(Giveaway) Honor A with The Barefoot Book of Children

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Categories Books, Giveaway, Grief, Loss, Special Needs9 Comments

It is with a heavy heart that I must tell you that Marissa‘s son A, an inspiration to so many, passed away yesterday. He was just a few days from his fifth birthday, which his twin brother D will celebrate alone. Help us celebrate A’s life with The Barefoot Book of Children.

Honour this little boy's memory by sharing The Barefoot Book of Children with a child in your life.

A overcame hundreds of expectations that came with a diagnosis of a chromosomal deletion, learning to walk independently and brightening the days of those who met him. He was the inspiration for his mother’s efforts to bring accessible playgrounds to Utah.

The Barefoot Book of Children is a colorful book for and about children in all their glorious variety.Marissa asks that we remember A by sharing with as many children as we can The Barefoot Book of Children. This book shows childhood in all its diversity: the able-bodied and disabled; the rich and the poor; the rainbow of shapes, sizes, cultures, languages, and everything that enriches our experience.

In A’s honour, I am giving away one copy of this book to a reader. Please enter and share this far and wide. A’s life was cut short far too early, but his footprint remains. This giveaway ends on January 16, 2017.

a Rafflecopter giveaway

UPDATE 1/12/2017

Adding to this tragedy, Marissa and her family lost their home yesterday in a fire. The two surviving boys and both parents are okay. Marissa smelled the smoke and was able to get the children out in time.

However, their pets did not survive. Mementos of A—his baby things and supplies that could have blessed another special needs family—did not survive. The family cars did not survive. Marissa and David will have a lot of work ahead of them to bolster the children’s sense of safety, and all while they grieve A.

Many generous people have stepped forward to help the Christenson-Lang family. I can’t even wrap my head around so much loss being heaped on one family. You can donate financially to help them rebuild for what is left of their family at Youcaring.

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The Death of a Twin, Through the Eyes of a Child

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Categories Grief, Loss, Perspective4 Comments

It was a Christmas party, all jollity and camaraderie. I was an elementary school kid. Our parents introduced me to the pre-teen children of my father’s work friend. The boy and girl were twins, one or two years older than I. This was my first experience with multiples. At the time, I remember being confused because they were fraternal, not identical, twins. They looked more to me like “just” a brother and sister, but I was still enthralled with the idea of those two people as a unit.

We spent most of that first meeting playing with He-man action figures and other toys upstairs while the parents talked and chattered with their clinking drinks downstairs. I also remember reading some of my new friend’s Choose Your Own Adventure books. Eventually, after many rounds of snacks and drinks, and after a well-timed visit from Santa, it was time to go home.

We met once or twice again throughout the year, attending a BBQ or two with the family and hanging out poolside that summer. But it was the following annual Christmas party that I remember most vividly. I recall the twin sister falling down the long carpeted stairs of the house, while I looked on, unable to help. Amidst the confusion that followed, I learned that she was actually quite sick. She had a brain tumor that would occasionally make her dizzy, confused, and disoriented. This invisible invader had likely caused the fall.

If this one doesn't touch your heart, nothing will! Zyana reflects on how the death of a childhood friend, a twin, has shaped her perspective.

Her parents fought to save her as hard as they could, and she fought as well. I learned of their visits with countless pediatric specialists and more than a few late-night visits to pediatric urgent care centers and the E.R. In the end, she succumbed to her cancer a few months later. I wouldn’t consider us close friends of the family, but I do remember that the mother gifted me all her daughter’s books, the same ones that I has enjoyed reading the year before. I found that notion very hard to digest.

I always wondered what it was like for the remaining twin, to lose both his sister and twin, to a fatal disease for which they were unable to find a cure. I know it must have been painful for the whole family to go through, but especially hard for him. I imagine he experienced a roller coaster of emotions from guilt, to confusion to anger to sadness, and everything in between. Eventually I know that the family was able to make their peace with her death and move forward though life, but the shadow of the pain always remained.

"[#Twin loss] taught me to love my family despite their flaws." Click To Tweet

Years later, after all of us “kids” were married, I learned that the brother twin was blessed with twins of his own. That must have been an amazing full-circle moment for him. It must have brought up buried memories of grief, but the moment would also be made golden by the joy of meeting his own beautiful twin boys, whom I am happy to say are healthy and thriving today.

Parents of twins, and twins themselves, often speak about the beautiful bond that their children share. For those of us who have not yet been blessed with the experience of twins in our lives, it can be hard to understand all the challenges and celebratory moments. But whenever I see twins or triplets now, I think back to my first experience meeting this duo of real live twins. I marvel that they were around to share each other’s company and love for as long as they could.

This experience was formative for me. From a young age, it taught me to love my family despite their flaws. I learned to give extra care and love in the hardest moments. We don’t get to choose what challenges life hands us, but we do get to choose how we react to them. I now know that even in the face of the most excruciating circumstances we can always choose to respond with compassion, love, and grace.

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What Lasts: Carter’s Song

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For years, Angela Bickford struggled through infertility and loss.  Angela is now the mother of triplets, born prematurely, one of whom, Carter, passed away after 49 days.  This song, originally published on her blog angelabickford.com, pays beautiful tribute to the lasting impact of Carter’s short life.

Written and recorded by Jetty Rae
Slideshow photos provided by Angela Bickford

Never thought that it would come to this
I wake up in the middle of the night
And your face I long to kiss
Then I remember looking at you
On the other side of the glass
That night the Doctors said
You probably wouldn’t last

[Chorus]
What lasts is the love left beating
In this Mother’s heart
The dreams all scattered down in tiny little parts
I will love you, I will love you
Sweet Child you are mine
You’re heaven sent and I’m hell-bent
On telling the world you are my little sunshine

Waking up each day without you
Is a hurt I’ll never shake
Leaving your body there was a choice
We never got to make
Carry on, carry on sweet child we all carry on
I see you in your brother’s eyes and I tell your sister
You were strong

[Chorus]
What lasts is the love left beating
In your Father’s heart
The dreams all scattered down in tiny little parts
I will love you, I will love you
Sweet Child you are mine
You’re heaven sent and I’m hell-bent
On telling the world you are my little sunshine

[Bridge]
So many days have come and gone
We’re still standing, we’re still strong
You have stayed where you belong
But in our hearts you will go on

Angela is a stay-at-home mom raising surviving triplets. She lost her first-born triplet, Carter, after 49 days, and her survivors, B & T, keep her pretty busy with their ongoing needs as a result of their prematurity. She manages to find time for her business, her job at Hand to Hold, a non-profit dedicated to preemie/NICU awareness and support, and her personal blog (angelabickford.com). Her tagline ‘Mom of Triplets. Lost One. Survived & Sharing’ is her goal in blogging and she aims to share with others that it’s possible to survive after loss. She and her husband live in the Houston, TX suburb of Cypress.


Infertility TalesThis post is part of Infertility Tales 2014, How Do You Do It?‘s series to raise awareness about infertility and its impact on families. Please take a moment to read through some of the personal stories of loss, pain, fertility treatments, and success.

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Angela’s Letter to Her Infertile Self

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(A version of this post was originally published by HDYDI author Angela on her blog, angelabickford.com.)

Writing a letterDear Infertile Self,

I know it’s hard right now. I know you’re struggling…

You think your body has let you down. It hasn’t. It just may need a little more time. You think you’ll never have kids. You will. Just maybe not the way you think or when you think you should. You wonder why all the people around you are getting pregnant so easily, and you’re not. They may not be, or they may, but you’re really just seeing it more because you want it more, not because it’s happening more. Try being happy for them.

You worry that every time you go to the bathroom, there’ll be blood on the toilet paper and you’ll be miscarrying again. Try not to worry. Find the joy in being pregnant and try not to obsess that it’ll all go wrong again. You stress over every symptom, side-effect, feeling because you ‘just know’ it means bad news. Relax. Let your body do things the way it’s designed to. Sometimes, things happen for a reason. You seclude yourself from friends and family who care because you are too depressed to do anything but read books on how to get and stay pregnant. Spend some time with them, they’ll be the ones throwing your shower and helping you with the baby when it comes, and you’ll need friends to get through motherhood too.

You obsess over every tip and resource out there to help you get pregnant and resort to bad tasting concoctions and weird sex positions to try to achieve pregnancy. These things aren’t proven to work. If they stress you out more, don’t do them. You’ve started to hate sex – it’s a chore now – a means to an end. Try to enjoy sex with your husband. Forget about the timing, the medications, the charts and restrictions, and the awkwardness. Be spontaneous. You’re going to need to get the magic back after your struggle is over, so don’t let it go completely.

You are scared to reach out, to talk about the curse of infertility, to share your troubles or relate to others who are going through the same thing. It’s such a shameful thing, to be childless. LET THAT GO, most of all. There is no shame in difficult situations, only lessons and hope, if you look hard enough. ‘Let your darkness be a light to others so they don’t hit the same rocks you did’, a great man once said.

You think you’re life will be over if you don’t have kids. It won’t. You may just have to learn to live it a different way. Remember, being a mom doesn’t just mean someone who gave birth. Find ways to be motherly – they’re all around you…

Love,
Self of Now, Mother and Overcomer

Angela is a stay-at-home mom raising surviving triplets. She lost her first-born triplet, Carter, after 49 days, and her survivors, B & T, keep her pretty busy with their ongoing needs as a result of their prematurity. She manages to find time for her business, her job at Hand to Hold, a non-profit dedicated to preemie/NICU awareness and support, and her personal blog (angelabickford.com). Her tagline ‘Mom of Triplets. Lost One. Survived & Sharing’ is her goal in blogging and she aims to share with others that it’s possible to survive after loss. She and her husband live in the Houston, TX suburb of Cypress.

Letter to my infertile self. Hindsight is wise.


Infertility TalesThis post is part of Infertility Tales 2014, How Do You Do It?‘s series to raise awareness about infertility and its impact on families. Please take a moment to read through some of the personal stories of loss, pain, fertility treatments, and success.

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The Roller Coaster of Emotions: The Things that Hurt When You’re Infertile

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Categories Emotion, Feeling Overwhelmed, Frustration, Grief, Guilt, Infertility, Infertility Theme Week, Loss2 Comments

(This post was submitted anonymously.)

Infertility Roller CoasterLet me tell you about the emotions that come with everyday interactions with the outside world when you are trying to get pregnant.

It is really difficult when you are going through infertility, not just because of the desire to be pregnant and the loss when you find out you aren’t, but also for the day-to-day life and troubles that causes.

First, you have to deal with people talking to you about having kids:

  • Oh, you’ll understand when you have kids of your own” used to be a phrase of which I would roll my eyes and say okay. Now, that phrase makes me tear up and want to scream, “I WANT TO HAVE KIDS OF MY OWN! I CAN’T HAVE KIDS OF MY OWN AND IT’S KILLING ME!
  • When do you plan on having little ones?” was once an innocent, curious question. Months ago, people would get the response, “We’re trying,” and they would be so excited for us. Now, they still get the affirmative “Hopefully soon,” but it is with a sad, despondent look in our eyes.
  • I bet your mom is really anxious to have a grandbaby!” Yes, as we are excited to have one of our own. So is our doctor, who would really like to be able to tell us some good news for once. So are our friends who have been walking on eggshells for months around us. So are our siblings. So are our extended family. So are the strangers who get dirty looks when I am in one of my moods. Everyone wants us to have a baby, but us most of all.
  • Oh don’t worry, don’t stress. You just need to relax and it will happen to you.” Oh really? Relaxing is going to get me pregnant? I wish you had told me that months ago. Oh, and can you tell my doctor that this is the real reason why I’m not pregnant, because I haven’t been relaxing? I’m sure he just didn’t realize it. Oh that’s right, because RELAXING WILL NOT GET YOU PREGNANT! Well, for some it may, but we unfortunately cannot just wave a relaxation wand and POOF I’m pregnant. I wish it were that easy. I could have saved a fortune.
  • Do you have something to tell us?” People don’t actually ask that, but they do have this excited, questioning look on their face whenever you sit down to talk to them. It’s like they are excitedly waiting for you to announce your pregnancy, only to have to start every conversation with “I’m not pregnant.” Do you know how difficult that is to say out loud, when it is what you want more than anything?

Then, you also have to deal with the outside world.

  • Babies are all around us. Snookie is pregnant. Princess Kate is pregnant. Stupid Kim Kardashian is pregnant. So are all of my friends. Yes, all. Every single day, someone else is popping up on my Facebook newsfeed announcing their pregnancy. Woo. Good for you. This is actually really difficult, because I truly love my friends. I wish them the best, and I am truly happy for them. And then the wave of bitterness, anger, and upset washes over me, and I want to shut myself off from the world.
  • It’s amazing how often you see mention of babies. See pictures of (or real life) babies. See pregnant women. Hear about pregnant women. You don’t realize it until you are trying and failing. It becomes physically painful over time. I can attest that I actually have been in pain because of this. At a health insurance informational meeting, for example, I was in one of my especially sour anti-baby moods. I actually did a tally chart to see how many time babies were mentioned in the 1.5 hour meeting. The total: 7. Seven times, there was the mention of babies, having babies, getting pregnant, healthy childhood, etc. The hardest part of these baby mentions are that each time, I want to scream out “Stop talking about that!” or I just want to burst into tears. I’ve gotten really good at keeping my tears in check, quiet, and contained. I usually let it out once I get home. Again, poor hubby has to deal with this. He is a saint, especially because he is going through all of these emotions right along with me.

What are other things that hurt when you’re infertile?


Infertility TalesThis post is part of Infertility Tales 2014, How Do You Do It?‘s series to raise awareness about infertility and its impact on families. Please take a moment to read through some of the personal stories of loss, pain, fertility treatments, and success.

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Angela’s Perspective – Honoring Moms Who Aren’t: Remembering the Bereaved or Infertile

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Whether you yourself are a bereaved mom, a woman dealing with infertility, or a friend of someone who wants to be a mom, read this. Read it. Share it.

For loss moms and infertile women

(A version of this post was originally written by HDYDI author Angela in honor of International Bereaved Mother’s Day, a day set aside in 2010 to honor moms who have lost a child, whether it be through miscarriage, stillbirth, infant loss, or loss at another time. It’s a day to honor the moms who ache to be moms, but have struggled with infertility and may not have ever been pregnant. Who ache for morning sickness. Who ache for sleepless nights. It’s for ALL moms who have lost a child or never had one she so desperately wanted; who the world may not see as a mom, but who feels like one even though she isn’t holding her child.)

I am a proud mom to my children.  I am a loss mom, too.  And I would like to acknowledge my babies.

Baby Bickford, miscarriage 8 weeks, 2008
Baby Bickford, miscarriage 6 weeks, 2010
Carter Eugene Bickford, infant loss – born 12/9/11, died 1/27/12

carter

And I want you to acknowledge your lost child. It doesn’t matter when you lost them, because they mattered.

A person’s a person no matter how small. ~Dr. Seuss

They mattered. And it’s time the world took notice.

To the moms who lost babies… Don’t be shy about speaking your child’s name. Or the way they left this world. The only way the world will learn to accept the loss of a child as a real thing is if we talk about it. Not just to each other. To any one. To every one. No, I’m not asking you to walk up to a stranger and say your child died. I’m asking you to be proud that they lived, for however small of a time. To be proud enough to make that time count. I’m not asking you to dwell. I’m asking you to remember. To celebrate. To make a difference in the name of your child. To give hope to those who will come after you. To be a light in their darkness.

For those who feel the ache because you have yet to even feel the joys of pregnancy, I’m asking you to be kind to yourself. To take that desire to be a mom and put it 110% into something aside from grief. Mentor. Be a great aunt. Work in your church nursery. Babysit. Find the mothering moments in every day moments that you may be missing. Not because you’ve given up, but because you’re letting precious opportunities slip by, moments that you could be sharing your motherly instincts, your motherly love with little boys and girls who may need a motherly influence in their lives. Don’t miss out on these moments. These are the moments that will prepare you for the motherhood you so deeply desire.

There is no foot too small that it cannot leave an imprint on this world.

For the broken ones that know they will never have a child of their own, at least not from their own body, I’m asking you to find peace. Make peace with your body, your soul, and your partner. Forgive yourself for the feelings you have of guilt, like so many do. Know that you are still a mom in your heart, because in your heart is where that desire first grew, and it never died. You’ll always feel that way, that’s what makes you so beautiful.

For the moms who are moms and have never had to experience the pain of loss, know that it exists. Don’t brush it off. Don’t ignore it just because you couldn’t imagine how it must feel. Or don’t want to imagine it. Don’t ignore it because it’s too hard to talk about. If you do that, you’re telling your friend – the world – that these children don’t matter. Put yourself in our shoes, and just for a moment, feel what we do. Feel it so hard that you hurt. Feel it so much that the next time a loss mom wants to tell you about their baby or their loss, you listen. Hug. Cry. Bond. Because you are the model of what motherhood is. You are what we wish we could be. What we might never be. Remember that. And remember to always be grateful for your little ones, sleepless nights, poop-smeared wall, and all.

Love on yourself today. Love on a friend who’s feeling the loneliness of empty arms. And never, ever take a child – yours, the lost ones, or anyone else’s – for granted.

flowerAngela is a stay-at-home mom raising surviving triplets. She lost her first-born triplet, Carter, after 49 days, and her survivors, B & T, keep her pretty busy with their ongoing needs as a result of their prematurity. She manages to find time for her business, her job at Hand to Hold, a non-profit dedicated to preemie/NICU awareness and support, and her personal blog (angelabickford.com). Her tagline ‘Mom of Triplets. Lost One. Survived & Sharing’ is her goal in blogging and she aims to share with others that it’s possible to survive after loss. She and her husband live in the Houston, TX suburb of Cypress.


Infertility TalesThis post is part of Infertility Tales 2014, How Do You Do It?‘s series to raise awareness about infertility and its impact on families. Please take a moment to read through some of the personal stories of loss, pain, fertility treatments, and success.

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Helping My Children Cope with Grownup Challenges

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Categories Grief, Loss, Parenting, School-Age, Talking to KidsTags 6 Comments

7-year-olds have to cope with the sudden death of the therapist who was helping them navigate their parents' divorce.

Those of you who’ve been reading this blog regularly for a while know that my family has been through a lot in the last couple of years. We moved across the state; the girls started kindergarten in a town where they knew no one; they skipped up to first grade midyear; my ex and I suddenly divorced; the girls and I moved back home but to a new house and new school; my ex remarried and added two stepsisters to the mix along with stepmom within 8 months of the divorce.

The girls’ school has been an amazing source of support and solace during all this upheaval. In addition to gifted and deeply committed teachers, the school counselors have been nothing short of stellar. They even host a program called Divorce Club in which all children from divorced families can participate. It really helped my daughters, now aged 7, realize that they weren’t alone in the world of separated parents and blended families.

As a result of Divorce Club, my daughters felt especially close to their counselors. J, in particular, sought them out with some regularity to talk through the things that were on her mind. At the end of last year, the school counselors suggested that I consider getting my daughters into play therapy. While they were remarkably well-adjusted, they had been through an awful lot, and the two school counselors had to spread themselves among the 800+ children at school.

I didn’t end up getting my daughters into therapy until last month. Things were just too hectic over the summer and the first, highly recommended, therapist I tried to contact never returned my calls. When this school year started, one of the school therapists had moved to a different school district and the other was approaching maternity leave, so it seemed like an excellent time to find my daughters someone else they felt comfortable sharing their worries with.

We found a lovely counselor we all liked. At our first appointment, the three of us went in together and chatted. The girls were given paper and crayons and allowed to play freely, snack on doughnut holes, and play with the therapy dog. The therapist asked them why we were there. M wasn’t sure. J said it was because of the divorce. The therapist asked whether they worried about Mommy. They looked at her blankly. The therapist asked what Mommy did for fun. The girls agreed that I played on my computer. She asked them what they thought about the divorce. M thought that having a stepmother and stepsisters was great. J said she missed her Daddy.

During the next session, the therapist shared her impressions of the girls and their needs, since the girlies weren’t willing yet to talk to her without me there. I’d done a great job, she told me, but she worried that J was ready to write Daddy off completely and M may have already done so. She asked whether they were in the school’s gifted program, since they were clearly intellectually and verbally precocious. She would like to meet with the girls together and separately so they weren’t answering for each other and feeding off each other so much. She had me list Daddy’s combat history for context.

In our third session, I met with the therapist without the girls, while they went and drew pictures with her assistant and the therapy dog. I was able to share my concerns openly and honestly without fearing that I was imposing my worries or perspectives on the girls. The therapist told me that she felt that both my daughters had a lot of loss to process. She would help them grieve in as constructive a way as possible.

She cancelled our next appointment because her children had come into town with her grandkids to surprise her for her birthday.

When we went in for the next appointment, there was a note on the door. All her appointments were cancelled for the foreseeable future. There was a phone number to call, but it wasn’t hers. “Strange,” I thought, and pulled out my phone to transcribe the number.

A woman in an adjoining office poked her head out. “She died,” she told me helpfully.

“What?”

“She went to the hospital Monday. She died.”

J began to cry and I picked her up and held her. I pulled M to me. I asked them what they wanted to do. J wasn’t ready to leave. She told me that she felt close to her therapist in her office, so we went and sat in her waiting room for about 15 minutes and snuggled. J wanted to visit her office and I let her. She was ready to go outside.

We stood by the little pond nearby and talked for another 15 minutes. I tried to draw M out, but she was clearly more worried about her sister than the therapist or herself. J pondered the concept of fairness. She thought about all her loved ones (mostly pets, ours and friends’) who had died. M tried to comfort her with talk of Heaven, but J explained that it wasn’t much help. She was mad that she was so young and was going to have to wait so very long to die and see people she cared about in Heaven.

It turned out that J had been doubting the existence of God for a few months, thanks to overhearing disagreements in Biblical interpretation and pondering the existence of different religions. I told her that religious belief was a choice. She had to choose for herself what to believe. I wished I could just tell her what was to be believed, but I couldn’t do so honestly. I’m an atheist and she knows it. Finally, I told her that I believed in love. It wasn’t rational or sensible, but it was something I believed in with all my being. That comforted her.

“I believe in love too, Mommy. And God is love. So I believe in God.”

That will tide her over for now. We went into town and got Amy’s ice cream, the ultimate comfort food.

Now both J and M have yet another loss to deal with. J says she’s not ready to find another counselor. I called the school and let both the teachers and the substitute counselors know what had happened.

I’m just waiting for M to explode in anger, as she does at times like this. It’ll be within the next week, I think, and then we’ll find out what she’s been feeling.

What do you do when you have to help your children cope with adult emotions?

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

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Triplets?! Angela’s Story of Love and Loss

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Categories Birth Stories, Infertility, Loss, NICU, Theme WeekTags , , , , , , , , 9 Comments

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


I’ve told my story so many times, you’d think I’d be able to write it down too. I’ve given talks to women’s groups and loss groups about it, done blog posts about it, etc., but something about this one is different. Maybe it’s because I know the audience reading this will be different… you’ll be in the thick of preemie-hood or the NICU or bed rest and you’ll want comfort and hope…

And I won’t be able to give you those things… Well, not in the way you’d expect at least. You see, my birth story ended with the loss of one of my triplets. I don’t want to scare you – having a preemie doesn’t mean you’ll experience loss too – but I do want to be real with you. One of the most real things I can do or say is this… my hope comes from knowing he made a difference in his 49 days of life. It comes from seeing his surviving brother and sister meet milestones and overcome obstacles. It comes from knowing that my story gets to be told and that it matters. And I hope you’ll feel that hope in what you read today, and not the sadness of loss.

I got married in 2007 and always knew I’d be a mom. We got pregnant right off the pill a year later, but sadly, we miscarried. We. Were. Devastated. I never thought I’d be dealing with miscarriage. Or what came next. Three years of infertility, another miscarriage, 2 rounds of IUI, and finally – finally – we were pregnant.

Angela-2

With triplets.

Angela-5

I was scared all over again. I was placed in the high-risk category. We nervously counted down the weeks and each week were surprised that all was going well. I had a shortened cervix, so I had a cerclage placed. At 22 1/2 weeks, I was placed on home bed rest to slow things down a bit. But that only lasted 2 weeks, and I was off to the hospital for a month of bed rest there. It was an experience that stuck with me so much, I even wrote a book about it.

Now the goal was to keep the babies cooking as long as possible. After 11 days, Baby A’s water broke, but he stuck in there for 19 more days.

From before birth, Carter fought to live. He fought to help his brother and sister live. While I was in the hospital on bed rest, his sac ruptured 19 days before his birth, leaving him unprotected. Because he was able to stay in, his brother and sister were able to continue to grow.

It would be food poisoning that would finally do me in. 2:30 a.m. and I was in full blown contractions. They couldn’t stop them, and I delivered my trio at 27 weeks and 5 days at barely 2lbs5oz each. My mom was in Hawaii. I’ll never forget how crushed she was to not be there. They were immediately taken to the level 3 NICU and I was taken to recovery. I don’t remember much about that first 12 hours. I do remember that at one point, my husband had to tell me some bad news, and I was so drugged up that I just kept encouraging him like it was happening to another baby and not ours.

birth of triplets

At birth, Carter was the weakest. On the first day, the doctors didn’t think Carter would survive. His lungs weren’t working. After a tense few hours, it was evident Carter was a fighter as he survived his first brush with death.

Those first few days they were in the NICU weren’t too hard, probably because we were still in shock and adjusting to the reality of things. It was the day of discharge for me that things got real. We got bad news on all three of them. It was the first time I cried. I wouldn’t cry again for 44 days…

During his first few days of life, he struggled with high glucose, needing high oxygen support, and needing morphine and blood transfusions. Little did we know this was just the beginning. The doctors also discovered that he and his siblings all had E Coli sepsis, which wreaked havoc on their lungs and caused them to have brain bleeds. They were diagnosed with level 3 and 4 brain bleeds and hydrocephalus, a condition which can lead to cerebral palsy or other issues.

At home, I focused on pumping – getting over 70 ounces a day of the liquid gold. It kept me sane, giving me something to do for the babies. I went to the NICU every single day. I think I might have missed one day in total. I had to be there. I had to.

After only a week of life, Carter started to experience edema, and we began to lose the baby we knew and see a more swollen boy. He would live the rest of his life with this challenge, getting up to 6 ½ pounds at one point when he should only have been around 4 pounds at the time of his death. Throughout the weeks, Carter’s journey would be one of constant ups and downs. He would have a good day, only to have a bad day the next. After about two weeks of life, we began to discuss the possibility he might not survive this journey. We kept our faith and refused to give up on our little boy.

Each baby had their ups and downs. Braden had ruptured bowel at 7 days old, Tenley and Braden both had to be transferred to a higher-level hospital and had surgery for their brain bleeds that first night there. She’d have 2 surgeries by the time she left 86 days later, and he’d have 4 surgeries and leave after 111 days.

Even when Braden & Tenley continued to make progress and moved to a different hospital, we did not give up hope that Carter would recover and be well enough to make the move with them. But, the night of their transfer, we were told he only had a 10% chance of making it. We still remained hopeful, and our boy still fought. For the next few weeks, we had many ups and downs, many times we didn’t think he’d make it. At one point, we said our goodbyes and made peace with everything that might happen to him. We knew he’d be going to a better place, and we knew we’d be okay too.

So many emotions coursed through my body during these days. It was unbelievably hard. It tested my faith, my marriage, my friendships, my everything. I was in a whole new world. I could spout off terminology like I was one of the doctors in the NICU. I kept a detailed journal of everything – the updates, the records, the stats – everything. It was another way I stayed sane.

Then, things took a turn for the worse as his kidneys shut down and he was on full support. But, they also took enough of a turn for the better that a small window of opportunity was found to transfer him to the same hospital his siblings were. One last chance. After he was moved, he made great strides. He fought hard, and he won several battles. He was coming out of the woods…

Tenley would eventually get contaminant meningitis at the site of her brain surgery opening, which sent her back to level 3 and almost took her life. It might not have been that bad to deal with, except for the fact that it happened at the same time as we were losing Carter.

At the same time as Tenley was back in level 3, Carter wasn’t keeping his stats up and was weakening. They couldn’t figure out why. They did what they could, but it didn’t look good. He hung in there for awhile, but that Thursday night, his stats dropped very low – dangerously low – and they couldn’t get him stable again. We were called, and we came. They found that fluid had filled his lungs. He had an infection – the deal breaker, we knew. And, it was time to let him go.

It was my husband who finally came to the decision to let him go. And I had to let him make that decision. As cowardly as it may seem, I couldn’t do it. Sure, I said goodbye and I made my peace, but I couldn’t bring myself to say those words to the doctors.

We held him on Friday, the 27th for his last 2 hours of life and for the very first time in his entire life… we watched him slip away, and we comforted him during his last moments as we sent him off into Heaven, knowing we’d see him again one day. He fought right up until the end. He helped save his brother and sister, and we believe he touched many lives with his fight and his story…

It had been 44 days since I cried. I tend to only cry when I’m frustrated or angry. Sometimes when I’m overwhelmed, but rarely when I’m sad. But, I cried. I lost it. Hyperventilated when the doctors took him off the machines. Maybe I was mad at the world in that moment, I don’t know…

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I only cried a few times in the weeks after. Something in me knew I had to keep going for my survivors. I was still in the thick of it and needed to focus on them. I think I made a conscious decision to choose to be okay. I wanted to celebrate the 49 days I had with him, and not mourn what I wouldn’t have in the years to come. This perspective is what gave me hope and allowed me to move on. Granted, I did have emotional affects from the experience and had a bout with post-tramatic stress disorder, especially once both his siblings came home – and he didn’t.

Carter announcement

All this is hard to hear – and write – but it needs to be shared. It’s one of the unfortunate realities of having a preemie. It’s why the research and the support and all the community surrounding it is so important. It’s why my husband and I do a yearly fundraiser and are in the process of forming a non-profit. You can actually participate in this year’s fundraiser currently by going here.

I do want to end on a positive note… today, Braden and Tenley are about to turn two. They’re thriving, overcoming obstacles, hitting milestones, and making us feel blessed in every way. Yes, they’re preemies. But they’re more than that. They’re fighters. Survivors. Miracles. And, they’re my gift.

then now

SMALLtwobirds9604

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Let’s Talk About SIDS, Baby

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Categories Fear, Infants, Loss, Medical, Theme WeekTags , 1 Comment

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


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Image courtesy of the Safe to Sleep® campaign, for educational purposes only; Eunice Kennedy Shriver National Institute of Child Health and Human Development, http://safetosleep.nichd.nih.gov; Safe to Sleep® is a registered trademark of the U.S. Department of Health and Human Services.

SIDS (sudden infant death syndrome) is the monster under the bed, the ax murderer hiding in the shadows, all of my nightmares made real. SIDS is the diagnosis used when an infant dies without warning. The child is alive and healthy and then she’s gone.

SIDS is something of a controversial diagnosis, since it’s a catch-all for cases where no other explanation can be found. As with many conditions, our medical understanding is constantly evolving. NPR ran a story a few years ago arguing that SIDS deaths are almost all avoidable suffocation deaths in which the diagnosis is an act of compassion to the caregivers.

Premature and low birthweight babies are at higher risk for SIDS than full-term normal weight babies. The irrational fear during my pregnancy that my children were conjoined twins was replaced by the slightly more rational fear that I would lose one or both to SIDS. It certainly didn’t help when a coworker of my mother-in-law did, in fact, lose a grandchild (a twin, even) to SIDS when my girls were a few months old.

I did my research and did what I could to reduce my daughters risk of dying from SIDS.

  • During my pregnancy, I avoided smokers. I’ve never so much as touched a cigarette, but I wouldn’t allow them anywhere near me while I was pregnant. It helps that Austin doesn’t allow indoor smoking and my employer was on its way to becoming the smoke-free campus it is now.
  • I laid the babies on their backs to sleep. Stomach and side sleeping in infants too young to roll over has been shown to increase the risk of SIDS deaths.
  • I used firm crib mattresses with tightly fitting mattress pads and sheets. My arm muscles did some major work wrestling those sheets on.
  • I didn’t co-sleep. Don’t get me wrong; I occasionally fell asleep while nursing in a side-lying position, but I returned the babies to their cribs when they were full. Keeping their crib in my room worked out really well until after they weaned. They slept in a crib together, though.
  • There were no pillows, blankets, bumpers or toys in their cribs. They kept warm in footie pajamas and sleep sacks that couldn’t bunch up around their faces and present a suffocation risk.
  • The cats were not allowed in the nursery or my bedroom until the girls outweighed them, by which time J and M were cruising and talking.

I also did my share of irrational worrying. I kept the baby monitor on high enough that I could hear both babies breathing. I could tell their breaths apart, and any time I imagined a missed breath or two, I ran to their room to check on them. During the time from first rolling over until both babies were expert rollers over, I slept on the floor next to their cribs. Any time one of them flipped onto her stomach, I rolled her back over to her back. J wasn’t  much a fan of this arrangement, but she had to put up with it until I was confident she could consistently and confidently move her head to the side to catch her breath during tummy time.

A mom of premature twins talks about sudden infant death syndromeWas I an overprotective new mother? Absolutely. And I don’t apologize for it. SIDS happens. I just won’t let it happen to my babies… or yours.

Want to know more? Check out this brochure ☮  from the Eunice Kennedy Shriver National Institute of Child Health and Human Development and its Safe to Sleep Campaign.

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

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Of Closure and Remembrance

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Categories Grief, Loss2 Comments

I didn’t expect that my first post as a contributor with the HDYDI family would be one about loss but it is. You see, before I knew the joy of being a mother, I experienced the pain of losing a child. As part of the National Pregnancy and Infant Loss Awareness Loss Day I want to share with you my path of closure and remembrance.

On 2008 Christmas eve, Santa outdid himself. After 3 years of trying to conceive, I had a positive pregnancy test. Life became really surreal for me and I’m not sure my feet touched the ground in those first weeks of finding out that I was pregnant. Once my first trimester was over, I made the big announcement – WE’RE HAVING A BABY. I could exhale. We’ve made it through the riskiest part of being pregnant. It was time to start picking out names and furniture and cute baby clothes.

The next day, the proverbial shoe dropped – I started bleeding heavily. The doctors confirmed that I had a twin molar pregnancy. Molar pregnancies occur 1 in 100,000 pregnancies. A twin molar pregnancy with a coexisting normal fetus is even rarer. So that’s what I had – one normal perfect fetus and one mole with potentially fatal consequences. 3 weeks later, I had a miscarriage. While waiting to be seen by the doctor, I went to the restroom  and that’s where my little boy was born – 16w2d – perfect in every way but too tiny to live.

Recovery was hard. On the day of my miscarriage, my beta Hcg was over 2 million. I spent the two days in the hospital before I could go home. I had difficulty breathing, my blood pressure was very high and my thyroid hormone levels were so low that my body had the jitters and I was having heart palpitations. It took 6 months of monitoring by the MFM and gynecologist oncologist before my body was back to normal. It was another 6 months before my hearth was ready to try again.

Remembrance

I made a remembrance bracelet for my son and wore it for a year afterwards – until the day I didn’t feel guilty about taking it off. When I got pregnant with my twins, I didn’t inform my family until the pregnancy was 36 weeks. I refused all ultrasound photos. I had already amassed a collection of ultrasound pictures with no baby to show for it. I was scared to lose again

But this time, I didn’t lose. My beautiful baby girls were born at 39 weeks. After their birth, my sister came to help out and she saw my son’s teddy bear and bracelet in the closet where I kept them. She asked why I still kept it, assuming that part of closure was that I got rid of everything related to what was a tragic event. I smiled and said nothing. She didn’t understand and that was ok with me. Sometimes people who truly love you may still not get it. Let it be ok.

To a lot of people, a 16 week old pregnancy is just a blip on the radar. To a mother, it’s a little person that’s managed to grab a hold of your heart before you ever met. Yes the miscarriage is among the worst moments of my life. I could never erase the memories if I tried. But I also have good memories – memories of a very boisterous little boy who liked to give the ultrasound techs a run for their money. In just 16 weeks, I fell in love with him and that love is still strong. I still miss the way things could have been. Yes I have closure but I will always remember.

Have you been in a place of loss before? What would you say or do for a mother who’s experienced infant or pregnancy loss to honor their angel?

Yetunde has 3 year old twin girls and dishes about her experiences on the blog aptly titled mytwintopia.

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