“February Twenty-First”

February twenty-first
My brother should be a year.
His life was cut short.

His life was cut short
by what doctors had said
were perfectly safe.
They were wrong. – Antidepressants
cause great sorrow, and much pain.

-Stephanie Schultz 14 years.
Matthew’s big sister.

Disgusted.

After going through my 5 year old son’s birth record, I am disgusted to learn that they had lied to me then. If they had told me the truth, I would have weaned 5 years ago. Instead, I am told something else and encouraged to continue my antidepressant use. Because of that, Jacob and Andrew are permanently affected, and Matthew and Simon are dead. How can I feel any other way? I was told that Jacob had a lung infection due to swallowing of merconium and why he needed to stay in NICU for 10 days. But his records clearly state that he did not have a lung infection. The tests proved that. Instead, they have written respiratory problems. He had to stay in an oxygen rich incubator and could not keep up his blood oxygen level. To this day, his blood oxygen level does not surpass a saturaation of 94%. It hovers around 89-90%. Normally we should have oxygen levels of 99-100%. Not to mention the fact that he was born after 9 months of being given Effexor and suddenly quit cold turkey. How cruel. The withdrawal alone could have killed him. They did not let me breastfeed him because he couldn’t come out of his incubator without losing conciousness. Had they let me nurse him, he would have withdrawn from the drug slowly. Instead they tortured him through withdrawal for 6 days before giving him the drug again through allowing me to breastfeed. We have read and reread his file over and over. It is nice to see that Effexor was listed under risk factors on his file, but no one took into account that it gave him PPHN. All the notes made by medical staff point to acute withdrawal and PPHN. They caused my son permanent damage and didn’t tell me what was really going on. I would have weaned then.

I am anxious to get my other boys charts to see if Effexor was listed as a risk factor. I am most eager to get Matthew’s file since he died from PPHN. Had they took the Effexor seriously with the fact that Jacob had it then Matthew could have been saved, maybe. Some babies with known PPHN still can die even with intervention. They should have seen the damage and risks and told me to wean. They still encouraged the antidepressant use after Matthew died to deal with the loss! They even wanted to increase my dose!

My other worry now is Andrew’s severe sleep apnea at 3. Cole has an erratic heartbeat. And Jacob’s poor oxygen levels. I think about all these moms who have lost their babies to SIDS and yet will take antidepressants while they try to get pregnant again. How frustrating for me. The info is there. Serotonin is what controls the autonomic nervous system. That is the system that we do not think about or conciously control. Breathing and heartrate are the main ones. Why in a first world country with some of the best medical care in the world, is SIDS on the rise? Why are SIDS rates higher here than in 3rd world countries? I’m not talking infant mortality rates(although our numbers aren’t impressive), I’m talking SIDS. Because North America has the highest rate of women on antidepressants and antianxietey medication. The numbers are there and nobody wants to see them. SIDS rates have risen along with these medication rates rising. They are even linking SIDS to serotonin levels in the brain stem being off. A baby gets their serotonin levels from their mother while in the womb. So if mommy’s serotonin levels are messed up with an SSRI/SNRI then baby’s are changed. These drugs cause prolonged QT syndrome. That’s where the time between the heartbeat is prolonged. So a baby’s heart will rest between beats, and due to prolonged QT doesn’t start up again. Baby is dead. Quickly and quietly with no warning or signs. SIDS. It’s so simple and yet so many women want to take that chance. Disgusting. How can a woman with a baby she wants to protect poison their unborn baby?

So again. If the hospital and doctors had been honest with me. My boys would be healthy and/or alive. Instead, I have to deal with medical problems and dead children. And there is no excuse. The problems that these drugs cause was known back in 2004 when Jacob was born. It was known long before that too. I think how much better it would be to live in the U.K. where most doctors don’t believe in depression being fixed with a pill (it can’t. there is no test or definitive proof that these drugs even work for depression other than the placebo effect) or ADHD (these drugs just make a child stoned and cause heart problems and central nervous system damage like facial tics) These are made up illnesses so drug companies can make lots of money. It is a racket to the tune of tens of billions of dollars a year, selling drugs that don’t work to a country where people don’t want to take the time to work through the real problem and have the instant “fix” that these drugs promise. They don’t have proof they work and long term use of these meds cause heart damage and other problems. Money is more important than health. And we are at risk.

If in Matthew and Simon’s death, they can save one child, it is well worth it.

graphics for moms

Hurting today.

I have been overtaken by a new kind of grief. This grief is compounded with the fact that I just learned that I did not get pregnant this month. I am wondering why this is happening to me. I am facing a disappointment after disappointment. This lack of pregnancy this time is harder than the month before conceiving Simon. I am wanting to be pregnant so bad right now and also filled with fear that another pregnancy could bring me another loss. But this is a loss as well. I am grieving the child that wasn’t even made. My arms are aching to hold another baby. My soul is missing Matthew. I don’t ever want anyone to think I could ever replace him. He is in my heart forever. Matthew will always be my little boy. But I am so filled with a desire for more children but face the fear that maybe there will be no more. I realize I am getting ahead of myself, but I grow impatient. So many beautiful babies around me. We look at these babies, Amery and I, and look at each other with pain. Where is our baby we ask. We want more little ones to share our love and memories of Matthew and Simon to. We look forward to telling them every little detail of their brothers. And although I am hurt I also realize, there was nothing I could have done differently this month. I did not even ovulate. No egg to fertilize. I hope this is not a new problem I will face, but I do not know. I have the comfort in my previous charting knowing that I can still ovulate. We just put so much into this last month. And maybe all that stress had everything to do with it. But I ache to fill these arms. To feed my child from me in the complete bonding of breastfeeding. Will it happen again?

I also think that it will soon be time to plan a birthday party. I’ve thrown many first birthday parties in my past. But a birthday party for my angel baby? Where do I begin? I am bombarded with thoughts of what normally happens. How big the baby is or how they act. The cake and balloons. Squeals of delight and screams of being overwhelmed. Maybe I will still hear these sounds from my other children as we get through his day. I need to make this day special, but if it’s anything like Christmas, I may not be able to get out of bed. All I know right now is how horribly, terribly and overwhelmingly I miss my little boy.

Tiny Angels

Tiny Angels rest your wings
sit with me for awhile.
How I long to hold your hand,
And see your tender smile.
Tiny Angel, look at me,
I want this image clear….
That I will forget your precious face
Is my biggest fear.
Tiny Angel can you tell me,
Why you have gone away?
You weren’t here for very long….
Why is it, you couldn’t stay?
Tiny Angel shook his head,
“These things I do not know….
But I do know that you love me,
And that I love you so”.

Author Unknown

“My First Christmas in Heaven”

I see the countless CHRISTMAS TREES around the world below
with tiny lights like HEAVEN’S STARS reflecting on the snow.

The sight is so SPECTACULAR pleas wipe away that tear
for I am spending CHRISTMAS WITH JESUS CHRIST this year.

I hear the many CHRISTMAS SONGS that people hold so dear
but the SOUND OF MUSIC can’t compare with the CHRISTMAS CHOIR up here.

I have no words to tell you of the JOY their voices bring
for it is beyond description to HEAR THE ANGELS SING.

I know HOW MUCH YOU MISS ME, I see the pain inside your heart
for I am spending CHRISTMAS WITH JESUS CHRIST this year.

I can’t tell you of the SPLENDOR or the PEACE here in this place
Can you just imagine CHRISTMAS WITH OUR SAVIOR face to face?

I’ll ask him to LIFT YOUR SPIRIT as I tell him of your love
so then PRAY FOR ONE ANOTHER as you lift your eyes above.

Please let your HEARTS BE JOYFUL and let your SPIRIT SING
for I am spending CHRISTMAS IN HEAVEN and I’m walking WITH THE KING.

by Wanda Bencke
Christmas is here Matthew. How would this busy season be for you? The presents this Christmas morning I know wouldn’t be as fun as the paper, ribbons and bows. To see you at church in your little suit would be so cute. So many new experiences and sights to see. I am overwhelmed today at how much we are missing with you and especially you.

It’s surprising how often I am reminded that even though my grief gets a little easier each day I grieve of the future never to be’s. That’s where I am today. Where you would be. Just so many things about you I would love to get to know and I grieve the loss of that. My support group for parents of angels is great. But they have all lost their children after they grew up. They are finding it hard to go through the holiday without them too. They celebrate their children’s lives by visiting with their child’s friends and going to the places they enjoyed. And talking about their lives. Now I’ve realized I’m grieving that. I don’t have those memories of you. I don’t know your likes and dislikes. I don’t know anything about you. Who do I reminisce about you with?

Nobody knew you as well as I did and I hardly know you. All I know of you is that you enjoyed music. It settled you down. And I know that you got excited when your brothers played. I also know you moved towards my hand when I rubbed your back or feet through my belly. That’s it. I don’t even know what would have made you smile. Would I be one of those things that made you smile? Would the sound of my voice be enough to make you smile? I look at Andrew, the one you looked so much like. I try to picture you at his age. Would you tell me 100 times a day that you love me so much just like he does? Would you enjoy cuddling me too? Just so many questions. I get confused at what’s more difficult in this whole process. Grieving you or what would have been. Sometimes it’s what would have been since I don’t have memories with you. And that makes me cry so much, because I’m afraid that not knowing you means I don’t miss you.

As I look at the tree and the stockings and wonder all this and I get depressed. Christmas is supposed to be a happy and fun time. And baby, I am trying. At least for your siblings sake. But it’s so hard. No gifts for your stocking. No gifts under the tree for you. No game of pass the baby while everyone gets a chance to open their presents. No baby’s first Christmas bib. No you crying while posed with Santa. No happiness for me this year. I am thinking about you so hard today that it physically hurts. Please know that I love you so much and miss you deeply. But please also know. I am still a mommy and I have to put on a happy face for your brothers and sisters this Christmas morning. And just because I’m smiling, laughing, taking lots of pictures and playing with the new toys with the others; doesn’t mean I don’t hurt. You are on my mind and in my heart. I will not forget you. I just have to continue.

Things will never go back to normal. Only there will now be a new normal. And that’s the best I can do. For the rest of my life, I will miss you Matthew, and love you with a love I could never express in words. Merry Christmas my baby boy

10 months

It’s 4 days until Christmas. You would be 10 months old today. It’s getting tough. I thought I was hanging in there pretty good too. I was a little nervous with Christmas coming. But here is your marker. You would be so big now. Would you be pulling yourself up to stand by now? What would you be doing to my tree? How many teeth? So many new things to experience with you. So many losses other than just your death to also be reminded of. But it comes down to gratitude. Gratitude sounds like such a challenging word at a time like this. Is this even an attainable goal after one loses a child? I know in my head that I have so much to be grateful for. 6 living beautiful children and a husband who is also my best friend. The challenge is getting it to touch my heart when I’m overwhelmed with despair and loss. I am reminded of the saying that grief is a gift. Without experiencing grief, could I even grasp the capacity to love and be loved?

I’ve read that the deeper we have loved the deeper we will grieve. I am shown through this just how much I love you. I’ve also been told by others in trying to help me that since you lived for so short a time and that I never really got to know you, that it should be easier to move on and forget you. How could I ever forget about you? Could a parent ever forget the privelege of loving, caring and cherishing their child? You may have been with me for 9 months within and a couple of hours outside, but I am your mother and I could never forget all those things with you. I feel all the more reason to hang on tight to all those precious memories.

I think of Mary, the mother of my loving and wonderful God and take comfort. She loved Jesus with a pure heart and she had to watch him suffer and die. To bury her only child. She knew from the beginning that her child had a great purpose, but it must have been the most terrible feelings overcoming her to watch her child go through what he had to for salvation. His suffering and death would have left her with a great emptiness that she filled with Gods’ love. She was a brave and faithful woman. I take her words to the depths of my soul as they are quoted in the bible, “But Mary treasured all these things, pondering them in her heart.” (Luke 2:19). I look to Mary as my pillar of strength. I wait for the day that your death shows me its greater purpose.

So when I am filled with so much pain and sadness, I need to be thankful for the wonderful gift of love that you have shown me. To treasure every moment I had with you and ponder them in my heart.

Feeling Forgotten

Today is the week before Christmas. We are getting by as well as expected in a time like this. We thought we would have recieved cards this year with some words of love and encouragement in our first major holiday since Matthew’s death. To my surprise, we have been practically ignored.
I would have put our family letter and photo off this year, but I understand the importance of routine for our children. Especially in a time like we have had this year. So dutifully I wrote our letter. It wasn’t a very good one, but the best I could pull together in a time like this. We had our picture taken and wrote and sent our cards out like all our past Christmas’.
We have a string that goes across our living room to hold the cards we recieve. Christmas past by this time, that string is so full that I have to start putting the cards on top of each other. This year today, we have recieved a total of 14. I think that is what is so depressing this year. That our “friends” who have sent us cards in the past, have opted out to this year. Why? Not sure what to write? A card with just a name would have been nice. To know we are still important to others. But instead, we feel like we are being punished for having dead children.
I am so sad that Matthew died and sad we lost Simon too. But I know they are in heaven and are happy and still with us in a sense. The worst part this year is how left out we feel. Not only are we lonely for our children, our friends have left us alone too. That is one of my biggest hurts for this Christmas. We have been left alone by most of the people we thought cared and were our friends. I’m not sure if it’s because they are unsure what to do, or if it shows us who our real friends truly are.

A New Chapter

I spent most of yesterday, thinking about you. It’s what we seem to do, everytime the 21st of the month comes around.

Didn’t really do anything special, just thought about how much I really miss you.

It wasn’t until this morning that it dawned on me. Whether it’s the exact time or not is in consequential. Yesterday was 9 months since we lost you. Which means, the length of time that we’ve been seperated from you, is greater than the time you were physically with us. The thought of this makes my heart ache tremendously.

Mommy and I miss you so very much. We are praying to God daily that he might allow us to bring home a little sibling for you. Not being able to hold you leaves a yearning that is beyond compare.

If you’re anything like your older brothers and sisters, you’d be pulling yourself up on to furniture by now, soon you’d be walking, and then look out world.

Hopefully, Mommy and I will be able to get some answers and help prevent this from happening to other families. Then, I hope you’ll be proud of us.

 

Happy 9 months son. We love and miss you immensely.

 

Daddy.

Halloween Trouble

I had no idea that going through the costume box for Halloween this year was going to be heart breaking. Maybe that’s why I wanted to sew new ones this year, to avoid the inevitable. Why did this box upset me so? Going through the costumes, I came across the monkey costume that you were to wear this year. Also all the other ones you will never grow into. I can’t stand these overwhelming feelings that jump at me. But I am also glad I do have them. Missing you means I love you. I held the monkey suit for a little while and tried to imagine how you would have looked in it. I assumed pretty similar to Andrew in it. You sure looked like him at birth. I will have to go back to the picture of Andrew and think of you. You would be so cute. I’m sure though, like all our other children, you would spend a lot of your time crying and pulling at the costume. But we dress you guys up in these terrible things because we like it. We love how cute you guys look. And it makes other people happy to see babies dressed up. When we go out for candy this year, you will be with us in our hearts and thoughts. Firsts are quite difficult to deal with, but you are always a part of our life.