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Sadness

Sadness
By: Emilie Schultz

Sadness
It’s closing in fast.
Too fast.
I’m panicking, trapped.
Walls are all around me.
Waves of sadness are drowning me.
I don’t know what to do.
I can’t escape.
I just lost someone I love.
I will never be happy again.
I’m cold.
Nothing can warm me up.
I’m expected to move on like nothing happened.
I’m afraid if I do there will be more pain.
Slowly, timidly, I open up.
I try again.
The pain of death will always be there.
But the birth of someone new brings the best cure.
A cure that only God could have made.
Joy.

This poem was written by our daughter Emilie after losing Matthew and Simon and then bringing Daniel home. She touches on so many truths in such a few amount of words. I can feel her pain as I read this. I can feel her love too. These boys have truly touched our family and for that I am eternally grateful.

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July 16, 2013 at 8:35 pm 2 comments

I’m Still Here

The tears fall savagely from my face as they lower his small coffin into the ground. Then like a whisper in the wind I hear, “I’m still here”. I look around me, but the only people there are my family and they are crying as well. I re-focus on the tragedy in front of me and hug my mom.
Jump forward a few weeks and my eyes are welling over as I prepare to press the razor to my skin and cut the pain away. I brace myself until I hear. “Please stop. I’m here. I’m still here.” So I stop. I throw away the razor and scream and cry. “PLEASE! PLEASE TALK TO ME AGAIN! PLEASE COME BACK!” I bawl at the ceiling. But of course he can’t hear me. Of course he doesn’t answer me.
Skip ahead and the tears are falling from my face again. This time from relief. I’m graduating high school. I receive my awards then I’m congratulated and hugged by my family. For one split moment I think, “If only he was here to celebrate with me. If only he could be with me today.” And like magic I hear him, “I’m still here. And I’m proud of you.” I smile. To myself and to him.
Fast-forward a few years and I’m getting married. I’m crying tears of happiness now. My husband-to-be says, “I do.” When it’s my turn I say, “I do”. I hear “you may now kiss the bride”. My newly-wed-husband leans in and kisses me gently. As we walk down the aisle I think, “He should be here watching me. He should be celebrating with me.” After all the pictures and all the hugs my husband and I start walking to our car. I’m just climbing in when I hear, “Don’t worry. I’m still here… And I’m celebrating.”
Move ahead, and I’m holding my newborn baby boy in my arms. He looks up at me and I notice that both my boys have the same eyes. My boy in heaven and my boy on earth. My two beautiful boys. The tears slip silently down my face. My husband leans over me and whispers, “he’s beautiful.” “Yeah. He really is.” I reply just as quietly. “Have you thought of a name yet?” he asks me as I hand him our baby. He walks over to the rocking chair and slowly puts our baby to sleep. “Yeah.” I say my voice barely a murmur. “Matthew.” As I too fall asleep I hear, “Thank you, thank you, thank you. I’m still here.” And, “I love you.”
Continue on and baby Matthew’s all grown-up. My husband and I have grown elderly. Matthew’s gotten married and has a few kids of his own. I’m a grandma now. “That means he’d be a great uncle.” I think as I sit and crochet a hat for my oldest grandchild. “Hey, don’t worry.” I hear briefly. “I’m still here.” The tears roll, once again. “Will this ever end? Will the pain ever go away?” I think as I wipe my wet eyes. “Didn’t you hear me? I’m still here. I’m right here with you. Forever and always.” “Thank you.” I say it out loud, but as a whisper. As if I might scare him away if I speak any louder. But, he’s gone.
Carry on, and I’m well into my 80’s. I’m in a nursing home now, and I rarely get out of bed. I’ve been here for 5 months and I don’t feel I have much time left. As I fall asleep one night, I hear him speak to me again, “Don’t be scared. I’m still here. I’m right here with you, and now we’re going to be together forever. You are coming to my house.” I look down at myself and I’m a little girl again. Matthew and I run and play and dance. I hold him close and whisper. “I missed you so much while you were gone.” I ruffle his hair and hold him closer. “When I was gone? I was never gone. Well, not completely. Didn’t you hear me? When I told you I was still there. When I would tell you I love you?” He looks at me in confusion. “I never left you. I was with you every step of the way, because I love you so much. I would never leave you because you are my big sister and family sticks together.”
Then he stands up, grabs my hand and we walk off together, smiling, knowing we’ll never be apart again.

This story was written by our daughter Michelle when she was 15. It has been published in the book Gems of British Columbia. I must say we are very proud of her. And I am so moved that this little guy, our precious Matthew, has touched her life so much too.

July 16, 2013 at 8:30 pm Leave a comment

Happy 4th Birthday

cakeAnother year is here. You would be four years old. I can’t believe it’s been this long and yet it still only feels like yesterday. It has been building up for days now and my anxiety and sadness is at it’s peak. My journey in grief is still only in it’s early stages. But I know your day will be nice since we will be focusing on your day as a holiday from school to be filled with thoughts of you and celebration. We will be missing daddy though as he is off in Washington, DC, fighting for your cause. It will be the first that we are not together today and I hope it will be the only time. I was reluctant to let him go, but mostly due to selfish reasons. I did not want to have to wake up and face today with the other kids alone on my hardest day of the year. I know it will be hard on daddy too, since he is so far away and alone. We don’t have each other to lean on to make it through the day. Luckily daddy’s day will be filled with you and our battle to save lives. He is lucky. He gets to be on the frontline for you. I get jealous sometimes since I have to be in the background supporting him and taking care of our family. I wish I could be up there with him talking about wonderful you and helping to prevent more deaths. But I am slowly accepting the fact that my place is taking care of your siblings and encouraging daddy to fight the good fight. Without me backing him up, could he do this?

After four years, are we any further ahead? Some days I think not. Daniel wound up in the hospital again and the pediatrician offerred him medication to help stop his vomiting so he could rehydrate. She had no plans on giving him an IV. She decided on a drug. And even though we brought up drug risks, she went and got it anyway. She could have gone quickly to the computer and googled the drug to see that it is contraindicated in children under 3 and to not give it if the patient has electrolyte imbalance such as in dehydration. Or the other warnings Health Canada has put on it. Instead she came back and gave it to him. A few people have told us we had the right to refuse the drug. And yes we did. But how do you refuse a drug that she took out of it’s package as she came to our bed and then just shoved it in his mouth? Coming home and researching the drug, we would have definitely told her no. The study on it had shown that it is no better than placebo in children and in fact caused the vomiting children in the study to get diarreah. So I have to ask myself, how do these things get on the market? And then give it to my child under 2 with a heart defect? And the answer we get from the hospital? Those warnings have to be put there but don’t really need to be followed. All our work and this happens again? At least at the end, we were told that the hospital now monitors all newborn for their first 48 hours if they were exposed to antidepressants. That sounds like progress, only we didn’t see any proof. We’ve been jerked around so much, I am reluctant to believe them. And I question them if they even ask the women coming in if they are on them. I only pray that what they said is true and they are in fact doing this. Babies can be saved and maybe they’ll begin to notice how these exposed babies are reacting. That is a right step in the right direction. But I am still waiting for our case to be taken care of. I no longer want your death swept under the rug and pretend you never happened.

So again, I face your day with sadness. I will get through it. I will enjoy it. We have so much planned today that it should be quite happy. The kids have been so excited for today. They picked your cake and balloons and plan to spend the afternoon decorating the kitchen and your wish lanterns. It will be so nice to send those off this year and I’m optimistic since it’s much warmer compared to last year. Will you be watching? WIll you be waiting for your balloons and lanterns? I wish I could begin to imagine what you would look like now and sound like. I dream of that often. As you watch us celebrate from heaven, please say a little prayer for daddy so he doesn’t feel so alone and for your siblings so they always remember you. Happy BIrthday little man. Mommy loves you so much.

February 21, 2013 at 7:23 am 2 comments

Merry Christmas little guys.

boysAnother year without you. That makes it 4 now. It is still difficult. Knowing that you won’t be here in the frenzied morning ripping open your presents like the other kids. But you are far from forgotten. You two are stil included in our Christmas. You two have your stockings, but in a special place. We have ours and the childrens on our mantel, but you boys have yours held by an angel. As much as I wish they were hung with the others, I just can’t bring myself to have two empty stockings looking sad intermingled with the other full stockings. Your angel is dutifully keeping you two prominent and we look at her often as she stands guard with those socks. She even moves around the room, and occassionally dances around the room as Daniel likes to carry her around. I like to pretend he is playing with the two of you. I guess whatever I can make up to make myself feel better is never too bad a thing. So to my two angels, Matthew and Simon; Merry Christmas! We love you so much.

December 25, 2012 at 7:11 am Leave a comment

Photo Op

We went and got ourselves family portraits. We usually just set the camera on timer and do it ourselves. But we saw some work from a young lady who takes photos for a hobby. She charges very well and the work I saw is very good. We had a great day posing by the river although it was quite cold. Being November, it was minus 5 degrees Celsius. So our photos were taken quite quickly. Amery asked Matthew for some sunshine and he delivered. I wish he would have also asked to be a freak warm day, but it was a lovely day anyway. This young lady was very patient with our brood and especially our very busy and rambunctious boy. My favorite thing about her was her willingness to include our angel boys. After I discussed our loss of Matthew and Simon, she said it was important to include them as well since they are our family too. She made time to take photos of Amery and I with our teardrop ornament with two feathers in it, one for each boy and do something special. Getting the pictures done, I was moved by her kindness. She is young, but very empathic. I received the discs with the pictures and when I saw the photos, I was moved to tears. Here we have a photo to add to our wall of our angel boys.

It only takes a moment to make grieving parents feel some joy. And she took a few moments. We let the kids go to the van with daddy to warm up and she sat in the cold with me and listen to me talk about our boys. She said she was happy to find a way to incorporate them in our photos and was sorry we couldn’t have them in the photo with us. She said she would do something with the pictures and try to make them special. She also said that our boys are always going to be a part of our family and to not worry about talking about them in front of her. It was an amazing gift from a young lady I just met. Whenever I see her, I always smile. She goes out of her way to greet me and my children. Whatever her parents did while she was growing up, they did a good job. I’m sure they are very proud of her. I hope she continues with her passion and to touch other people. Who knows, maybe she’ll take the information I gave her on looking into the Now I Lay Me Down To Sleep program and help other grieving families. Her kindness proves she would be really great at it. If only there were more adults as mature as this young lady.

November 26, 2012 at 6:15 am Leave a comment

Do we not learn from history?

I know it’s been some time since I’ve written on my blog. Not because I’ve given up my fight for my boys or that I’ve ‘moved on’. I’m just a homeschooling mom of 7 and I don’t have a lot of time to myself. But I do think about it quite often. I’ve been moved to blog before, but have had sometimes received negative comments from so-called “knowledgeable” people who just fling hurt at others that some days it just doesn’t seem worth it. Why cause myself more pain when I don’t even know if I am even helping anyone?

 

But I’ve been thinking lately and reading. I get to read while I breastfeed my rainbow baby. It’s not long moments, but they are mine and I get to read the information books that my 10 year old loves to read. Short and factual and sometimes fascinating. Well, his latest book was about technology. And I know that technology can be great. So much has happened as a culture in such a short time due to technology. We have so much more and are able to do more, experience more, and help more. Being in a country like Canada where we benefit so much from technology. The amazing gadgets and the ease with which we travel to different parts of the world; we are a country with so much. Knowledge is definitely up there. Because of knowledge, we now have better health and longer lives. We can cure some diseases with ease that killed many in the not too distant past. Because of technology, surgeons in 8 hours could fix my rainbow’s heart. A condition that was a death sentence not many years ago. We have come so far. Amazing!

 

But then again, people are dying when they shouldn’t be. Our culture worships the almighty dollar, so if there is something out there that can make some money, market the hell out of it. Honesty and integrity have nothing to do with it. If you can convince enough people of your product’s efficacy, true or not, then you have it made.

 

Have we really changed much throughout history, even with more knowledge and technology? Before the 1900’s, milk was not pasteurized. And that is only because society didn’t have the knowledge of the dangers of germs. Milk came from a cow to your table. Some places if you weren’t lucky enough to live on a farm, but lucky enough to live in a city where a farm was near, you had farmers walk around town with their cow and ask if you’d like milk. If you did, you gave him a pitcher and watched him milk the cow right before your eyes. But soon that wasn’t practical. Cows got milked and then that milk was delivered. And not in those cute milk jugs. Cows you never saw got milked and open buckets were brought around while an in-between or someone like a used car salesman scooped out of the bucket with his ladle into your jar. Customers had no idea on the germs that milk carried. Swill fed cows. Cows that were tied to pens their whole lives, fed only distillery swill. Pens that were never cleaned. These cattle were milked until the day they died. Some didn’t live more than a year or two and died of horrible illnesses that were passed to the customers. The clients that died the most were children under the age of 5, since they were more susceptible to diseases. When in between 1843 and 1856,  when the mortality rates of children under 5 tripled, the same rate as the growth of Swill Milk farms, some people took notice. An article in 1858 in Frank Leslie’s Illustrated Newspaper published a series of articles describing in detail the swill dairies. Two years later, some states started disallowing the sales of swill milk.

 

Improvements were made for the new century. Bottles with sealable lids were invented. But only for keeping anything dirty out after cows were milked. Also, fines were given to salesmen who failed the lactometer test. This stopped the addition of things like flour, salt, chalk, plaster of Paris or anything that made sick milk look “healthy”. And because of the advancements in the understanding of bacteria, and its role in causing diseases,  by the 1880’s and 1890’s, scientists were understanding that dirty infected cows could pass diseases to humans. Pasteurization was already invented in the 1860’s. But because Louis Pasteur’s ideas were considered too revolutionary, it didn’t arrive in the US until the 1880’s. And it still took more than 30 years to finally catch on!

 

A philanthropist by the name of Nathan Straus worked hard at changing things. He had been reading Pasteur’s work and theoretical benefits of pasteurization. In 1893 he started setting up milk-processing stations and teaching mothers about hygiene. He decided to do testing to show why pasteurization was important. He started providing milk to an orphanage that had seen death rates as high as 42% from TB and other milk-borne diseases. Since it was located on an island, their milk was provided by a single herd of cows. So it was easy to control the milk the orphans drank. Within a year after pasteurizing their milk, the mortality rate dropped to 28% and continued to drop in the years that followed. Although he was adding milk stations and the death rates were dropping, the dairy industry was staying away from it. They said pasteurization cost too much and blocked efforts to require it by law. Even the public was resisting it.

 

Straus was instrumental in getting New York to create the post of inspector of dairy farms. One of the first cities in the nation to inspect the quality of milk at the source. He tried to get it to happen in all the cities of New York. But many milk distributors, doctors and even the city’s Health Departments opposed him. Their argument? My favorite quote right here people. “The health benefits of ‘clean raw milk’ outweigh the risks.”

 

Aha! This has happened before. When money is involved, it doesn’t matter on the safety of the public. What costs less to manufacture and how can we make the most money. Who cares if people die because of it? It’s all in a day’s work. So some people die? There is money to be made. Not until 1911 did the National Commission of Milk Standards finally come out and advise that pasteurization become compulsory. But it still didn’t catch. Sounds like those FDA warnings that get ignored. In 1913,  when a typhoid fever epidemic struck New York claiming thousands of victims, with proof that it was carried by milk and could be killed by pasteurization, then and only then did the city finally do something.

 

It took 57 years for things to finally change. In our day and age with so much information and knowledge and technology, how long will it take for the warnings to be taken seriously? How many people will have to die? Are they waiting for another epidemic before they do something? Look around. It’s happening. Babies are dying or born with long term problems. Patients are killing themselves or others. There is so much death surrounding these medications. There are warnings and studies and tests. But they are being ignored. There are so many great fighters out there. If we all keep fighting, maybe one day, it will be banished too and again we can be safe. If we are to look at history and learn from it, then now is the time. History is repeating itself and it’s at the risk of our generation.

October 2, 2012 at 5:23 am Leave a comment

WIll It Matter?

Will it ever end? The damage these drugs leave in their wake seems to pop up everywhere. I see it on the news and with new people I meet that tell me how it has affected them. I see it with myself and my boys. For me it’s still, 3 years after I got off of them, sleeping. The jerks or muscle crawling. The dreams. For my boys, it’s sleep walking and night terrors.
And Jacob. My poor Jacob. It has affected him the worst of my living boys. He has learning disablilities and dyslexia. His atonomic nervous system has been affected. The specialists at BC Children’s Hospital agree it’s his autonomic system, but unfortuately they can’t pinpoint exactly as they are not sure how to look since it involves the brain. They could probably tell us through an exam of his brain at autopsy. I for one, don’t want that option at all. His fight or flight is at extremes and we are never quite certain just how he will react. We have to be paying attention at all times so he doesn’t hurt himself or others. It’s quite a job to calm him down as he doesn’t have the capacity to calm himself. He just lives un utter fear or fight for his life, sometimes even over little things. It’s so hard as his mother to watch him like this because he wants to control it and he can’t. I can see the fear and begging in his eyes to help him make it stop. And then afterwards, if he can remember, he feels downright awful. Not the life I anticipated for my little guy.
And his digestive system. That is also something that seretonin affects. And my poor boys digestive system is an issue all its own. He cannot feel his bowels. That means he doesn’t know if he has to use the bathroom. And when he sits to try, doesn’t know how to use the muscles it takes to push since he can’t feel the contractions. Oh, he pees just fine and even stays dry at night for some time. But he can’t tell if he needs to have a movement. The doctors at BCCH have given us a regiment of PEG and practice. Give him the PEG to keep his stool soft and go on the potty after mealtimes to get in the habit of using the toilet. They anticipated that with a strict regiment, his bowel would shrink and he would learn to feel again and successfully use the toilet in a year. Here we are a year and a half later of the strict regime and still no where closer. Actually, I think he’s worse, as he hasn’t pooped in a week. Something so simple that we take for granted and probably never think about it unless it’s a problem, has been a problem for his whole life. I can’t help but hurt for my boy over a natural, automatic system, that he doesn’t have. So unfair.
So off to the hospital in Kamloops he goes. They are going to put a tube in his nose, down to his intestines and pump him full of fluids and PEG to get the poop out. His colon should only be 3cm wide and he’s at 7cm at last XRay. The doctors hope, is that they clean him out at the hospital so that his bowels are empty, and shrunk back down to 3cm. Then we continue our regiment, that shrunk back to normal size, his body will eventually learn to ‘feel’ when something enters the bowel and he will go on his own. After 7 years of this, I am not particularily optimistic. I have asked for help for so long and only recieved it after Matthew’s death. I am glad that Matthew left behind some clues to help his big brother. But until we find some medical professionals who actually believe these drugs are bad and could really be the culprit in his issues, we are up said creek without a paddle.
A new mission begins, and begins for Jacob. Finding a way for his body to work properly to some extent and getting the message out that these drugs affect the unborn in different ways. They will have long term damage. Even if they don’t believe that their son or daughters behavoiral label in school could be linked to the exposure they had in the womb. Drug exposure seems to affect impulse control and judgement among other things and at different levels. Of course, if most people look at an older child with behavioral issues who were born addicted to cocaine or meth or crack, they will agree it makes sense that the drugs could cause these things. But not antidepressants. No way. They are safe. They may not even pass through to the baby at all. Even if I show them the chemical makeup and the fact they are very close to cocaine, no way. Cocaine is an illigal drug and is bound to cause damage. Isn’t that why it’s illigal? But antidepressants are a prescription with the doctor certain they are safe so that makes all the difference in the world. And to compound the issues, parents seem to have no problem putting more of that poison into their child’s body such as antidepressants, antipsychotics and/or behavoiral medication such as Ritalin. How does one help change the world so our children are safe? It seems an impossible task. One that I will gladly take on. Even if I only help save one child from any risk, it will be worth it.

May 18, 2012 at 5:02 pm Leave a comment

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  • Is not coping well at all. Loss sucks! 7 years ago
  • is scared to bond with this baby, just in case. 8 years ago
  • Happy 6 months today baby. I love you Matthew. 8 years ago
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