August

Last Saturday was Aubrey's birthday. She would be two years old.

We took a trip to Salt Lake City, stopping in Kaysville on the way. When we went to the cemetery, we found that Daniel's grave marker had been set. It looked quite freshly done.

As we sat there, the names of our two children carved in stone before us, we stopped to wonder. Is this really our life? Can this be happening? I couldn't stop the thought, my babies' bodies are down there...

I have to say I also considered how much strength we have been given by the Lord Jesus Christ and His gospel. Because we fully believe His teachings that death is not the end, we know that our children are not gone.

We know that their bodies are dead, but their spirits live on as part of our family forever. Nothing can take them away from us but our own disobedience. This drives us to do and be our best every single day. It drives us to lean more heavily on the arm of God than we ever have before.

So we carry on.

It's amazing a heart can still beat with so heavy a burden upon it, but here we are. I cannot fathom the pain that would come if we didn't have faith in the gospel.

Silver lining: we are SO grateful that we got side-by-side grave sites for them.

In Salt Lake, we went to the Ronald McDonald House to donate our pop tabs. Davis' co-workers contributed significant amounts, as well as other family and friends. Thank you all for helping us with this! It's a small thing, but it makes a difference - to us and to the families who use the RMHC facilities.

Together we donated roughly 34,538 pop tabs, weighing in at over 20 pounds! RMHC will be able to recycle these pop tabs as a source of funding for the charity.

If you haven't started already, collecting these tabs is a simple, cost-free way to contribute to your community and impact the lives of families with sick children.

One final thought: I came across a poem a while ago which resonated with both of us. It is called 'Ugly Shoes' and I want to share it to promote understanding of life with grief, and compassion between us all.

I am wearing a pair of shoes. 

They are ugly shoes. 

Uncomfortable shoes. 

I hate my shoes. 

Each day I wear them, and each day I wish I had another pair. 

Some days my shoes hurt so bad that I do not think I can take another step. 

Yet, I continue to wear them. 

I get funny looks wearing these shoes. 

They are looks of sympathy. 

I can tell in other's eyes that they are glad they are my shoes and not theirs. 

They never talk about my shoes. 

To learn how awful my shoes are might make them uncomfortable. 

To truly understand these shoes you must walk in them. 

But, once you put them on, you can never take them off. 

I now realize that I am not the only one who wears these shoes. 

There are many pairs in this world. 

Some are like me and ache daily as they try to walk in them. 

Some have learned how to walk in them so that they don't hurt quite so much. 

Some have worn the shoes so long that days will go by before they think about how much they hurt. 

Nobody deserves to wear these shoes. 

Yet, because of these shoes I am a stronger human. 

These shoes have given me the strength to face anything. 

They have made me who I am. 

I will forever walk in the shoes of a parent who has lost a child.

Author unknown 

Missing

This Independence day we went to a barbecue with a friend's family. We had burgers, hot dogs, homemade angel food cake, and s'mores bars. The food was fantastic.
After dinner, there were sparklers and increasingly large fireworks.
As my husband and I sat on the back row, I noticed how beautiful the scene was. Generations of families talking and playing, good food, great friends... And yet my heart felt so heavy.
Davis asked why I was so quiet. I told him, it's just too beautiful. It's so good, so normal.... And it's something we'll never have.
His face grew solemn and he nodded. "No matter what, they'll always be missing."
This fourth of July, we are outnumbered by our deceased children.
We do our best to keep enjoying life, but no matter what, they'll always be missing.

Rainbows

**Written 5/7/2019 10:40AM. Published 12/10/2023 11:11AM**

I don't know if I'll ever post this, but I need to write it out.

I read a blog post today from a special friend of mine. She lost her first baby just two weeks before his due date. He was stillborn.

Ever since I met her, I was touched by her solid faith in the midst of such an insane level of anxiety that comes with pregnancy after loss. She keeps a blog with stories from her life, cute things her boys do and say, and occasional reminders of the one waiting for them in the afterlife.

She writes about how her three living boys are 'rainbow babies' - joy that comes amidst storm clouds of despair. They are beautiful boys.

Daniel was to be our 'rainbow baby'. We had already lost Aubrey, and no one anticipated a second infant death. It was next to unheard of. Some people get rainbows. Some people have to wait. I try not to be bitter. I'm not always successful.

I've been reading a lot about grief lately - it seems to pop up everywhere. A TED talk from a woman whose young husband died of cancer. A TED blog post from the same woman. Articles shared by various article-sharing sites. Everyone talks about how it never gets better. You never move on. The pain never leaves. The wound never heals.

It's all true.

In my post a few weeks after Daniel died, I shared an article about grief. In part, the author compares grief to a piano that is suddenly dropped into the middle of our lives. It isn't going away, so we have to learn how to incorporate it into our daily life.

I find myself running from thoughts about children. I don't want to be with my friends who have children. Some days I do, and seeing their little faces brings me healing. Other days, I can't bear the thought of seeing them. Sometimes I wonder, am I crazy?

No, I am grieving. I stop and look at the calendar once in a while, lift up my view from focusing on trivial things to avoid looking loss in the face, and I realize that it has barely been three months since Daniel passed. Three months! That's it?! It feels like a lifetime. The days are heavy and long.

I'm back in school now, pursing a master's degree. It feels fake. This can't be my life. Why would I go back to school? I have children...

Some people give a reaction of relief - as if they are thinking oh, good! She's moving on. She'll be just fine now. 

What they can't realize is how important grief is to my soul. I like it down here. Down here is where the echos of my children's lives are the loudest; down here is where I feel most whole inside. Up there, on the surface, going to school and seeing Davis off to work and cooking dinner and sleeping, that is all so shallow, so fragile. but down here, in my low-lit, deep den I feel security. I feel comfort. I feel like I have children - like they're really not that far away.

So if some days I don't want to come out, don't show up at social events, or don't seem truly present if I do show up, don't feel like you have to fix me. I just need to spend some more time in my quiet place with my family.

Pianos

It has now been a full two weeks (and then some) since our son Daniel passed away.

Some days are unbearable - as if my heart has turned into a black hole, draining me of willpower, energy, and life; threatening to collapse my entire world.

Other days, I can go through his pictures and remember the sweet moments that we shared together and feel a more peaceful, longing sorrow. Still deep, still painful, but with some sweet mixed in with the bitter.

Grief is unique like that. No two people experience it exactly in the same way, and each person can experience it differently on different occasions. Also, grief never goes away.

A beautiful friend of mine shared an article recently on her blog (I've told some of you that this was coming - here it is! ;) ). This article illustrates in a clear and simple way what life after loss can feel like. It's a little long, but the imagery is beautiful.

It has been a truly humbling experience to see how many people were reading our blog posts to see how we were doing while Daniel was in the hospital. Each one of you has been affected by our story - by Daniel's story.

Some friends have commented to me something like, "Well, I know it's nothing compared to what you guys are going through, but, (embarrassed) I needed something...some comfort..."  Please know that there is no shame in grieving another's loss. This is the realization of the miracle of God's children being 'willing to mourn with those that mourn'! Your pain is real. Your perception of it's comparative size does not change the reality of it. Thinking that my pain is worse than yours does not make your pain any less.

And so, I invite you to read this article for your own understanding and healing. Maybe something will resonate with you and bring comfort when you need it.  

STEVEN KALAS:

When you lose a child, grieving is a lifelong experience

When our first child is born, a loud voice says, “Runners, take your marks!” We hear the starting gun and the race begins. It’s a race we must win at all cost. We have to win. The competition is called “I’ll race you to the grave.” I’m currently racing three sons. I really want to win.

Not everyone wins.

I’m here at the national meeting of Compassionate Friends, an organization offering support and resources for parents who lose the race. I’m wandering the halls during the “break-out” sessions. In this room are parents whose children died in car accidents. Over there is a room full of parents of murdered children. Parents of cancer victims are at the end of the hall. Miscarriages and stillbirths are grouped together, as are parents who have survived a child’s suicide. And so it goes.

In a few minutes, I’m going to address Compassionate Friends. This is the toughest audience of my life. I mix with the gathering crowd, and a woman from Delaware glances at my name tag. Her name tag has a photo of her deceased son. My name tag is absent photos

.

“So … you haven’t … lost anyone,” she says cautiously.

“My three sons are yet alive, if that’s what you’re asking me,” I say gently.

She tries to nod politely, but I can see that I’ve lost credibility in her eyes. She’s wondering who invited this speaker, and what on earth he could ever have to say to her.

My address is titled “The Myth of Getting Over It.” It’s my attempt to answer the driving questions of grieving parents: When will I get over this? How do I get over this?

You don’t get over it. Getting over it is an inappropriate goal. An unreasonable hope. The loss of a child changes you. It changes your marriage. It changes the way birds sing. It changes the way the sun rises and sets. You are forever different.

You don’t want to get over it. Don’t act surprised. As awful a burden as grief is, you know intuitively that it matters, that it is profoundly important to be grieving. Your grief plays a crucial part in staying connected to your child’s life. To give up your grief would mean losing your child yet again. If I had the power to take your grief away, you’d fight me to keep it. Your grief is awful, but it is also holy. And somewhere inside you, you know that.

The goal is not to get over it. The goal is to get on with it.

Profound grief is like being in a stage play wherein suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move, it impedes your sight lines, your blocking, your ability to interact with the other players. You keep banging into it, surprised each time that it’s still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.

The piano changes everything. The entire play must be rewritten around it.

But over time the piano is pushed to stage left. Then to upper stage left. You are the playwright, and slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story of your life.

You learn to play that piano. You’re surprised to find that you want to play, that it’s meaningful, even peaceful to play it. At first your songs are filled with pain, bitterness, even despair. But later you find your songs contain beauty, peace, a greater capacity for love and compassion. You and grief — together — begin to compose hope. Who’da thought?

Your grief becomes an intimate treasure, though the spaces between the grief lengthen. You no longer need to play the piano every day, or even every month. But later, when you’re 84, staring out your kitchen window on a random Tuesday morning, you welcome the sigh, the tears, the wistful pain that moves through your heart and reminds you that your child’s life mattered.

You wipe the dust off the piano and sit down to play.

Copyright: Las Vegas Review-Journal

Steven Kalas is a behavioral health consultant and counselor at Clear View Counseling and Wellness Center in Las Vegas. Contact him atskalas@reviewjournal.com.

A Final Daniel Update

Daniel
Lived 50 Days
or 39 Weeks, 6 days


Brave Daniel has gone home.

He quietly left this mortal existence around 4:25 pm on January 29, just the day before his due date. While Daniel is not physically part of our every day life now, we are so grateful to know that he is and always will be part of our eternal family.

Daniel's unique genetic condition proved, in the end, incompatible with life. How, then, did he live for 50 days? We believe that he was allowed so much time because the Lord saw fit to give it to him and to us; this is a blessing we will be forever grateful for.

To the many who offered prayers in our behalf, thank you. Please do not feel that your pleas for a miracle were ignored by the Almighty. We do not know why things had to go this way for our family, but we do know what a sweet experience it has been to spend time with Daniel. He has enriched our souls and our family in beautiful ways; and we had the immense pleasure of seeing him well enough that we could pick him up out of his hospital bed ourselves - without a nurse's help! We could change his diapers, massage his hands, talk to him, and see him respond to our voice.

These are the miracles.

The grieving process is a lifelong one, and things will never be the same. It doesn't get easier the second time around, and it is never something we will, or will ever want to, get over. Now, when we long for Aubrey every day, we'll long for Daniel too.

Thank you, each one of you, for your love and support.
We pray our family can be together soon.

More Updates..

(Guest Post:)

Day of life 47
Corrected age: 39 weeks 3 days
Weight: 2075g (4lb 9oz)

The Doctors are still trying to diagnose what is causing this sudden turn in Daniel's health. In the past few days, they have cultured two samples of his blood looking for growth and infectious markers both of which came back with no results. They have taken two urine samples which did not show anything out of the ordinary. They also took a nasal swab to test for 15 of the most common types of viruses - all of which came back negative.

They have done X-rays on his head and lungs, a BNP on to test for heart failure, an echo cardiogram to look at heart size/function all of which had findings, but all minor and definitely nothing significant enough to explain his current difficulties.

He has had multiple machines running to monitor his neurological activity to look for seizure like activity, which came back - again - as a minor concern.

In consulting with the Doctor, they are still unsure of what the underlying issue may be. They are "racking their brains" for anything that they may be missing.

He was intubated once more (they put his breathing tube back in) because he was going apneic for extended periods of time causing them to have to 'bag him' or give him manual breaths of oxygen through a bag and balloon hooked up to the wall.


It is scary not knowing what is causing this. Without a known cause, they are treating with broad spectrum medicines to mitigate against risk of possible causes...

We don't know what the future holds, as has been the case throughout the entire pregnancy/Daniel's life, but we are confident that all will 'work together for [our] good.'

Lacie is and has been my anchor throughout this journey, as she always is. I am so grateful for her strength, courage, faith and determination. I am grateful for her. She has been at our sides through it all. She is the best I could ever ask for. I look up to her in everything and love her with all my heart.

A Daniel update: Agony

This is agony.

After spending another morning watching my baby repeatedly turn blue and grey from not breathing, I've spent a good part of the afternoon pacing around the outside of the hospital, always planning for the quickest route back to his room and bracing myself for the worst. My fears make everything seem magnified until it's hard to think about it rationally.

Daniel has taken a very sudden turn for the worse. After a few days of wonderful improvement, we are so far living a repeat of two Sundays ago and the nurses are currently drawing blood to check for another infection because Daniel has been doing very poorly very suddenly.

The thought of going through all that again fills my heart with despair. He took so long to recover from that infection, and had so many setbacks and rough days; he's 39 weeks corrected age now - he shouldn't be having these events.
Maybe we'll get some answers this time.


Daniel
Day of life 45
Corrected age: 39 weeks 1 day
Weight: 2010g

(This picture is from yesterday...when he was still doing well.)

Recovery

Daniel
Day of life 43
Corrected age: 38 weeks 6 days
Weight: 1860g (4lb 2oz)



Sunday's blood lab results indicate that Daniel's infection has cleared!
Yesterday he was switched to the 'high flow/high humidity' oxygen support instead of a ventilator. This is a pretty big change and he is handling it well.

During his recovery from the infection, he had a pretty serious case of edema (swelling from water retention), which caused some excessive weight gain. He was given two doses of Lasix to alleviate the swelling and is looking much better now.

He has been recovering pretty slowly - the oxygen settings he is on right now are still significantly higher than the ones he was on before getting sick and too much stimulation will overwhelm him. The doctor says he would have expected a faster recovery.

It's been a very tense waiting game, waiting for Daniel to recover. He still only tolerates one hold per day, usually, but we still try when Davis gets off of work.

Today Daniel seems like he feels a bit better, finally, and has been managing his oral secretions very well, which is something we have been praying for a lot. His nurses are very impressed with how far he's come in the last 2 weeks. It is such a relief to see him acting more like himself; we only pray it can last.

P.S. - to those who have tried to leave comments on blog posts but have had the comments disappear - we've tweaked the settings so that it should work, so please try again and let us know if you still have difficulty! Thank you for your support.

Waiting...

Day of life 39
Corrected age: 38 weeks 1 day
Weight: 1805g (4lb 0oz)

Daniel is still sick. He is better than he was Sunday, but still not back to being himself. He tolerates some holding again, but not usually more than once a day. Yesterday, for example, Lacie got to snuggle with him in the morning, holding him for a few hours, but when Davis came after work and got to hold him, his oxygen levels dropped hard and fast, so he had to go back in bed.

It's really hard to go from holding him almost all day back to only once maybe twice per day.

It's been almost 5 days that he's been on the antibiotics now, so he should be getting better soon. So far he's needing more and more oxygen support - today his settings are pretty high.

Hopefully he can keep this IV in - the poor guy has had 3 or 4 IVs already just this week.
They've had to keep putting in new ones because they have been going bad really fast.

Infection

Day of life 34
Corrected age: 37 weeks 4 days
Weight: 1600g (3lb 8oz)

Despite our best efforts, Daniel has gotten an infection and is very sick.

He is on two antibiotics and we are waiting on blood and urine cultures to identify the bacteria. He's been moved back to an isolette so that he doesn't have to use as much energy to stay warm; he is also on higher respiratory support because he is struggling so much.

I won't detail everything because I don't want to relive it; it's been a very stressful and sad day for all of us. The last few days have also been stressful as Daniel has struggled to keep up his oxygen.

The doctor anticipates him being on the antibiotics and respiratory support for a week. Hopefully this sickness will be over soon.

Daniel is 30 days old

Day of life 30
Weight: 1435g (3 pounds 2 ounces)


It's been pretty stressful in the NICU the last few days. Daniel is still growing super well, but he has had some episodes of not getting enough oxygen, which sets off his alarms and gets him very pale and blue/grey looking. It's horrible to watch but makes it even harder to leave him every evening. He pulls out of it okay, usually with some extra oxygen for a few minutes, and the nurses have been watching him extra close.

Today a nurse sucked some humongous boogers out of his nose, and he's been better with his oxygen levels since then, so maybe that was what was in the way of his breathing and sucking it out will be the magic trick! We'll see how he does the rest of today and the next few days.

On the upside, his afternoon has been great and he seemed to really enjoy his bath today.

Also, today he would be 37 weeks, which is full-term! It doesn't change anything, but it's a bit of an age milestone in the NICU. He is now a 'term baby'.

3 lbs!

Day of life 27
Corrected gestational age: 36.4 weeks
Weight: 1360g

Exciting progress today!

Daniel has graduated to an open crib! This is exciting because it means he can regulate his body temperature and does not need climate controlled personal space in order to stay warm. The crib is also much smaller and low-tech.

Also, he is now up to 3 pounds in weight! He is growing so well!

For a while after he got set up in his new bed, we just sat and admired him. It is so good to see him making progress! Dr. Cheatham (pronounced 'Cheet-um), one of the NICU doctors, reminds us occasionally that while Daniel is still small, he is older than he looks. This Wednesday he will have reached full term corrected age of 37 weeks! So they are treating him more like a term baby, even though he is small; and he is handling it all so well!

He still struggles to manage his oral secretions, but as he grows we are hopeful that this will improve as well.

It's a New Year?!

Happy New Year! 

We are all still doing well and are SO very grateful that the Lord has seen fit to keep all three of us healthy and free from sickness. 

Daniel updates:

Day of life 25

Weight: 1295g

Daniel is still looking and doing great. He is doing better with baths and is starting to increase his hunger cues right before feeding times, which is great developmental progress! We are so happy with his progress and grateful for each day that we get to spend with him. He loves cuddles so Lacie spends most of the day in the NICU and Davis comes by after work to spend time with him. 

It's been an adjustment having Davis go back to work this week, but we are grateful to have a good job and adjusting to new routines.

Also, happy birthday Dad Wilson! ;)