(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...
Tuesday, 2 July 2002
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?
Thursday, 6 December 2001
God bless you all!
I cannot begin to describe the feeling of calmness that has settled over me as I have read each one of your loving messages. Thank you for the peace in my heart. It is as though a thousand hands are reaching out to me and I cannot fall amidst their presence. It truly is a heavenly touch that has renewed my energy, cleared my mind and settled my soul.
I am almost tempted to paste and send you a collage of your love and support for it truly is breathtaking. Even in the midst of your own lives, you have reached mine. I pray that as you all take in your own trials and tribulations, a blanket of God's blessings fall upon you and remind you always of the gratitude in my heart. For I cannot even begin to explain the surrealness of this touch of peace. I can breathe.
Let me tell you what your prayers and your tears have done...
Isabel is stable and miraculously, she slept through the night! She is filling her diapers and dehydration is no longer a concern. Her heart rate has dropped down to normal and her electolytes are back to normal as well. We tried to feed her today, but she threw it all up...so we will try again tomorrow.
We are fighting for our concerns to be heard, amidst them is the fear of medicating Isabel rather than addressing the issue. Her body is rejecting the simplest formula out there, what does this mean? We have left a message with Dr.Nielson who, as some of you know, is a Homeopathe who has made significant changes in peoples' lives. We hope to have a voice through her that will look at alternatives to Isabel's intolerance rather than schedule an operation for a fundaplacation (an invasive procedure where they tighten the base of the aesophagus (sp?) to prevent reflux).
Isabel is a fighter. She always has been. She would not be here today if she wasn't. She looked at me today with such appreciation, and I know her little spirit can conquer this. We will figure this out and we will let her be free. No meds, no operations, no nothing that God didn't intend to have in her! We pray that it is His Will that she thrive in this manner.
Victoria is the twelve year old girl in the bed next to Isabel. She has graciously taken on the role of honorary big sister and is quite protective of our Isabel. It has broken my heart to hear of her story and how she has been in the hospital for most of her life. Her kidneys are failing and she is on morphine for the pain. I ask that you include her in your prayers for I spoke with her and loved her and nearly took her on my lap to hold her. Her eyes are old and her body looks worn. God bless Victoria and the journey of her story.
All in all, the house is quiet yet again tonight, but my heart is peaceful knowing that our Isabel sleeps with her little clown next to her and her "Little Bear" videos in the VCR ready when she is... She will not be coming home until she can keep food in her, so let us pray for her clever little body, and for the right questions to lead us to the right answers.
Thank you for the sound of angels that surround me. I know it is your prayers, and I feel safe. God bless you all!
I am almost tempted to paste and send you a collage of your love and support for it truly is breathtaking. Even in the midst of your own lives, you have reached mine. I pray that as you all take in your own trials and tribulations, a blanket of God's blessings fall upon you and remind you always of the gratitude in my heart. For I cannot even begin to explain the surrealness of this touch of peace. I can breathe.
Let me tell you what your prayers and your tears have done...
Isabel is stable and miraculously, she slept through the night! She is filling her diapers and dehydration is no longer a concern. Her heart rate has dropped down to normal and her electolytes are back to normal as well. We tried to feed her today, but she threw it all up...so we will try again tomorrow.
We are fighting for our concerns to be heard, amidst them is the fear of medicating Isabel rather than addressing the issue. Her body is rejecting the simplest formula out there, what does this mean? We have left a message with Dr.Nielson who, as some of you know, is a Homeopathe who has made significant changes in peoples' lives. We hope to have a voice through her that will look at alternatives to Isabel's intolerance rather than schedule an operation for a fundaplacation (an invasive procedure where they tighten the base of the aesophagus (sp?) to prevent reflux).
Isabel is a fighter. She always has been. She would not be here today if she wasn't. She looked at me today with such appreciation, and I know her little spirit can conquer this. We will figure this out and we will let her be free. No meds, no operations, no nothing that God didn't intend to have in her! We pray that it is His Will that she thrive in this manner.
Victoria is the twelve year old girl in the bed next to Isabel. She has graciously taken on the role of honorary big sister and is quite protective of our Isabel. It has broken my heart to hear of her story and how she has been in the hospital for most of her life. Her kidneys are failing and she is on morphine for the pain. I ask that you include her in your prayers for I spoke with her and loved her and nearly took her on my lap to hold her. Her eyes are old and her body looks worn. God bless Victoria and the journey of her story.
All in all, the house is quiet yet again tonight, but my heart is peaceful knowing that our Isabel sleeps with her little clown next to her and her "Little Bear" videos in the VCR ready when she is... She will not be coming home until she can keep food in her, so let us pray for her clever little body, and for the right questions to lead us to the right answers.
Thank you for the sound of angels that surround me. I know it is your prayers, and I feel safe. God bless you all!
Wednesday, 5 December 2001
Desperate for prayers
My beloved family and friends,
It is with a heavy heart and circles under my eyes that I write to you. Tonight has been a long night and only now have we come home to a quiet house. A house much too quiet for me to bear.
Isabel was brought into Children's Emergency today. I'd been feeling concerned about her increasing intolerance for her feedings and the growing irritability around it. The last few days, we've not managed to keep anything in her. I have felt frustrated, angry, and so incredibly afraid. So, off to the pediatrician we went...
James met me and the girls at the Dr.'s office at 5:00pm because I had to work at 6:15 and would need to be dropped off immediately after the appointment. However, plans changed when the doctor said the following: "My professional and medical advice is that Isabel is seriously dehydrated and needs immediate medical intervention through IV. Now, it would also be alright if you chose not to have medical intervention. Do you understand me? No more needles, no more drugs. But know that she might not make it til morning without an IV. It is your choice."
Well folks, there is nothing in life to prepare any mother or father with the decision of letting your child die or do everything in your power to keep them here.
I looked at her. She'd been crying for nearly forty eight hours straight with few naps in between. But she was here with me. She was still here and she was still my little Isabel and I don't care about the sleepless nights and the crying spells of just being tired of it all! I don't care about the permanent stains in the carpet from her throwing up her feedings all the time. I don't care about the pains in my back from carrying her around! These are nothing and mean nothing as long as I still have Isabel.
To look at her and imagine her gone was too unbearable and the tears wouldn't stop. My baby! I may have had my moments of wishing it could all just end, but my God, when presented with the actual scenario, it is the last thing you can bear to think of. So, without delay, we brought her to emergency.
Her heart was beating very rapidly. They took blood, inserted an IV, took a urine sample and finally after four hours of questions and tests, they brought her up to a room and let her sleep.
So my friends, my family, I need you now and the glorious support of prayer. For my little Isabel is weak and my heart breaks sitting here while she sleeps in a quiet room on the fifth floor of Children's hospital. But I will think of her little face and the moonlight shining down on her and hope that the moon will sing her lullabies while I am away. And knowing that your prayers will blanket her and protect her, will keep me strong and grateful.
She will be there for at least forty eight hours. So let us count the minutes until this house is loud with Isabel noises, whether pleasant or annoying! Because at least it will mean she is here. Thank you and God bless you all for being my strength. Our world is so blessed for having your support and never does a day go by where I do not give thanks for it.
And may the moon shine down on you as I send this all to you. Good night.
P.S. I just want to give thanks to Linda and Moe for having taken care of our worried Melina during this unexpected time. She was scared and sad, but Grandma's love kept her safe. Thank you so much, Linda and Moe. Thank you for loving our special Melina!
It is with a heavy heart and circles under my eyes that I write to you. Tonight has been a long night and only now have we come home to a quiet house. A house much too quiet for me to bear.
Isabel was brought into Children's Emergency today. I'd been feeling concerned about her increasing intolerance for her feedings and the growing irritability around it. The last few days, we've not managed to keep anything in her. I have felt frustrated, angry, and so incredibly afraid. So, off to the pediatrician we went...
James met me and the girls at the Dr.'s office at 5:00pm because I had to work at 6:15 and would need to be dropped off immediately after the appointment. However, plans changed when the doctor said the following: "My professional and medical advice is that Isabel is seriously dehydrated and needs immediate medical intervention through IV. Now, it would also be alright if you chose not to have medical intervention. Do you understand me? No more needles, no more drugs. But know that she might not make it til morning without an IV. It is your choice."
Well folks, there is nothing in life to prepare any mother or father with the decision of letting your child die or do everything in your power to keep them here.
I looked at her. She'd been crying for nearly forty eight hours straight with few naps in between. But she was here with me. She was still here and she was still my little Isabel and I don't care about the sleepless nights and the crying spells of just being tired of it all! I don't care about the permanent stains in the carpet from her throwing up her feedings all the time. I don't care about the pains in my back from carrying her around! These are nothing and mean nothing as long as I still have Isabel.
To look at her and imagine her gone was too unbearable and the tears wouldn't stop. My baby! I may have had my moments of wishing it could all just end, but my God, when presented with the actual scenario, it is the last thing you can bear to think of. So, without delay, we brought her to emergency.
Her heart was beating very rapidly. They took blood, inserted an IV, took a urine sample and finally after four hours of questions and tests, they brought her up to a room and let her sleep.
So my friends, my family, I need you now and the glorious support of prayer. For my little Isabel is weak and my heart breaks sitting here while she sleeps in a quiet room on the fifth floor of Children's hospital. But I will think of her little face and the moonlight shining down on her and hope that the moon will sing her lullabies while I am away. And knowing that your prayers will blanket her and protect her, will keep me strong and grateful.
She will be there for at least forty eight hours. So let us count the minutes until this house is loud with Isabel noises, whether pleasant or annoying! Because at least it will mean she is here. Thank you and God bless you all for being my strength. Our world is so blessed for having your support and never does a day go by where I do not give thanks for it.
And may the moon shine down on you as I send this all to you. Good night.
P.S. I just want to give thanks to Linda and Moe for having taken care of our worried Melina during this unexpected time. She was scared and sad, but Grandma's love kept her safe. Thank you so much, Linda and Moe. Thank you for loving our special Melina!
Monday, 15 October 2001
Dream Catcher
Melina said the sweetest thing the other night, and I wanted to share it with you...
It was quite late at night and she came out of her bedroom for the tenth or eleventh time. Now at this point, I was rather frustrated because it was now eleven thirty at night. But before I could say anything, she looked at me and said,
"I've tried and tried to go to sleep, but I just can't seem to catch a dream."
And immediately, my heart warmed to her for having understood my language. And so I tucked her in bed...again...and blew her a kiss. I told her the kiss would fly around the room until it found the prettiest dream, but that she had to make sure to catch it when it found the dream for her. She smiled excitedly and watched the air.
And in that moment, I saw a little me. And a tear filled my eye as I shut the door, for I finally understood why I am often so hard on her. Because she is just like me.
It was quite late at night and she came out of her bedroom for the tenth or eleventh time. Now at this point, I was rather frustrated because it was now eleven thirty at night. But before I could say anything, she looked at me and said,
"I've tried and tried to go to sleep, but I just can't seem to catch a dream."
And immediately, my heart warmed to her for having understood my language. And so I tucked her in bed...again...and blew her a kiss. I told her the kiss would fly around the room until it found the prettiest dream, but that she had to make sure to catch it when it found the dream for her. She smiled excitedly and watched the air.
And in that moment, I saw a little me. And a tear filled my eye as I shut the door, for I finally understood why I am often so hard on her. Because she is just like me.
Wednesday, 15 December 1999
Christmas Letter 1999
Dear Family and Friends,
Upon receiving so many wonderful Christmas letters, I figured it was high time that I attempt at writing one myself. For starters, I hope that this letter finds you all well and excited about the new millennium. In my opinion, this year has come and gone far too quickly. I almost feel as though I’ve missed something. But here we are finding ourselves frantic about Christmas presents and New Year’s resolutions. Best of all, it is that time of year in which we celebrate the miracle of Christ from two thousand years ago.
There have been many things to be thankful for this past year. So many, in fact, that it feels as though a millennium has already come and gone. We started the year off with James’ and my wedding on January 2nd. Things have been wonderfully tough as we find ourselves growing together as individuals. These past months have certainly put us to the test but I feel confident in our strength and friendship. Even with pregnancy raging hormones, we’ve managed to work out quite a few things sometimes even with a laugh.
Things remained rather calm until March. I received a call from my doctor stating that my alpha-fetoprotein level (a protein produced by the baby) was a little high. A fetal assessment would help confirm any problems. To my surprise, the baby was showing signs of distress. She was measuring a month smaller in size and did not appear to be getting enough oxygen. A strict monitoring schedule was established and I was left feeling dumbfounded. Needless to say, a range of emotions flooded me ranging from anger towards my body for turning on my child, to fear that things might go wrong.
May was the hardest month of my life. My Grandma Kay was brought to Health Sciences Centre on Mother’s day. She had very little time left to live. Family pooled together and I experienced a circle of love and strength as I have never experienced before. Differences were put aside, forgiveness filled hearts, laughter and tears were shared as we all stood by and loved Grandma as she was dying. For a whole week there was family at her side. That Friday, my second fetal assessment showed that my baby was dying. An emergency C-section would be performed on the Monday morning of May 17th. Two hours after hearing that news, Grandma passed away and amidst my fear, I suddenly felt that she would protect my baby.
The morning of May 17th had arrived. I trembled with fear for my baby who had only six months to prepare in the womb. Was that going to be enough? James was at my side in the O.R. After half an hour, I heard the doctors exclaim “my God, that’s small!” But when they lifted my baby from me and I heard three little cries as they exclaimed, “it’s a girl”, I turned to James and said, “she’s going to make it. Little Isabel Faith is going to make it.” Grandma was watching over her indeed.
Isabel (which I found out later means ‘chosen by God’) weighed only 1lb 61/2 oz, which is only 648 grams for all you metrics out there. She was twelve inches long. This would be the beginning of a very long road with which all the details would consume too much of your time. In brief, she amazed the doctors and nurses. She survived pneumonia, chemotherapy treatment never before performed on a preemie, blood transfusions, platelet transfusions, respirators, eye laser treatment for retinopathy, and countless other feats. Yet through it all, she remained ever so strong. After three months of hospitalization, she came home to her family at 3 lbs 6 oz, the smallest baby ever to be discharged in the history of Children’s Hospital. No doubt it is thanks to all of your prayers and support that Isabel has dodged so many of the odds that were stacked up against her. Thank you for playing a part in the miracle.
Melina has been incredible through all of this. She has been through much and has been very expressive about her feelings and questions. I don’t think I could have asked for a more incredible four year old. Her compassion and love for Isabel is beautiful to watch. Isabel of course adores Melina and gives herself whiplash trying to follow her every move. On top of becoming a big sister, Melina has also started attending Montessori Preschool. She has made new friends and enjoys her time away from home. (You think only parents need breaks? Not according to Melina). She gets to run, bounce, jump, slide, glide, ride, sing and play while learning basic Math, Arts, Sciences, and Logic. The learning is self-directed which all those of you who know Melina know that this is the only way she would have it. Besides being a brilliant pre-scholar, she loves to dance, play at the park, make her parents laugh and most of all to colour. Her artwork is expressive and exquisite. She loves to draw people, houses, rainbows, flowers, etc… Her attention to detail is surprising. Even staff from Montessori School has suggested an art program. In the meantime, she continues to express herself on paper and teaching her other little playmates how to expand their fine arts abilities. We are so proud of our big girl.
As of June 2nd, James has been hired by the Angus Reid Group as their help desk technician in the I.S.T department. My computer genius has worked hard to get where he is at and continues to study for further exams to acquire his certificates as Certified Netware Engineer (C.N.E), Certified Netware Assistant (C.N.A) and finally Microsoft Certified System Engineer (M.C.S.E). He has also been perfecting his art as a computer games addict. (If only you could hear the sarcasm in my voice). Needless to say, I prefer the first goals to the second; however, I must admit his determination for the later is impressive. If only he could attack his studies as enthusiastically… Despite the rocky road of fatherhood these past few months, nothing has stopped him from succeeding. I am proud of his hard work and accomplishments.
As for me, I have had my hands full with visits to the hospital, doctor's appointments, dirty diapers and monsters in the closets. Since things have calmed down, I don’t think I could be happier. I adore my two girls and love nothing more than smothering them with hugs and kisses. Pride overwhelms me as I take on the luckiest role as their mother. Sometimes I feel as though someone has handed me the moon and I am somehow expected to guide it as best I can. Melina once asked me if I was her teacher and upon reflection I realized that I have learned more about life from these two little people than I have in a lifetime. So I ask myself who truly is the teacher? Socrates hit it right on when he said that, “Children are the greatest philosophers of life.” Blessed am I to have my girls.
And so concludes the main events of this past year. In only 365 days, we have learned more about love, forgiveness, striving, believing and trusting in God’s plan. What does the future have in store for us? I have no idea. But I await patiently knowing that whatever comes our way, we shall work together in embracing our lessons and living our dreams. Peace and Love to you all this Christmas and may the New Year bless you with the gifts of life…and computers that still work.
Much love: The Watson-Burgess Family
Upon receiving so many wonderful Christmas letters, I figured it was high time that I attempt at writing one myself. For starters, I hope that this letter finds you all well and excited about the new millennium. In my opinion, this year has come and gone far too quickly. I almost feel as though I’ve missed something. But here we are finding ourselves frantic about Christmas presents and New Year’s resolutions. Best of all, it is that time of year in which we celebrate the miracle of Christ from two thousand years ago.
There have been many things to be thankful for this past year. So many, in fact, that it feels as though a millennium has already come and gone. We started the year off with James’ and my wedding on January 2nd. Things have been wonderfully tough as we find ourselves growing together as individuals. These past months have certainly put us to the test but I feel confident in our strength and friendship. Even with pregnancy raging hormones, we’ve managed to work out quite a few things sometimes even with a laugh.
Things remained rather calm until March. I received a call from my doctor stating that my alpha-fetoprotein level (a protein produced by the baby) was a little high. A fetal assessment would help confirm any problems. To my surprise, the baby was showing signs of distress. She was measuring a month smaller in size and did not appear to be getting enough oxygen. A strict monitoring schedule was established and I was left feeling dumbfounded. Needless to say, a range of emotions flooded me ranging from anger towards my body for turning on my child, to fear that things might go wrong.
May was the hardest month of my life. My Grandma Kay was brought to Health Sciences Centre on Mother’s day. She had very little time left to live. Family pooled together and I experienced a circle of love and strength as I have never experienced before. Differences were put aside, forgiveness filled hearts, laughter and tears were shared as we all stood by and loved Grandma as she was dying. For a whole week there was family at her side. That Friday, my second fetal assessment showed that my baby was dying. An emergency C-section would be performed on the Monday morning of May 17th. Two hours after hearing that news, Grandma passed away and amidst my fear, I suddenly felt that she would protect my baby.
The morning of May 17th had arrived. I trembled with fear for my baby who had only six months to prepare in the womb. Was that going to be enough? James was at my side in the O.R. After half an hour, I heard the doctors exclaim “my God, that’s small!” But when they lifted my baby from me and I heard three little cries as they exclaimed, “it’s a girl”, I turned to James and said, “she’s going to make it. Little Isabel Faith is going to make it.” Grandma was watching over her indeed.
Isabel (which I found out later means ‘chosen by God’) weighed only 1lb 61/2 oz, which is only 648 grams for all you metrics out there. She was twelve inches long. This would be the beginning of a very long road with which all the details would consume too much of your time. In brief, she amazed the doctors and nurses. She survived pneumonia, chemotherapy treatment never before performed on a preemie, blood transfusions, platelet transfusions, respirators, eye laser treatment for retinopathy, and countless other feats. Yet through it all, she remained ever so strong. After three months of hospitalization, she came home to her family at 3 lbs 6 oz, the smallest baby ever to be discharged in the history of Children’s Hospital. No doubt it is thanks to all of your prayers and support that Isabel has dodged so many of the odds that were stacked up against her. Thank you for playing a part in the miracle.
Melina has been incredible through all of this. She has been through much and has been very expressive about her feelings and questions. I don’t think I could have asked for a more incredible four year old. Her compassion and love for Isabel is beautiful to watch. Isabel of course adores Melina and gives herself whiplash trying to follow her every move. On top of becoming a big sister, Melina has also started attending Montessori Preschool. She has made new friends and enjoys her time away from home. (You think only parents need breaks? Not according to Melina). She gets to run, bounce, jump, slide, glide, ride, sing and play while learning basic Math, Arts, Sciences, and Logic. The learning is self-directed which all those of you who know Melina know that this is the only way she would have it. Besides being a brilliant pre-scholar, she loves to dance, play at the park, make her parents laugh and most of all to colour. Her artwork is expressive and exquisite. She loves to draw people, houses, rainbows, flowers, etc… Her attention to detail is surprising. Even staff from Montessori School has suggested an art program. In the meantime, she continues to express herself on paper and teaching her other little playmates how to expand their fine arts abilities. We are so proud of our big girl.
As of June 2nd, James has been hired by the Angus Reid Group as their help desk technician in the I.S.T department. My computer genius has worked hard to get where he is at and continues to study for further exams to acquire his certificates as Certified Netware Engineer (C.N.E), Certified Netware Assistant (C.N.A) and finally Microsoft Certified System Engineer (M.C.S.E). He has also been perfecting his art as a computer games addict. (If only you could hear the sarcasm in my voice). Needless to say, I prefer the first goals to the second; however, I must admit his determination for the later is impressive. If only he could attack his studies as enthusiastically… Despite the rocky road of fatherhood these past few months, nothing has stopped him from succeeding. I am proud of his hard work and accomplishments.
As for me, I have had my hands full with visits to the hospital, doctor's appointments, dirty diapers and monsters in the closets. Since things have calmed down, I don’t think I could be happier. I adore my two girls and love nothing more than smothering them with hugs and kisses. Pride overwhelms me as I take on the luckiest role as their mother. Sometimes I feel as though someone has handed me the moon and I am somehow expected to guide it as best I can. Melina once asked me if I was her teacher and upon reflection I realized that I have learned more about life from these two little people than I have in a lifetime. So I ask myself who truly is the teacher? Socrates hit it right on when he said that, “Children are the greatest philosophers of life.” Blessed am I to have my girls.
And so concludes the main events of this past year. In only 365 days, we have learned more about love, forgiveness, striving, believing and trusting in God’s plan. What does the future have in store for us? I have no idea. But I await patiently knowing that whatever comes our way, we shall work together in embracing our lessons and living our dreams. Peace and Love to you all this Christmas and may the New Year bless you with the gifts of life…and computers that still work.
Much love: The Watson-Burgess Family
Subscribe to:
Posts (Atom)