey.
Amen.
Monday, 10 December 2001
At last!
It is with a sigh of relief and a smile on my face that I sit in this chair and once again reach out to all of you. Life has finally settled and I am no longer dizzy from the intensity of this last week. Isabel is upstairs at this very moment, smiling and cooing as Melina sits by her side.
God has blessed us far too much for me to ever be able to doubt the power of prayer. Can you all believe that since the second day in the Hospital, she has not even spit up, let alone throw up ANY of her feedings? She has never gone this long on full strength formula without vomiting! Your prayers embrace our little Isabel and there is a peace surrounding her that has carried her through this ordeal.
I have had several moments of utter disgust in our "Children's Hospital." Just the other day, Isabel's I.V alarm was going off while flashing OCC (occlusion). I was holding Isabel but managed to find the kink in the I.V tube; however, the alarm must be placed on "hold" and then on "resume" for the alarm to register that there is no longer an occlusion. So the nurse came in and started fiddling with the tube. I said, "I already fixed it, you just need to resume it." Well, she continued with her fiddling and managed to clamp the tube within the compartment that threads through the machine. Needless to say, the alarm kept going off. I let her do her thing and finally, I said, "the tube is clamped on the side rather than coming out through the portal underneath." Finally, the situation was resolved; however, my faith in the medical system was severely wounded.
Not to mention the time a huge air bubble was in Isabel's I.V. I called the nurse and they had to remove the air AND they didn't clamp the needle going into Isabel's foot, so she bled all over the bed. GRRRRRRRR!!!!!
Also, her feeding pump was sounding off its alarm and this other nurse couldn't figure out why. I said, "it looks as though you've filled the compartment with too much formula." She said, "no, that's how it’s supposed to be." Finally, after many tries, she went and found the head nurse who came in and said, "Oh, you've got too much formula in the compartment." For the love of Pete! Are they pulling people off the streets and handing them Nursing Degrees or what?
I've shown up at the hospital with Isabel screaming all alone in the crib! (Sigh) I could go on and on and on. After these sequences of events, I asked what needed to happen in order for Isabel to come home. They wanted to see her go from a quarter strength feed, to a half and at last to a full strength at a rate of 40mL/hour. So I spoke with the nutritionalist and established a feeding routine. I showed it to the doctor and I said, "Is there any reason I can't take her home and work her up to these settings in a place where I KNOW she will be taken care of?" They were reluctant but I assured them that I would call the doctor should she start throwing up again.
And so, ladies and gentlemen, the medical team has learned not to mess with this Mama Bear. I bite, and I bite hard if my baby is not completely and totally loved and nurtured. I am her only voice and I promise that it will be loud and clear! So, yesterday, I brought my baby home where she belongs and she has done beautifully since.
But this journey does not end with only this week’s memories to fill our minds. We are left, also with the strains of crisis between husband and wife and finding a common ground with which we can find each other and stay strong. WE are left with a six year old who grieved over her missing sister, and who played with Isabel's toys and watched her baby videos as a coping mechanism. WE are left with a house in disorder and circle under our eyes. But we walk away triumphantly knowing that we can fall, and we can fall hard, but we will always bounce back and be all the more whole.
And never could we proclaim this strength had there not been a team behind us, an army ready to fight and protect us, a sea of love encouraging us with every step we take, and an endless sky of prayer reaching out to heaven and sending it down into our hearts. I want to thank you all once more for being a part of Isabel's life story, for being a part of ours. You reach me and you fill me. How can I ever thank you enough for the power of your faith and love?
God bless you all and know that this family will wake up tomorrow morning and be whole again. I will be whole again. My family. My life. Amen.
P.S. Your prayers have also reached our Victoria for yesterday, she walked out of that hospital with her four younger siblings and her mother by her side. How can anyone doubt after such incredible display of Divine intervention?
God has blessed us far too much for me to ever be able to doubt the power of prayer. Can you all believe that since the second day in the Hospital, she has not even spit up, let alone throw up ANY of her feedings? She has never gone this long on full strength formula without vomiting! Your prayers embrace our little Isabel and there is a peace surrounding her that has carried her through this ordeal.
I have had several moments of utter disgust in our "Children's Hospital." Just the other day, Isabel's I.V alarm was going off while flashing OCC (occlusion). I was holding Isabel but managed to find the kink in the I.V tube; however, the alarm must be placed on "hold" and then on "resume" for the alarm to register that there is no longer an occlusion. So the nurse came in and started fiddling with the tube. I said, "I already fixed it, you just need to resume it." Well, she continued with her fiddling and managed to clamp the tube within the compartment that threads through the machine. Needless to say, the alarm kept going off. I let her do her thing and finally, I said, "the tube is clamped on the side rather than coming out through the portal underneath." Finally, the situation was resolved; however, my faith in the medical system was severely wounded.
Not to mention the time a huge air bubble was in Isabel's I.V. I called the nurse and they had to remove the air AND they didn't clamp the needle going into Isabel's foot, so she bled all over the bed. GRRRRRRRR!!!!!
Also, her feeding pump was sounding off its alarm and this other nurse couldn't figure out why. I said, "it looks as though you've filled the compartment with too much formula." She said, "no, that's how it’s supposed to be." Finally, after many tries, she went and found the head nurse who came in and said, "Oh, you've got too much formula in the compartment." For the love of Pete! Are they pulling people off the streets and handing them Nursing Degrees or what?
I've shown up at the hospital with Isabel screaming all alone in the crib! (Sigh) I could go on and on and on. After these sequences of events, I asked what needed to happen in order for Isabel to come home. They wanted to see her go from a quarter strength feed, to a half and at last to a full strength at a rate of 40mL/hour. So I spoke with the nutritionalist and established a feeding routine. I showed it to the doctor and I said, "Is there any reason I can't take her home and work her up to these settings in a place where I KNOW she will be taken care of?" They were reluctant but I assured them that I would call the doctor should she start throwing up again.
And so, ladies and gentlemen, the medical team has learned not to mess with this Mama Bear. I bite, and I bite hard if my baby is not completely and totally loved and nurtured. I am her only voice and I promise that it will be loud and clear! So, yesterday, I brought my baby home where she belongs and she has done beautifully since.
But this journey does not end with only this week’s memories to fill our minds. We are left, also with the strains of crisis between husband and wife and finding a common ground with which we can find each other and stay strong. WE are left with a six year old who grieved over her missing sister, and who played with Isabel's toys and watched her baby videos as a coping mechanism. WE are left with a house in disorder and circle under our eyes. But we walk away triumphantly knowing that we can fall, and we can fall hard, but we will always bounce back and be all the more whole.
And never could we proclaim this strength had there not been a team behind us, an army ready to fight and protect us, a sea of love encouraging us with every step we take, and an endless sky of prayer reaching out to heaven and sending it down into our hearts. I want to thank you all once more for being a part of Isabel's life story, for being a part of ours. You reach me and you fill me. How can I ever thank you enough for the power of your faith and love?
God bless you all and know that this family will wake up tomorrow morning and be whole again. I will be whole again. My family. My life. Amen.
P.S. Your prayers have also reached our Victoria for yesterday, she walked out of that hospital with her four younger siblings and her mother by her side. How can anyone doubt after such incredible display of Divine intervention?
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