Love letter

Dear Isaac,

I can’t believe it’s been this long since I have written you a letter. It’s been a very very hard couple years since you touched our lives. While I believe that you are so aware of everything that happens in our family, it also feels good to write to you about events and feelings.

I’ve been participating in a challenge this month in honor of Pregnacy and Infant Loss awareness month.

 Each day is a different theme or part of your story. Each day I share a little part of my heat as it relates to you and our family. The support I have received as I’ve done this has been humbling. So many have shared their own stories with me.  It truly breaks my heart that there are so many that have lost a baby. The pain of losing a child is beyond comprehension and it’s not something that anyone can truly understand unless they have walked that path. Parents shouldn’t have to bury their children—no matter what age.

Today the theme was “Love Letter”. The theme is given and it’s up to us participating how we interpret it. I decided that “Love Letter” meant a letter to you my sweet boy.

I honestly can say that not a day goes by when I don’t think, ponder or long for you. Especially now with your new baby sister. It sometimes feels weird how much she reminds me of you, even though I shouldn’t know anything about you. I find myself looking at her in my arms and I have to convince myself that it’s not you. I have found that I need to put a pretty little bow on Emilyn as often as possible as a physical and visual trigger that it’s not you I’m holding.

 I was warned that bringing a baby home after leaving one at the hospital is a surreal experience and mine has been no different. Emilyn is a constant reminder that I lost you. Her first smile, made me wonder about your smile. Her bright blue eyes have been curious what color yours are, her calm, chill personality is such the opposite of your big sister and makes me wonder how you fit in the mix. Nursing Emilyn reminds me of all the milk you didn’t get to drink, but that I made for you. Even with all the triggers, Emilyn is a gift. She is such a blessing to our family. And honestly, I am doing so much better with my grief than I used to be. I have come to terms with your death in a way that can only be explained spiritually. I feel so close to you and I am grateful that God has not closed that door between us.

You are always so present in our family. We all talk about you openly. Even your daddy can’t talk about his family without including you. We both always say we have 3  children. 

We imagine you with us when we talk about future family vacations. We joke about what a handful a three of you would be together. We see other children your age and picture you. Sometimes our fantasies include your disorder and other times you have a perfect functioning body. Sometimes we think of you with smiles and laughter and sometimes your memory brings tears.

No matter when or how, your memory is always welcome. 

 I hope you have enjoyed your recent time with my Daddy. I miss him terribly and grieving him has only compounded my pain in losing you. Without the testimony of my Savior, I would feel so lost in it all. I’m not sure I can even express how much  losing you both has affected me.

 Well, I’m not sure how much of a “Love Letter” this turned out to be, at least by general terms, but I can say that each word I have written is only written out of deep love for you.

I miss you beyond words. I love you beyond expression and I can’t wait to see and hold you again.

Love always,

Your Mama

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You’ll miss it when they’re older. 

Sooooo many times young mamas are told “You’ll miss these days when they get older” or “treasure the time when they are young”. You know what I mean. I know these comments are always well intentioned, but I never understood them. 

My oldest was and still is a needy and high maintenance baby and child. She’s hard to truly explain unless you have one like her, and if you have one like her, you know exactly what I mean. The newborn stage with her was It was hard and overwhelming, and because of what she was like I got a lot of well meaning advice from friends. It was rough for everyone. When she turned one I wanted to throw myself a party for actually surviving her first year. (Little did I know….haha). 

I don’t miss those days.


When I lost Isaac, all of sudden I longed for those newborn baby days. Desperate to see him smile for the first time. Wondering about his eyes. Daydreaming about how I would juggle a toddler and another (completely different) high need baby. I wanted to soothe his cries and walk with him at 2am. I actually felt like I wanted lose sleep over his wellbeing and just hold him again, dang it! I wanted to feel his weight on my chest. 

I started to get a glimpse of how and why people treasure the baby days. 

Now with my new sweet little rainbow baby, I just rocked her to sleep after changing 3 poopy diapers in 10 mins and a scream fest just before that. As I sit, rocking her, snuggling her close, and feeling her nod off into a peaceful sleep, I realize I want to make time stand still. With her mostly likely being our last, I can’t get enough of these baby days. Somehow I’m associating all of Isaac’s firsts with hers, and seeing her fly through them leaves me aching for more—not another baby, but more of the what I have. More time with my sweet babies. 

And now I start to understand a little of what people mean when they say they long for the baby days.  So I’m going to sit here and relish the time I have with the baby asleep in my arms—treasuring the time I have with her when she’s young, because I might miss it when she’s older.  


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When I was pregnant with Isaac it made sense to write. It was like I couldn’t do anything else. I had to write to get out my feelings so I could survive. While I have distinct memories of feeling sick to my stomach after I posted an extremely personal post–worried at the reactions I would get–for the most part, I also didn’t care. I wrote for me.

I remember thinking durning that time that when I was pregnant again I would write all the time talking about what I was feeling and experiencing with going through a pregnancy after loss.

Then life happened and well everything normal in my world suddenly went abnormal. I’d never felt more alone and helpless–well–ever.  I also had never felt more judged.With Isaac, most everyone was supportive and loving–but when my grief and pain started to go on too long, suddenly my openness and candidness felt like open wounds not healed enough to be given to people to have opinions about. I fought spiritual battles, physical battles, emotional battles and mental battles. I felt attacked and weak on every level, with little to no allies or resources. I wasn’t strong enough to fight for friendships as well.

So when I got pregnant, I wasn’t sure how to talk about this news. What would people think? What were people going to say? I wasn’t even sure how I felt about it, let alone be ready to hear how everyone else felt about it. I’ve written probably 2-3 blog posts about this pregnancy, but I haven’t felt comfortable or ready to share them. It’s like people can understand the grief of losing a child, but can’t wrap their head around the years that happen afterwards–let alone the anxiety that comes with a pregnancy after loss.

More and more I have realized at how lonely the road of grief is. Perhaps not lonely at first, but because it is such a long journey, most people aren’t capable of the endurance needed to continue on.

I’m not bitter towards anyone–I would be lying if I said I haven’t been deeply hurt at times, but I can understand why this is a journey I take alone–sometimes with my husband–but mostly by myself as he must walk his own grief stricken path.

But what I have come to understand more than anything else is that the openness I once used to share so freely is now filtered. I second guess almost everything I say and do. I worry constantly about how my actions are being taken and feel I have to justify almost everything. Some may just chalk that up to my increased anxiety–and perhaps that’s true, but for me I know that it’s more than that.

This brings me, through a very short story version of the last few years, to my present day and present pregnancy. Doctors that don’t seem to understand when I question them when they tell me “everything looks great” or tell me that pains or struggles are “normal pregnancy symptoms”. The hardest part about going through something traumatic is dealing with the aftershocks and triggers that follow.

Being pregnant is the biggest trigger.

Ultrasounds, Dr. appointments, Iv’s, ER visits, baby kicks, blood tests, pregnancy clothes, baby clothes, baby department, other babies, and back pain.

I recently posted on my Facebook about back pain I was having and if it was normal. It wasn’t a symptom I remembered when carrying Audrey—but yet, I can hardly remember anything from the pregnancy except that I was so sick I could hardly function.  Every memory I have of being pregnant with Audrey was overwritten by my pregnancy with Isaac.

The last time I remembered having back pain that felt similar to this pain was when I went into pre-term labor at 23 weeks and was carried off in ambulance. Only to wait for hours before being told I had kidney stones, but then finally being told in broken English “You will have this baby tonight”. Miraculously–and by an act of God, I did not lose Isaac that night and went on to carry him another 10 weeks. You can read all about that night here.

As I read though the very thoughtful responses to my Facebook post, I realized that maybe one or two people understand why the back pain was so concerning to me. It dawned on me that I had not really asked the questions I was really wondering at all.

Is the back pain I’m experiencing early labor? Am I losing my baby? Am I crazy? When I realized that I was 22 weeks–almost the exact same gestation as I was with Isaac, I nearly lost it.

When I asked if the back pain was normal, what I was really looking for was reassurance  that this baby didn’t have something wrong with her and that the intense pain in my back wouldn’t turn into contractions and that I wasn’t going to end up in the ER. Going to the ER is not a comfort to me, it’s a trigger.

Triggers are terrible things. I guess in someways it’s our body’s way of protecting us. Desperate to not have to go through that hurt again, so when a trigger hits–we run and duct for cover no matter how crazy we look and seem to others.

While I might have been able to be more open about that in the past, I find that I am keeping more and more to myself. I don’t talk about triggers or hard experiences anymore. I don’t talk about ER visits or debilitating pain. I don’t talk about crisis of faith or my road back after struggling so much. I don’t talk about how it felt having to have my husband come home early from Deployment to take care of me. I don’t talk about the rumors that circulated about me being suicidal. I just don’t talk anymore. I don’t open up.

Maybe I should. Maybe I am.

All I know, that tonight, writing became necessary again. It became a way for me to process and move forward. Tonight I decided that I have the faith to open up–trying not to fear the consequences of showing my heart.

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You are never lost to me.

Dear Isaac,

I really miss you tonight. I say that like it’s a rare occurrence, but in reality I miss you all the time. The other day I closed my eyes and tried to remember what it was like to hold you in my arms and I couldn’t. The memory of your earthly body is fading and it is absolutely devastating. I show your picture to anyone who will humor me, since no one asks to see you. I sit and stare at pictures of you trying to convince myself that you were really here and I really held you in my arms.

The year and a half since your death have been really hard. *REALLY* hard. We’ve moved a lot and each time I don’t know how to introduce my family. I never exclude you, but I hate the looks, comments and uncomfortableness that comes when I tell people you are in Heaven. I have had to do most of it alone, as your daddy has been called away by the Army a lot. I hate feeling like my family is so broken up. It feels like your death was a nuclear bomb leaving bits and pieces of us everywhere. My body especially feels dismantled. My heart so detached from reason. I think my brain is lost all together.

Your daddy misses you so much. I hope you can see the proud look on his face when he speaks about you and the comfort of knowing that you are with your Grandpa brings him. Please look over him while he is far away. Be with him as often as you can, as it makes me feel like our family isn’t so torn apart.

Audrey misses you too. She often asks when you get to come live with us forever. It breaks my heart and I never quite know what to say. I pray for your presence at that time and hope that Audrey can feel how much you love her—because I do believe that you do. Tonight she said that when she grows up to be a Mother that she wants to be your mother. She loves you so much and just wants to take care of you. She adores being a big sister and wants to be the one to teach you things. Maybe she can teach you some of the songs she’s learning. It’s funny, she’s the big sister, but I most often think of you watching over her.  She always talks about and includes you, mostly without my prompting. She talks about you like you are just away visiting some family and will be home soon. It warms my heart.

My body has gone through a lot recently. Grief has taken a very physical toll. It’s hard because most people don’t get it because it’s not outwardly apparent. There are many times I feel judged for my inability to do things.  And moving. I hate moving. It tears me away from people that knew you. Really knew you. Knew you more than just my dead son. Sometimes I wish I could just hand people a card and tell them to read this blog before we became friends. Help them understand me so I didn’t have to say the words out loud. Again. When I make new friends I feel like I have to tell them upfront that I lost you, otherwise what else is going to explain my random panic attack or sudden sobbing.

Ha, I say I lost you as if I “misplaced” you or don’t know where you are. Just to be clear, you are never lost to me.

I wonder if I’ll ever be a normal person again. Will anyone ever get to know the bright, happy,hopeful, energetic Sara? Or will there only ever be a dimmed, burn out, exhausted version of myself. Mostly I worry for Audrey. I pray so often that you are there to help her. She struggles you know. And people judge her harshly for it. My parenting gets judged. People see her “misbehaving” and instead of compassion, empathy, love and support, people tell me to suck it up and that I’m letting her walk all over me. Or perhaps that she’s acting entitled. Never ever once has anyone said “she just acting normal for a child that has lost and been through so much”. At least no one has ever said it without me saying it first.  It’s like grown ups are allowed to grieve, but children are not. Children are not allowed to misbehave–ever. Then I get judged because I cannot handle the stress of her abnormal behavior. That I’m weak and just need to be stronger and more in control.

If they only knew how much I desperately wanted to be “in control”.

There are times when I wish people could understand exactly how much effort it takes to get us to church every week. Or how proud I am for cooking dinner. Or how put together I feel that I have made Audrey’s lunch for school everyday. Often I want to wear a sign that says, “my son died, we’ve moved 4 times, and I haven’t lived in the same place as my husband for almost a year and now he’s deployed…..please, instead of judgement, just give us compassion”. On those occasions when people do show compassion, I am overwhelmed by emotion. Like the time I started crying at SmashBurger because the guy gave me a free order of fries. Or the time I had to go cry in the bathroom before teaching my lesson at church because Audrey’s teacher took her and comforted her so I could go teach. Or the time when a friend randomly brought me dinner so I didn’t have to cook. Or the time when another friend watched Audrey and I just came home and took a nap.

I don’t know if you have any baby angel dust, but if you have any pull—can you please sprinkle these amazing people with some extra blessings for watching over your mama?

For the hard times, I am sure you see it all happening. I wonder what you think. I wonder how it makes you feel to see your mother dissolve into tears and panic attacks over careless words and actions of others. Or if you wish you could hold your sister when she can’t be consoled. Or when she cries because you can’t come home. I wish you could be there to stick up for Audrey when others treat her poorly or adults treat her harshly for misbehaving because she just doesn’t know how to process all the change she has been forced to live through in just 4 short years. Many times I have prayed for your presence when I just can’t handle doing it alone anymore. I miss you so much.

I can’t help but wonder what I would be like if you had lived. If I had a normal healthy pregnancy. I know I would still have hard days and being a parent of 2 while daddy is gone would not be easy, but I have to hope that I would be handling it better than I’m handling things now. Perhaps I wouldn’t feel so broken. Perhaps I wouldn’t feel so alone. Perhaps hard days would just be hard days and not devastating, soul shaking, panic attack filled days.


People tell me that “time heals”, but I am not sure that it does. Right now time has only made me feel more alone, more forgetful and more desperate.

I miss you, my son, you are never–ever–far from my heart and thoughts.

Your mama.

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Mom Guilt 

Your mom guilt intensifies about 1000000% after losing a child. It’s amazing the things you can feel guilty about. It never goes away either. You never feel better. Time passes, but you can’t get passed the guilt. 

Guilt that I can’t handle being away from from daughter because of separation anxiety and PTSD. 

Guilt that my grief is making me a bad mother to my living child. 

Guilt that I can’t do what I used to do. 

But mostly I have guilt that I take my time for granted with her. Like I’m not allowed to get frustrated or overwhelmed with her cute toddler personality. 

I remember not long after I found out about Isaac, I held Audrey’s hand so tight. I could hug her hard enough. I slept with her in my arms. If I wasn’t touching her, she was too far away. 

The guilt I felt leaving her for HOURS for doctors appointments. Even though I knew she was much better off playing with friends than suffering through waiting rooms and ultra sounds, I felt terrible for leaving her crucial years to someone else. 

Even thought it has been its been 1 yr, 4 months, 28 days since Isaac left this earthly existence, the effects of his death live with us daily. There isn’t a moment that isn’t clouded by day dreams of his survival or sorrow of his passing. 

But mostly it’s a mosaic of both. The tiny shards of glass threatening to cut, but instead coming together begging me to see the bigger picture.

And I try. I really, really try. If only I could just breath. 

If only I could get past the guilt. 

Why can’t I get past this? I’ve known lots of people that have lost a baby now, and they all seem to be functioning human beings. 

Granted there is more to my story with moving and and moving, and then moving again and then deployment. 

No one claimed I’ve had an easy time. 

But I get so tired of the excuses. So tired of the guilt. So tired of explaining why having an office close at 3, when I expected it to be open until 6pm puts into sobs. 

Tired of praying to God to just watch over my child so that I don’t screw her up completely. 

So very tired of pulling this load of grief alone. 

So tired of having to make news friends while broken. 

So tired of…


The guilt of always being the “needy” one. 

The guilt of watching too much T.V. just to distract me from the fact I can’t make coherent thoughts, let alone sentences. 

The guilt that I can’t make dinner on a regular basis. 

Guilt that I have no idea who I am. 

Guilt that I am mad that God won’t answer my prayers or that I can’t find his love in the situation. 

Guilt that I miss my husband fircely and then resentful that we’ve been sepersted more than we’ve been together during the hardest year of my life. 

Guilt that I wonder if I am even a good enough mother to handle two children and maybe that’s why God took my baby. 

The guilt that I can’t seem to get pregnant and that I feel hurt and pain when I see other rainbow babies. 

The guilt that I feel when I think maybe I don’t want another baby. 

The guilt I feel over hating the army for taking my husband for a year–especially when I need him the most. 

The guilt over not having any energy or patience left to deal with a meltdown from Audrey–despite my frequent prayers for it. 

The guilt for giving up dreams and hopes because I’m too exhausted to put on normal clothes let alone go after anything life changing. 

Guilt that I can’t just put it all aside and be happy person. 

Lately Audrey has been scared to go potty. It’s really weird. Today, while at a restaurant (because I can’t be bothered to cook), I must have taken her to the potty about 20 times. I would take one bite of food and off we’d go. Come back, drink of sip of water and of we’d go again. I never yelled or scolded her, but I hadn’t eaten since 8am and it was now 4pm. The Hangry monster was insisting on coming out and threatening this child with her life. 

After about the 18th visit, I was done. Totally spent. Even the waitress asked if she could take a turn. And *gasp* I let her. I let someone I didn’t know take my child to the bathroom. 

The guilt. 

When Audrey came back, once again crying in pain from not pooping. She finally curled up on my lap and fell asleep. 

I looked at her and held her right as tears ran down my face. Here I have a beautiful child of God right in front of me. Someone I can’t hold tight enough and yet can’t get a break from either. 

I sighed as I thought of what I wouldn’t give to potty train Isaac and yet, wondered what I would have done with two kids trying to run back and forth to the bathroom over and over and over. 

Because I don’t get the luxury of feeling blessed that I only have one. I just get guilt. 

I can’t feel grateful that I’m only worrying about one hand instead of two–or more. 

I so I learn to live with the guilt. 

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What Easter means to me

I’ve been told that Holidays become extra meaningful after you lose someone. For me, Christmas isn’t really the same after spending so many years making cookies with my Grandma. She had a gift for baking and certainly her recipes  are the best there are out there. Her tradition fell down to her two daughters and after she grew senile, I made cookies with my Aunt and my mom. Now that tradition has become something my mom does with her grandkids. Traditions keep memories alive and can be welcomed, yet painful when holidays approach. Losing a loved one around a holiday can infuse those memories with greater emotion, leaving a person exhausted from the emotional roller coaster they’ve been forced to ride.

I lost my son just weeks before Easter in 2015. To make matters worse Easter fell just days after his initial due date. The first Easter I experience was the hardest of all the holidays during the first year after his death. Depression enveloped me. Even though I knew the message of the holiday should have brought me intense joy–for some reason the thought of Christ’s resurrection reminded me that death is a very real part of our mortal experience.

I remember the tears didn’t stop that day. The many choruses of “hallelujah” just could not penetrate my soul. My soul was crying. I wanted my own personal Easter Sunday with my baby boy.

It’s now a year later and I watched this Sunday approach with much anticipation. The weeks prior gave no indication that this holiday would be a repeat of last year and so I excitedly made plans for our family’s celebration. We colored eggs and Audrey even wanted to “color” an egg for Isaac. She insisted his egg was to be white and just sprinkled glitter on it. I wonder if she’ll ever grasp how incredibly perfect that is. On Sunday,  I even agreed to teach in Relief Society and spoke of my son.


It wasn’t until later than night when the quiet of the Holiday settled in that I started to feel the all too familiar pricks inside my heart. Perhaps its the memories now associated with this Holiday, or perhaps it’s just the fact that to me, Jesus’ Empty Tomb symbolizes my empty arms.


He is Risen is by far the greatest news that any grieving family can receive. Because our Savior overcame death, everyone receives the gift of resurrection. Everyone. Including little babies. Because my Savior completed his mission, I will be able to hold my son in my arms and kiss his physical face.

However, because of this mortal journey that we have all accepted to experience, death is something that must happen first. Death in its soul ripping, heart wrenching, memories stealing way.Isaac Birth Story-55 Unfortunately I cannot think of the resurrection without remembering that fact. I cannot forget that for my son to be resurrected that he first had to die. His life was cut so incredibly short here. I am left with empty arms, like Mary was left with an Empty Tomb and her grief for her loved one. I wonder if it was her mortal grief that blinded her from truly seeing the miracle of the situation at first, just as my grief is blinding me. Perhaps it is pushing through my grief will allow me to see with more understanding eyes.

What was it that allowed her to see her Savior in his resurrected state? What will allow me to get past my grief to see the beauty of this message? Will Easter always be sorrowful? Will I get to the point where I can find the beauty of it?

Although it seems like my dark, terrible Friday will never end, I sense my son as I question. I feel him near in a way that is so specific to angels. I feel his love and I know that he loves me with pure Christlike love. He is telling me to be patient, for my Sunday will come.

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Trisomy 18 Awareness Day

Today is Trisomy 18 Awareness Day. It was chosen specifically because it’s 3/18–to represent 3 chromosomes on the 18th chromosome.

A year ago today, I had no idea that this day even existed. My world was still spinning, my body was still in physical pain from giving birth and my heart was still so raw.


At Isaac’s grave at his 1 yr Angelversary

As I’ve had a year to reflect on how I want Isaac’s story to continue, I’ve come to realize that I don’t have an answer. Sometimes the story is about me. Sometimes the story is about Isaac, sometimes its about Audrey or my husband and often its about our family as a whole.

Today it’s about the disorder that took his life. While so much of this information I might have shared before, I am hoping that sharing it again may be helpful.

What is Trisomy 18?

“Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction.  When this happens,  instead of the normal pair, an extra chromosome 18 results (a triple) in the developing baby and disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth.  A Trisomy 18 error occurs in about 1 out of every 2500 pregnancies in the United States and 1 in 6000 live births.  The numbers of total births is much higher because it includes significant numbers of stillbirths that occur in the 2nd and 3rd trimesters of pregnancy.

Isaac Birth Story-54

Most of Isaac’s skin had peeled away due to being in the womb so long after passing.

Unlike Down syndrome, which also is caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with more medical complications that a
re more potentially life-threatening in the early months and years of life.  Studies have shown that only 50% of babies who are carried to term will be born alive, and baby girls will have higher rates of live birth than baby boys.

At birth, intensive care admissions in Neonatal Intensive Care Units (NICU’s) are routine for infants with Trisomy 18.  Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
IMG_8951Some infants will be able to survive to be discharged from the hospital with home nursing support to assist with care by the parents. And although 10 percent or more may survive to their first birthdays, there are children with Trisomy 18 that can enjoy many years of life with their families, reaching milestones and being involved with their community.  A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independently without full time caregiving.” Source

Isaac’s Story: 

Isaac was diagnosed with full Trisomy 18 after an amniocentesis had been performed. They showed us his full DNA make up and there was no denying that there was a full extra 18th chromosome. It was a very sobering day. (you can read about it here). While we had every indication that Trisomy 18 would be the outcome, it was still one of the hardest days of  my life to come to terms with the fact that the baby you had created wouldn’t live life to the fullest extent. After many scary visits to the hospital Isaac was delivered on Feb. 26th, 2015 weighing just over 3 lbs. (You can read about his delivery here).
Isaac Birth Story-113

I am so grateful that the doctors in Isaac’s journey were so great. They gave us so many choices and ultimately always left it up to us.

Isaac Birth Story-45

Right after I delivered Isaac and our Doctor told me I had delivered a little boy.

It was hard to make those decisions and sometimes I wished the doctors would just tell us what to do.Now that I am past all the emotion of it, I am grateful that every choice was ours. (You can read more about our conversations with doctors here  and here).

Why spread awareness? 

The cause of Isaac’s death will always be Trisomy 18. Often it’s so easy to just say that Isaac was stillborn, but his story has SO MUCH more to it.  Like so many people in America, I had no idea what Trisomy 18 was. I didn’t even know that Down Syndrome was actually Trisomy 21, another form of Trisomy.

What is the point of Trisomy 18 awareness day? What does it do? If we can’t stop it (yet), if most babies with Trisomy 18 die before some mothers are even aware that their baby even had trisomy 18, then what is the point?

There are so many reasons.

Did you know that 86% of those with confirmed Trisomy 18 during pregnancy choose to terminate their pregnancy? Source

Did you know that almost 100% of Trisomy 18 babies are encouraged to be aborted? Source and source

Did you know that despite having a high mortality rate that  “approximately 50% of babies with trisomy 18 live longer than 1 week and about 5-10% of children beyond the first year.”

Did you know that most doctors refuse to perform life saving resuscitation on babies with known Trisomy 18? Source (We ran into this problem. We were told that at the hospital where Isaac was born, they didn’t know if there would be a surgeon willing to operate on Isaac’s heart. With no operation, even if he had been born alive, he would have died).

Did you know that even when trisomy babies are born alive, there are still actions taken to try to end their lives? Source and Source

I’ll leave you with one more point to think about. A question was asked on one of the websites I was reading today.

“What if Trisomy 18 is in the same place as Trisomy 21 was just 50 years ago?

What if, instead of the accepted medical view of counseling to not treat, doctors instead gave parents the option to treat their child?

What if then, just like with Down syndrome, some children with Trisomy 18 would be given a chance at life and we could really see what a child with Trisomy 18’s life could become with proper care and support?”

I am hoping that talking about it will spread awareness and in turn help other families not feel so alone. I hope they understand that while the diagnosis is heartbreaking, that there are still so.many.choices available to them. I hope that by spreading awareness that Trisomy 18 babies can get the care and support they need, if the family so choses. I hope that by spreading awareness there is more understanding, more love, more hope and more support.

What can I do?

So often a cause touches a person’s heart, but they are left with no way of helping or knowing what to do. Let me give you a few suggestions.

Donate to a cause:

You can donate to here
Donating blankets, preemie outfits etc to hospitals
Donate for funeral costs
Donate for a headstone


Preemie outfits my sister-in-law donated to the hospital in honor of Isaac’s first birthday


Share this blog post or other blog post
Share pictures
Share your feelings.


A picture a friend made in honor of her Trisomy 18 baby girl.

Help care for those around you who might have or have lost a Trisomy baby.
Wear Purple or Light Blue on March, 18.


Love we received on Isaac’s first birthday



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Hold your head up high.

With Isaac’s Angelversary (the day he became an Angel) coming up tomorrow I have had many people asking how I’m doing. I can’t even express how much this kind of support means to me, especially with being apart from Aaron. The truth is, how I respond depends so much on how I am feeling at that moment. It’s been very hard to describe the emotions I’ve felt. At times I’ve been full of gratitude, at other times I’ve been so angry. Sometimes I have felt deep sadness and such a deep void in my life. I have come to realize that there are still some things that I haven’t dealt with. Even with how open I’ve been, there are still things that I have avoided because it just hurts too much. One of those things being getting Isaac a headstone. I am not sure why, but even typing it makes my heart hurt so much that I can’t bare the thought of it. I can’t handle the thought of my baby’s name on a piece of stone to represent his dead body. For similar reasons I have rarely visited his grave. This very obvious reminder is just too hard. 

Each Memorial Day my husband’s family visit their Daddy’s grave. We decided to bury Isaac next to Aaron’s daddy and so each Memorial Day, he will get visited as  well. It is now my goal to give Isaac his headstone before we all go visit him in May. I had intended to have it done a long time ago, but I had no idea that I was avoiding it. Now that I have come to terms with the fact that I was avoiding it, I hope I can address the emotions that led me to avoid it in the first place, hopefully helping me find and feel some closure.

I also have some regrets for not visiting his grave more often while I have been so close and while I was going to Las Vegas frequently because of my braces. Now we’re moving to Texas and I won’t have the opportunity to visit him. That’s going to be a hard thing to come to terms with.

It’s been very interesting to see how I’ve changed over the past year and half (since I fond out about Isaac’s diagnosis). Sometimes I’ve done well and other times I haven’t. I’m sad to say that there was a good amount of time that I was just plain miserable. It been interesting to see where I am today.

Recently, I was asked to direct and choreograph the musical HONK! It’s a musical based on the story of the Ugly Duckling. I was in this musical in college, and while I felt the production was excellent, I really hated my part and experience in it. I was less than thrilled to be involved with the musical again. However, I felt very prompted to go and direct this show. As I listened to the music, it became very evident that this show was going to be very healing for me.

There are moments, lines, songs and themes of the show that just hit so close to home. 

  So close, that even after seeing the show several times, they still bring powerful emotions. The duckyard is so cruel to Ugly, the main character, because of his obvious differences. There is a line that mentions “sometimes, it is kinder, if some eggs never hatch”. That line gets me every.single.time. I think of my son and how so often when people learn of something “different” with their unborn children  they decide to terminate the pregnancy. I want to be clear that I’m not judging, just expressing how it makes me feel.  I wrote a whole blog post on abortion if you want to know more of my thoughts, but in the context of my experience and the show, that line stings.

Ugly unexpectedly finds himself lost from the duckyard and his family.  He tries to find his way back, but only ends up more lost. His mother soon figures out he’s gone and leaves to search for him. The character of Ida resonates so closely with so much of what I felt.  

 How she defends her son, how she loves him regardless of what he looks like and how she risks everything to find him. As I watch the show, I feel she is singing the words of my heart. The song “Every Tear a Mother Cries” captures the heartache so perfectly.

Every day seems to be
more empty than the last. 
Everywhere the sun once shone
a shadow has been cast. 

Every moment that your gone, 
is a moment dark and grey
Every tear a mother cries, 
is a dream that’s washed away

Ugly sings a song about being different and my heart breaks for him. Even though I lost my son at birth, had he lived he would have been severely mentally handicapped. He would have been called terrible names, maybe not to his face–or even in front of me, but it still happens. I cringe every single time I hear someone called someone or something “retarded” or tease that “they must be mentally slow”. Sometimes I can’t help myself and say something–other times, I just let it go knowing the person meant no harm by it. But it hurts all the same.

Another part that resonates so accurately with me is the moments when the chorus sings. They are Ida’s friends, yet have no idea how to sympathize or support her. I debated saying this out loud–because I have felt support and sympathy from my friends. It’s still hard for everyone, even your closest friends, to carry that kind of grief everyday. Sometimes they say terribly hurtful things, perhaps trying to be helpful. At times, I felt very much like Ida, isolated, apart from my husband desperately trying to cling to any kind of hope.  Again, the lyrics speak volumes as the chorus sings about Ida.

“Poor Ida has our sympathy
She looks so sad and gloomy
But looking on the brighter side, her nest is now more roomy.
We find it rather difficult to say consoling things
Tonight the ugly duckling sleeps beneath an angels wings

One of the main themes of the musical is showing how it takes place over the course of a year. The seasons come and go until we end back up at spring again where the Ugly duckling has turned into a beautiful swan. The lyrics do a great job of subtly referencing each season. It shows the desperate nature we can feel after hoping for something for so long.

“As each season slips away, sadly there’s a trend
Common sense would seem to say
There’s no happy end

This part has so many meanings for me. I think of the last year and my different “seasons”. I think of how I have grown and changed. I look back at myself a year ago and am amazed that somehow I got through it all.

At one point in the show, Ida collapses, assuming her son has died–frozen to death under a blanket of snow. Her grief is real and something that I so relate with. She sobs over him wondering what his little life meant? “What was it all for? What was the point of your little life?” she questions. As she weeps over the loss of her son, the mother and father swan come and comfort her. They recognize her grief and acknowledge it. 

I don’t think I will ever forget desperately wanting to hold my sweet baby boy alive. I prayed, hoped, wished, wanted, dreamed and longed for that moment. When his little heart stopped before I could hold him, I felt so much like Ida–desperately  clawing at the snow, exhausted from the effort it took to sustain that kind of hope. It felt pointless. What on earth was it all for.

It wasn’t until I was watching the show the other night for the millionth time that something clicked for me. I watched Ugly emerge from the snow, beautiful and perfect. No longer flawed, dressed in white. I saw my son as a resurrected being. Perfect and beautiful.

At this time,  the swans ask Ugly to come with them. He is torn between staying with him mom and going with the swans. (scene was edited for this post)

Father Swan: Well, now you can come with us and learn our ways.
Ugly: And my mother? Can she come too?
Ida: Of course I can’t…..I can’t teach the ways of swan….your place is with the swans now…(to Mother Swan).Look after him for me, won’t you?
Mother Swan: Good-bye, my dear. This must be very hard for you but I promise he’ll be safe with us.
Ida: I’m sure he will (Gives Ugly a final hug), Well, go on then! Let’s see you fly!

As I watched the swan family exit the stage all in white–ready to take flight,  I can’t help but see my son with our loving Heavenly Parents–promising to take care of him until I can see him again.

Ida then sings a reprise of the song Ugly sang earlier, her words echoing in my heart.

He was different
He was different from the rest. 
Of course he can’t belong with me
I know, I should have guessed
He wasn’t mine to mother
He wasn’t mine to rear, 
Another dream gets washed away
Another dream, another mother’s tear.

The show ends on a much happier note than my story does, and I could go on and on and in more depth how this show has touched me, but I feel I have written quite enough already. I have loved being able to watch and heal as so much of my story was presented on stage.

Spring has always indicted new birth. Resurrection.I have loved spring for that exact reason. The earth literally comes alive after being put through the harshness of winter. Every season is needed and every season contributes to the growth and rebirth that happens each spring. My “seasons” have been especially rough this year and my winter especially harsh, but as I come back to where I started, I can see the person I have become. Each season has helped mold me into the person I am today. I am ready to be reborn. 

If you are near the area, I truly hope you take the time to come see this production. It is a beautiful story that is beautifully told.

Just beneath the surface,
you may struggle to get by,
but nothing can deter you
If you hold your head up high. 


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Endless Night

I lay motionless beneath the covers of my bed, hoping that if I don’t move, my daughter won’t know I’m awake yet. Our little room is dark and I have no idea what time it is. I’m wide awake, I have been for awhile. I know this lack of sleep will catch up with me later. The guilt sets in. I hate that my daughter always seems to catch the brunt of my grief. My inability to cope with life. I pray the silent prayer that has been my constant companion for over a year.

“God, please, please, let her survive this. Bless her to know that I love her and care for her, even when I am incapable of showing it”

The effects of yesterday are still weighing on my chest and my emotional hangover is leaving me nauseous, nervous and unsettled.

A little curly mop of hair finds its way to my chest and this living angel settles in. I hug her tightly not taking for granted that I can feel her breathing underneath my arms.

Without warning, I feel fresh tears form in my eyes. Sunlight is fighting to get through the blinds forcing me to acknowledge that today is a new day.

I can’t move. My senses heighten as a result of the paralyzation I feel take over my body. This isn’t the first time I’ve found myself wide awake before the sun breaks the darkness. I get lost in my thoughts, as I often do on mornings such as this. However, this morning is different.

I’d been feeling the effects of grief for a long time. That, compounded with moving, being “homeless”,and a geographic single mother has left me more than exhausted, it has literally drained every ray of sunshine form of energy I had. I knew I was desperate, but every official cry of help I made was met with red tape, dead receivers and unanswered voicemails.

“Please God,” I plead. “What are you trying to teach me? Please, I need your guidance”

I can’t decide if I can’t hear the answers, or if the answers haven’t come. I throw myself into projects, events and work to help distract me from the very real anvil weighing on my heart. It’s a weight no one asks about anymore. Maybe they think it’s gone. Maybe they think it should be gone. Maybe they’ve asked enough and they don’t want to talk about it anymore. The silence isn’t confusing to me. I know how they feel. I have the same whirlpool of emotions. The desperate need to talk, yet not knowing what to say.  Saying the same things over and over again and growing tired of the constant refrain.

In fact, that’s it. I’m

The curly ball of energy moves and I hear a muffled “mama, I’m hungry”. Those are always her first words in the morning. I can’t help but smile, as I know she gets it from her daddy–both reminding me of his absence and his presence in our daughter. I feel a push at my back and my arms and legs regain some of their strength allowing me to make my way to the small fridge located in the bathroom to get her some yogurt.

My thoughts are still full and foggy as I attempt to evaluate myself. Audrey interrupts me asking to listen to music on my phone (watch youtube). I dish out her yogurt (wondering if it’s ok that a 3 yr old has gone through almost 2 lbs of greek yogurt in less than a week) and debate about letting her watch youtube. I finish my self evaluation and determine I don’t have the energy or emotional power to come up with a better option.

I find myself reciting my ever constant prayer as  I turn on a favorite of hers “Please, God, I’m doing the best I can, just watch over her”.

I sink back into bed, hoping that by doing so, somehow I’ll be able to fall back asleep. A small crack in the blinds shines the tiniest sliver of light. The annoying glimmer refuses to allow slumber so instead I replay my appointment with a grief counselor from the day before. “Was it a good decision? Is it even helping?” At this point, all I feel is exhaustion of going over more details of my son’s death than I have said out loud in a long time. Every emotion. Every pain came flooding back as I recited the events over the past year. The anger that I thought I had worked through was so present. Angry, so angry, that I would never know my son. Never know what makes him HIM. Angry at all the angel mothers that find comfort in the memories they have with their child.

Music fills my head, and the lyrics of a song that has brought me more comfort than any other, articulates my emotions.

“When will the dawning break
Oh, Endless Night.
Sleepless I dream of the day

When you were by my side,
Guiding my path
Father, I can’t find my way”

I don’t want to be angry. I take a deep breath and try to find God. In the silence, I know that He’s there. I search for the words of scriptures, hymns, prophets and friends. Searching. Scavenging my memory for recent conversations and scripture studies. My studies have become so personal lately. I used to like to share insights and discoveries. It kept me accountable and thoughtful. But now, I find opening up adds to my exhaustion. For now, this study time is my one on one time with God.

Sunlight has now found it’s way past the blinds and has made it’s unmistakable mark on the floor on my room. I stare at the light, desperate for the warm that it brings, yet terrified to get burned. I am learning to trust. I learning to have faith.

Not surprisingly, the song  that entered my head continued and I start to hum the tune.

“I know that the night must end
and that the Sun will rise
and that the Sun will rise.

I know that the clouds must clear
and that the sun will shine
and that the sun will shine”

I lay in bed staring at the ceiling as imitation voices of Elsa and Anna circle around me. The words of the song repeat and I am given the choice of either allowing them to heal me or pushing the song aside.

Light has completely filled my room making it abundantly clear that staying in bed is going to be near impossible. I reflect on the words of the song playing in my head, trying to believe the profound truth found there.

When we go through tragic, life altering, soul searching events, we have the choice to either search for God’s presence or look for His absence. I am sad to say that I have done both. However, these events allow us to become incredibly close to the spirit, as so many of our emotions and senses become numb.

Laying in bed this morning, numb, hurt, angry and exhausted, God showed me that He is still there. He is not tired of the topic or uncomfortable with the conversation. He knows that I am exhausted, both physically and emotionally and very near spiritually. In a sacrifice that becomes especially relevant to a bereaved parent, He sent His First Born Son to become physically, emotionally, spiritually, mentally exhausted so we would have arms to fall into.

The tender mercy of the Sun rising was not lost on me this morning. It was a direct answer to the prayers of my broken silent heart.

“I know, yes I know that the Sun will rise”

I know that the Son has risen.

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Grief 1 year later.

Today I posted on this blog for the first time one year ago.

I remember that day so well.

I just couldn’t keep in all my emotions anymore and explaining our situation over and over again was just as exhausting as it sounds.

I haven’t written in a while and some of you might mistake my absence as moving on and getting over it. That would be wrong.

The truth is, I have written, but I haven’t posted anything, because I can’t seem to finish it. The words don’t flow like they used to. Perhaps I won’t even finish this post today.

The fact is, grief gets harder the longer it’s been, not easier. 

I guess it makes sense why at first it doesn’t seem that bad. There is a lot of attention and *hugs* and cards and flowers and gifts and beautiful words. All of those things are needed and welcomed. But they can’t last forever. And somewhere around 5 months (for me at least), all the warmth from comforting friends had worn off and I was left feeling very cold.

And very alone.

What also makes grief so incredibly hard is that everyone experiences it so differently. There is no way to really understand what someone else is going through–even if you have experienced something very similar.  Perhaps that makes what our Savior did for us in Gethsemane even more amazing. He didn’t just suffer grief and pain and loss in general, He suffered individual grief and pain and loss. He suffered MY grief. He suffered Aaron’s grief. He suffered everyone’s individual grief. It’s all different and He understands it so specifically.

Basically the past 5 months have been harder than the first 4 months were. I don’t have as many “sad” days. My grief is showing up in other ways. Lack of patience, insomnia, extreme exhaustion, anger (over non-related Isaac things), depression, anxiety and just the constant state of being overwhelmed. Things that didn’t used to phase me are a BIG deal now. It’s like my body can’t handle any more bad news.

Since finding out about Isaac, I opened and closed two main stage productions in which I both produced and directed, then I moved my family internationally when I was 30 months pregnant. It wasn’t an easy move, our flight was delayed over 24 hours and we stayed the night sleeping on airport hard benches.  I visited the ER before we even had a home. I was in the hospital trying to decide if I was going to go in for an emergency C-section while all of our stuff was being delivered from Korea. I discovered my son’s heart had stopped before I had sheets on my mattresses. Buried my son in a state I have never lived in. Moved again–this time apart from my husband. Wanting another child, but having to realize it’s not in God’s timing–knowing the wait is going to be awhile before we can try for a child again.  Dealing with a little toddler who couldn’t figure out why her whole world had been flipped and turned over yet AGAIN and didn’t understand why daddy didn’t come home at night–while often crying to go “home” and trying to explain that “home” is Grandma and Grandpa’s basement for now. Dealing with the disruptive behavior that  comes along with stress in a toddler.  Having to be apart for Holidays and birthdays, which might be ok under normal circumstances, but this year it was a bit rough. Finally feeling like you have a safe place only to have major tragedy strike where we are staying and being forced into survival mode once again. Seeing Facebook posts of friends who are pregnant and wondering why God blessed you with a child He asked to come home and wondering why you can’t get pregnant. Finally getting to be reunited as a family for Christmas, but seeing the effect it’s having on your daughter to be with her Daddy again. Seeing her meltdown when he leaves to just use the restroom–knowing it’s because she doesn’t know how to handle all the feelings and emotions going on inside of her.Seeing her cling to him every possible second–and wanting to do the same thing.  Desperately wanting to forget everything that has happened to us this year and just wanting to have a normal stress free Christmas and knowing that is asking for a miracle.

You see, death changes you. Grief doesn’t ever go away. You just learn to cope differently. There is no magic number of days, months or years that make you into a normal human being.

When tragedy hits–no matter where, it hits me hard. As much as I wish I didn’t, I take it personally. When Paris got hit, I sat shaking and crying in my room for a couple hours before most people even knew it had even happened. I had lived there, walked and talked and sat in the homes of those dear people. I cried out loudly to God “why?”.

Then day after day it seemed as if another Army Air craft had gotten struck down. I lost it. Again. There was nothing left in my system to even cope with that kind of news. News that was WAY too personal. Being separated didn’t help either. There was no kissing him goodnight to help with the anxiety. It just built and built.

There are blessings! Make no mistake, I look for God’s hand in my life. I started a gratitude journal, I pray with real intent in gratitude and for healing.

I make myself present on Social Media to force me to engage and be a part of something. I started a business and I LOVE what I do. It literally gets me out of bed everyday when nothing else seems to. Posting positive things and asking others to join me on that road is more than just a job–it’s my life preserver.

Things like that  help, for sure, but nothing that can cure it. Not yet. Exercise helps. IMMENSELY. It is pure therapy most days. But what happens on the days I’m so depressed and overwhelmed that I can hardly function. Well, I can tell you not much happens. I exists and hope and pray that God takes care of my little girl while I am so numb.

I’m terrified to talk about it anymore, scared that people just don’t want to hear it anymore. Thinking “Oh my gosh, can’t she just MOVE ON?” It’s hard to think that maybe people don’t want to hear from you anymore, because they can’t handle your life right now.

Perhaps that’s the depression and anxiety talking, but with those as my constant companions, it’s my reality.

I wish I had some heart warming conclusion on what the moral of the story is, but I don’t.

I am a work in progress. I am struggling. I am doubting. I am barely keeping above water.

I know I have failed some peoples expectations of me. I can only do what I can do. I can’t tell my story and situation to everyone and so I just pray that perhaps God will soften their heart towards me and my mistakes.

So I will end with this. With all my doubts and fears and questions and “why me”—I know that my Savior loves me. Deeply. Personally. He sees me aching and crying and desperately asking for a break. You see, I asked Him to make me like Him. I asked to walk on water, and right now I am drowning–but I know My Savior will extend His hand and reach for me. When that happens, miracles will happen.

Miracles don’t happen in the ordinary circumstances, miracles are grown and bred through the impossible.

I will continue to wait for the miracles.

I know my God delivers.

I will wait to walk on water.


Pulling Peter from the Water 

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