In Memorium

In memory of all those special children who have passed on, some words for those who love them....

When you have someone you love in heaven, you have a little bit of heaven in your home.

 Tears are words the heart can't express.

 

Goodbyes are not forever.

Goodbyes are not the end.

They simply mean I'll miss you

Until we meet again.

We will never be the same as we were before this loss, but are ever so much better for having had something so great to lose.

Do not regret growing older.

It is a privilege denied to many.

Waves

Grieving seems to come in waves. Sometimes we brace our selves and face it head on.

Other times we see it coming and try to run away.

Sometimes it gently laps at our feet letting us know it's still there.

And other times it washes over us completely.

We're learning to take it one wave at a time. 

Sometimes the ocean feels too deep and the waves too overwhelming.

However, it is usually after the biggest waves recede that treasures are revealed.

so we gather them up~

 

and tuck them in our hearts to help strengthen us for the next one. We know that even in those moments when we feel like we drowning, if we remember to look look up, the Savior will buoy us up. He will not leave us comfortless.

He reminds us those waves are filled with love.

The waves don't need to crush us, they can fill our hearts to overflowing-

Because when you love someone deeply you miss them deeply.

And that's not something to be afraid of.

 





Look Upward

 

April's husband gave a beautiful devotional about Caleb's life and death. He shared this quote and other beautiful messages. You can watch it in full here.

"Mothers and fathers who anxiously await the arrival of a precious child sometimes learn that all is not well with this tiny infant. A missing limb, sightless eyes, a damaged brain, or the term “Down’s syndrome” greets the parents, leaving them baffled, filled with sorrow, and reaching out for hope.


"There follows the inevitable blaming of oneself, the condemnation of a careless action, and the perennial questions: “Why such a tragedy in our family?” “Why didn’t I keep her home?” “If only he hadn’t gone to that party.” “How did this happen?” “Where was God?” “Where was a protecting angel?” If, why, where, how—those recurring words—do not bring back the lost son, the perfect body, the plans of parents, or the dreams of youth. Self-pity, personal withdrawal, or deep despair will not bring the peace, the assurance, or help which are needed. Rather, we must go forward, look upward, move onward, and rise heavenward.

"It is imperative that we recognize that whatever has happened to us has happened to others. They have coped and so must we. We are not alone. Heavenly Father’s help is near." ~Thomas S. Monson

The Letters He Would Write

I just had to share this sweet birthday gift to Caleb from his grandmother, Janene Baadsgaard.

Happy Birthday Caleb!
Instead of writing a story for your birthday this year I thought you might want me to help you write a few letters to your mother, father and brothers Joshua, Mathew and Mitchell.
I think if you were able to write a letter to these very special people who love you so much and take such good care of you they might read like this . . .


Dear Mother,

Many years ago you went in for an ultrasound very early in your pregnancy. You found out that I was a boy . . . and you also found out that I was missing my brain. When the medical professionals told you that I had no chance of survival and recommended an abortion - thank you for having the courage to listen to your heart and not your fears. When they told you I would have no quality of life and that I would ruin your family’s quality of life, thank you for choosing to discover what quality of life really means. When they told you I was missing an eye, thank you for choosing to see me as your precious son and not what the doctor called me (not viable - not conpatible with life). When further tests revealed that my entire head had not formed correctly and that my cleft-plate, partially formed nose and multiple missing cranial structures would make eating and breathing in a usual way impossible, thank you for choosing not to despair, but to devote yourself cheerfully and gratefully to my 24-hour care. When the doctors told you to take me home, buy a burial plot and let me die, thank you for choosing to fight for my life and celebrate each day I was in your home.

These past seven years have brought multiple hospitalizations and near death emergencies. We’ve spent a lot of time in hospital, you and me. Thank you for always being there right beside me when each individual breath was painful, labored and exhausting. I’ve heard your every prayer, every heart-felt longing and each exhausted plea to God. And though I’ve never been able to speak a word or raise my arms to embrace you, never doubt how much I love you my precious mother. There is a love deeper than life and broader than time between you and me, an eternal bond that time and circumstance will never break.

I am so grateful that you have chosen to live the past seven years with joy, not sorrow – that my presence was and is enough for you. The world defines us by what we can do. Thank you for choosing to define me by who I am. There will be a day, beyond this life, when I will be able to say all the things I never said, but I have a feeling you already know. When two hearts are knit together, there is often no need for words.

I was born in the winter, a time of waiting before the spring. Always remember that winter’s promise is the hope of spring. There will be a day when the time of waiting is over and all that was lost will be reborn.

I love you mom.

Caleb


Dear Father,

I know you and mom stay up late every night with me so my medication can take effect and also to have some special snuggle time with me. You and Mom usually tuck me into bed around midnight, but it usually isn't long until my alarms start beeping, I need suctioning, a diaper change or more medicine. A few nights a week I have a night nurse who sits with me from 12-6 so you and mom can get some sleep. But on the other nights, it is you and me Dad. You are always there with me when I need you in the night. Those late night hours when it is just you and me mean everything to me. In this life I will never be able play catch, or even speak or hug you. But I know that when fathers love their sons, they love them in the way they need to be loved. With us it is g-tubes, respirators and diapers.

You are always there with me when I need you in the day also. Dad, thank you for going to work every day at BYU so that all of us have everything we need.

Dad, I want you to know about something you may not see. When fathers love their sons like you love me, the powers of heaven open. There are angels around you every night, lifting your arms when you are too tired and keeping you awake when every cell in your body screams for sleep. I am aware of and grateful for every time you turn me, change my diaper, suction me then hug me and kiss me. You never complain, and though I can’t respond when you talk to me, I hear you Dad. I hear every word, spoken or unspoken, every desire, and every prayer to God in my behalf.

I also love the way you tease me like Dad’s do. Like the way you call me One-eye and let me dress up as the one-eyed pirate on Halloween.

I love the way take me everywhere and proudly tell people I am your son. When you come into my room at night I always proudly tell the angels that you are my father.

I love you Dad.

Caleb






Dear Brothers,

Josh, Matty and Mitch - I’m so happy that you are my brothers. You always take time every day to include me and make me an important part of the Moody boy’s story.

I remember when you used to crawl in in crib when I was a baby and sing “I am a child of God” when my heart rate was getting too slow. You always brought me toys and even though I couldn’t play with them the way you do, I imagined myself playing with them and it was still fun.

I love it when you hug and kiss me and tell me about your day. Even though I can’t raise my arms to hug you back, I love the way you lift my arms around your neck and put your cheek next to my lips.

When you talk to me I can’t answer you with my mouth in words, but I hear you listening to me with your heart. When you’re listening that way you can hear me telling you, “I love you Josh.” “I love you Matty.” “I love you Mitchell.” Thank you for helping mom during the day when I need to be turned or suctioned. That is such a nice way to tell me you love me back.

Don’t worry about my eye that is missing. When I was in heaven, I knew the Baadsgaard secret code for telling each other “I love you, you’re wonderful, and you can do it!” It was a wink. I knew that I would never be able to speak to you with words in this life, so I thought of a plan. That is why I chose to come as your brother winking so that you would always know that I love you and believe in you. Thank you for believing in me – believing that I am still your brother inside this body – even though I can’t move, or see or hear or think the way you do. Thank you for believing that even though I’m missing my brain, I’m not missing my heart and soul. Thank you for believing that we will always be one of the Moody boys and we’ll always love each other forever.

I love you Joshua.

I love you Mathew.

I love you Mitchell.

Caleb

Salt Lake City Rain

I wanted to share this song for anyone who has suffered the loss of a child, or faces the reality of terminal illness. This song was written about a special little boy named Gavin. You can find more about his story here.




Song & Lyrics by Ryan Tanner

Love of my heart, why must we part?
I said a prayer on a heavenly start
Give me this day shoulders of strength
To carry the burden of time taken away

I woke last night to a voice in the hall
I heard you calling my name
I rushed to meet you, found nothing at all
All I could hear was the Salt Lake City rain

Love of my heart, where do I start
To patch up the pieces of the old-fashioned heart?
When will it turn, what lessons could we learn?
I'll be counting the days 'til the sun will return

I woke last night to a voice in the hall
Thought I heard you calling my name
I rushed to meet you, found nothing at all
All that I heard was the Salt Lake City rain

Smallest Wingless

This week, I've been overwhelmed with gratitude for my Samantha. I just can't imagine my life without her...with all her imperfections, she is absolutely perfect to me. The struggles and pain that we have experienced (and will continue to experience) is refining my life to help me become who I need to be ~ and her light influences reaches out further than to just me. You know that feeling, like your heart may burst because you love that little child so much? I have felt that often over the past couple weeks.

And then, my thoughts have turned to those who were only touched by a moment of life with their child. I have met many who didn't have the chance to experience very much mortal life with their babies. You may be one of those....or will be. My heart aches for you. As I type, I cry thinking of the sadness you may feel. And my gratitude for each moment I have with Samantha increases. What I have learned from those who have had to face the heartache of losing a child has been a deeper understanding of the reality that every. moment. matters.

Craig Cardiff heard about Now I Lay Me Down to Sleep (follow the link for more information) and was inspired to write this song. Whether you lose a child at birth, a day, month, or years later, I feel like this song rings true to the heart. (Grab a tissue.)



dear one we've been waiting for you.
thrilled, beside ourselves you've arrived.
white coats came in heads held low.
talked for a bit, shuffled outside.

we closed the curtains, held each other and cried.
said hello at the same time we said goodbye.

smallest and wingless
leaving as soon as you arrived.
sadness is just love wasted
with no little heart to place it inside.

we closed the curtains held each other and cried.
said hello at the same time we said goodbye

Welcome to Italy

I'm feeling a bit fragile this week, what with Charlotte's birthday coming up. It's making me act like a jerk. Not wanting to see a friend's new baby because he will be small and cute and soft like Lily was last I saw her. Not checking blogs of close friends from our special needs world because I feel left out or something similar. Feeling resentful that old therapists and nurses and docs from our past don't just call up to say "Hey" and exclaim what incredible kids were Boof and Lily. Like everyone is moving along without us. Ridiculous, I know. Here I suddenly find myself in Glamorous Italy and I'm really missing Holland. Special Needs is a family, and it's a good one. It's close and strong and there to hold one another up. Once you are in, you are never out, even after they come to pick up the oxygen concentrator. My feeling left out is all my doing. Truth is, I just don't like the grieving. The sudden kicked in the gut feeling. The quiet. The look Non-Special Needs Family people get when they find out I've buried half my children. And the fact that I tell my story so matter-of-factly, because it's just my reality. Lot's of people's worst nightmare, my every day.



I miss my snuggly girls. Charlotte was a supreme cuddler. When I woke up terrified in the night thinking I hadn't turned on her oximeter alarm, I could go in and lay with her and hold her little chubby hands and bury my face her in thick coarse hair, smell her sweaty head. Lily slept between us the last few nights of her life, which was difficult with the feeding tube and pump and oxygen, but so worth it. I could lay my hand on chest or squeeze her foot. Hear her breath.



Lately after I finish reading to Ella at night, she immediately announces "I want to sleep in mommy's bed." Zar tends to not come to bed until very, very late, or very early, depending on how you look at it, so I let her. I love having her there, listening to her suck her thumb and sigh, being woken up suddenly by a grubby foot to the nose, but she will not have the snuggles. "NO!" She squawks. "MY PILLOW! NOT YOURS!"



After she falls asleep, sometimes I can lay my finger in her tiny curled hand, fingernails pink and chipped and slightly sticky. Usually she lets it be. Then I sigh and think on the difference between my girls. Two gave their whole selves to me to care and cuddle for, and the two who, already, are running away from me at the park, climbing out of their high chairs and only accepting hugs when they have scraped knees or bonked heads. Or are asleep.

There is a sweetness and sacredness to the absolute dependency I once knew. I miss it.

Charlotte's Poems

Yesterday Ella, age 2, asked me where her sister was. I replied that Ava was upstairs asleep. Ella said "Where my other sister? Where Lily?"
It was the first time Ella has asked about Lily, unprompted.
I went upstairs to gather myself and stopped in front of a framed copy of two poems I wrote for Charlotte, one a few weeks before she passed, and one right after.

Goodnight Boo

In Boo's room all painted in pink
There's a feeding pump with lights that blink and
alarms that ring if the tube has a kink.
And an IV pole, and a feeding bag full
of Pediasure, good for body and soul.
And an air purifier and a humidifier,
and a pulse oximeter with five feet of wire
and a night stand and floor fan
and a red lit probe taped to Boo's foot or hand.
And Breath Rite Strips and Tender Grips
and Albuterol and Tylenol
and a Princess nightlight shining down the hall.
Goodnight Boo.
Goodnight to all your special things too:
Goodnight wire and humidifier
Goodnight fan and IV stand
Goodnight Grips and goodnight strips
Goodnight meds like Prevacid
and Goodnight to pumps that keep you fed
Goodnight to steady vital signs
Goodnight to tube and probe and lines
Goodnight to blinking lights and beeps
Goodnight to Boo, now fast asleep.

And the other:

In Charlotte's new room filled with Glory and Light
A dear little girl rests soundly tonight
and Grandmas and Grandpas have tucked her tight.
A brown dog rests her head at the foot of her bed
near a big stack of storybooks just freshly read.
She listens to lullabies with good little ears
Stretches little strong legs which brought her here
and of needles and haircuts she has no fear.
Her only regret is she knows we are sad.
She looks down and says "Goodnight mom and dad-
I'm safe and I'm happy in this beautiful place
I'm strong and I'm glad there's no tube on my face.
When I first arrived with a dance and a twirl
Jesus held me and said 'Well done little girl-
You did just what I sent you to do--
You brought nothing but joy and perspective too
And all those who met you saw Me in you.'
They gave me a big party with suckers galore
and beads and monkeys, but daddy, there's more!
I can do all the things I could not do before.
I'm glad Ella is with you, you'll be alright
Wouldn't want you to miss getting up in the night
and when missing me is just too much to bear
I'll send a kiss through my sister, you'll know I am there
Goodnight mom and dad, I'll see you so soon
I can't wait to show you my new princess room!
Thank you for taking such good care of me
Now I'll watch over you and my whole family."

Everything is fine. My girls are fine. And I know just where they are.

After the Storm

Guest post by Devon of The Daily Dakin.

On a difficult day, I was reflecting on the lyrics of a song I recently came across (I won't tell you how, because it will forever brand me as a geek) called 'After the Storm'. The artist is Mumford & Sons. Looking at these lyrics, I am at a loss to explain how 4 men could possibly so perfectly describe being the mother to a special needs kiddo. To me, these lyrics follow the emotional roller coaster that this ride truly is--the anger, the loss, the okayness and the not okayness, the determination and restructuring of your entire belief system, the deeply profound lessons and the injustices, the hopelessness and the hopefulness. Check it out.

And after the storm
I run and run as the rains come
And I look up, I look up,
On my knees and out of luck,
I look up.

Night has always pushed up day
You must know life to see decay
But I won't rot, I won't rot
Not this mind and not this heart
I won't rot.

And I took you by the hand,
And we stood tall,
And remembered our own land ,
What we lived for.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears,
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

And now I cling to what I knew,
I saw exactly what was true,
But oh no more,
That's why I hold,
That's why I hold with all I have
That's why I hold.

I will die alone and be left there
Well I guess I'll just go home,
Oh, God knows where.
Because death is just so full and mine so small.
Well I'm scared of what's behind and what's before.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

And there will come a time, you'll see, with no more tears,
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

I love the last two lines. I think as special needs parents it is beyond easy to fall into the role of caregiver/parent and nothing else. I know I have gotten there--I have lost so, so much of myself. I neither regret that nor begrudge Dakin that: it is my distinct privilege to serve him, not just as caregiver but also as mommy. It's a role I wouldn't trade for anything in this world. But I have lost much of me in the roller coaster of emotion. And now it's time to get some of me back. Time to let go of some of that anger and fear and hopelessness. Time to find out what's over that hill, with grace in my heart and flowers in my hair.

Jaxson's Blankies

These blankies are for kids of all ages with life threatening illnesses. No child will be denied a blankie, so don't be afraid to fill out a request. It takes at least two weeks to find material, have it stitched, and then crochet around the edges. It may take longer if we have a lot of blankies to do.

Request a blankie here.

Donate here.

Dare: -verb

by Behka of Jonah Dare

Dare: –verb
1. to have the necessary courage or boldness for something; be bold enough: You wouldn't dare!
2. to have the boldness to try; venture; hazard.
3. to meet defiantly; face courageously.
4. to challenge or provoke (a person) into a demonstration of courage; defy: to dare a man to fight.
5. to have the necessary courage or boldness.







Jonah's middle name comes from Robert Dare Wilson, my grandfather. It is a family name and arguably the coolest name ever.



My grampa was a great man. He came from humble circumstances. He rose above his situation and promised himself he would change patterns of behavior he had seen in his childhood. His intentional choices changed the destiny of his numerous posterity. He lived a courageous life and overcame many hardships, and some he had to endure until the end of his life. I owe a great deal to this man. We thought it appropriate to name Jonah after him.



Jonah faced many hardships and challenges, and I believe he did it with courage and boldness. He wasn't a complainer; in spite of his limitations he did more than we thought possible, more than we hoped. He had the boldness to try; venture; hazard. HE DARED.



The next time you are faced with a challenge, DARE. The next time God blesses you with an opportunity, DARE. The next time the odds are stacked against you, DARE. The next time you are called upon to stand for right, DARE.



I love the Primary song, 'Dare to do Right'.

Dare to do right! Dare to be true!
You have a work that no other can do
Do it so bravely, so kindly, so well,
Angels will hasten the story to tell.


Dare to do right, Dare to be true,
Other men's failures will never save you
Stand by your conscience, your honor, your faith;
Stand like a hero and battle till death.

Dare, dare, dare to do right;
Dare, dare, dare to be true,
Dare to be true, Dare to be true.



Jonah Dared. Do you?

Gift of Time

A Gift of Time

Continuing Your Pregnancy

When Your Baby's Life is Expected to Be Brief
By Amy Kuebelbeck and Deborah L David PH.D

While I was pregnant with Charlotte I was on the lookout for any books or resources to help me though carrying to term while knowing my baby would not be long for this world. The best resources I found were www.benotafraid.net and the book "Waiting with Gabriel", about a baby with only half a heart and his mother choosing to carry to term.

This book, A Gift of Time, came out a few weeks ago. I immediately bought it on my kindle, because I had been receiving email updates on its publishing for years. I had sent in an email when Charlotte was a baby about my experience carrying to term. This book is wonderful. It is informative, it is real, it is comforting, it is practical, and it is very sad. I wish I would have had this book while I was pregnant with Charlotte, and with Lily. Over 100 parents are interviewed and quoted throughout, and I am one of them. It makes me happy to see Charlotte's name there in print (even in e-ink) and hope her story will help moms and dads going through this.

Out of my entire experience with Charlotte and Lily, I can honestly say the hardest time was while I was pregnant with Charlotte. The terrible unknown, feeling so alone, afraid of the birth, afraid of what she would look like, if I would even love her, etc. This book addresses all of that, and what comes after. In fact I read the last few chapters the night before Lily passed away. Even though I'm a nurse and I had been through this before, it was still helpful to read about the dying process, about the decisions that need to be made after death, about relinquishing Lily's body, which is another very difficult moment. Luckily that moment was made much easier by a very caring and respectful mortuary worker. Not everyone has that experience.

This book certainly isn't book club fare or casual reading, but if you happen to hear of a mother who has chosen to carry to term despite a bad prenatal diagnosis, I hope you will direct them to this book or buy them a copy. It covers EVERYTHING you go through. It also covers the first big decision, which is whether to carry to term or terminate the pregnancy, and obviously it is geared towards parents who choose to carry to term. This may not be the right choice for every family, but it was the right choice for us, (both times) and this book would have been so helpful to have. I'm so glad it's available and that I was a part of it!

Fragile Life

"Would you like a boy or girl?" and I reply

all blushing, body blooming like a rose
"It doesn't matter much to me; all I
want is ten fingers and ten fine strong toes-
A healthy baby with a lusty cry."

Such strange conditions, idly placed upon
our love of children born beneath our hearts.
As if we would not love a little one
that's formed awry, confusion in it's parts-
or treasure legs we know will never run.


Can you not stay, my baby? We'll repair
your damaged body, if you'll but live.
I fold myself in faith, hide from despair
Remain awhile--we have so much to give
each other--so much joy to share.

I mourn each problem but do not forget
The spirit held here by your mortal clay
I know that all will be restored--and yet
beg for this sooner-can't it be today?-
and weep for hopes all shattered, dreams unmet.


You're such a welcome burden, so I cry
to our shared Father, He who understands
and cares for me and loves you more than I
know how. Your fragile life rests in His hands.
And I? I'll raise you now...or by and by.

--Louise Helps

Charlotte's Story

Charlotte was born on June 30, 2005 after a physically easy but emotionally difficult pregnancy. She was our first child and had been diagnosed at about 22 weeks gestation with partial trisomy 16 and partial monosomy 9 after a few few "funny" findings on ultrasound and finally an amniocentesis. This meant she had an extra piece of chromosome 16 and was missing a part of her 9th chromosome. This was a very rare finding--there can be any number of unique chromosome arrangements and the doctors were unable to find any other cases like hers in the literature. We were told I would most likely miscarry before birth, or that our baby girl may survive a few moments. We were also told that this was the best case scenario, because otherwise she would "stare at the ceiling until she died" and never recognize us or have any quality of life. We also found out my husband is a balanced carrier for this translocation.

Despite this very grim prognosis and the many opinions we received that termination would be best for all involved, we chose to carry to term with the hope we would get a few moments with our first child. During the weeks that followed we constantly reminded one another that we had chosen to place our baby and ourselves in God's hands.

When she was born--much larger than expected at 6 lbs 5 oz and beautiful beyond description--we were thrilled when she cried and breathed with very minimal intervention. She stayed in the room with us after her birth and was passed from family member to family member for hours. When it became clear she wasn't going anywhere, the nurses came in and we gave her a bath right in the room.

Three days later we brought her home with the warning she would likely be with us only days.

Charlotte was a sleepy baby and had to be woken up in the night to eat. She ate well from a bottle but unfortunately did best on Nutrimagen, an expensive and smelly formula. We were thrilled when we were able to switch her to soy. She was very prone to terrible diaper rash and grew slowly, but we were happy for each day we had with her.

As the days turned into weeks, we started with the specialists. She began seeing Early Intervention at 3 months for physical therapy and also saw Cardiology, Orthopedics and Genetics in addition to frequent trips to her Pediatrician. After spiking a very high fever and being admitted to Primary Children's Medical Center for the first time in October 2005 we found out she had kidney reflux and was on antibiotics her entire life to prevent infection. Soon after she had an incident of respiratory arrest while at Grandma's and after being worked up for days in the hospital, she came home on 24 hour oxygen for apnea and pulmonary hypertension.

Charlotte was growing. She smiled and giggled but didn't make eye contact or reach for toys. She had been born with trigoncephaly, which meant her forehead had fused into a point. We had been told by the Neonatologist that this was because she had no frontal lobe to make her skull form correctly, which, he pointed out, was the center of personality. Charlotte's Orthopedist who casted her crooked foot asked us what we were doing about her head, which we said wethought was just a cosmetic issue. He sent us right across the hall to a surgeon who suggested an intense 8 hour surgery. He explained that her brain (which we thought was nearly non-existent) was unable to grow with her skull sutures fused and it would be in her best interest to have the sutures opened to allow for optimal growth and to reduce the risk of seizures and other problems. I was so happy to have a doctor looking out for Charlotte and her future, and we decided to go ahead with the surgery.

When Charlotte was 8 months old we shaved off her beautiful dark hair and she underwent a bilateral orbital advancement. It was a long surgery and was scary, but she did well and went home a few days later. A week after returning home from the hospital, on a Sunday morning, Charlotte reached for a toy for the first time, and days later lifted a baby cookie to her mouth and sucked on it. It was incredible to see her progress after the surgery. She immediately began making eye contact and smiled much more often. She was a different baby girl.

Charlotte did well for the next year, but her growth dropped off quite a bit. Doctors started suggesting a feeding tube which we fought. We were afraid she would lose her ability to eat and she loved to eat. Finally after an episode of reflux and pneumonia we decided to go for the g-tube and Nissen procedure. It took months for her to be healthy enough to place it. We will always wish we had done it earlier. After a difficult surgery and hospital stay we began using her g-tube to feed continuously at night. She continued to get her favorite foods during the day as well. Charlotte again grew by leaps and bounds. Her hair grew like crazy and she had energy to roll and play and laugh. Looking back on pictures of her before we placed the g-tube we are broken hearted. She looks so thin and sick! She was just not able to eat enough to meet her needs. We were also much more likely to get her full medication doses through her g-tube and were able to keep her hydrated when she got sick and refused to eat. There are times I still wish all kids had g-tubes.


Life with Charlotte fell into a predictable pattern over the next months. There were fevers and middle of the night rushes to the Emergency Room. There were many therapy appointments, minor surgeries, the occasional respiratory emergency and big scare, and so many triumphs. Charlotte was happy. She had a great sense of humor and a strong personality. She loved spending time with her family and big dogs. She had her favorite toys and her definite dislikes. However her health was always fragile. I hated going to cardiology appointments as I knew her pulmonary hypertension was slowly worsening and there wasn't much anyone could do about it. I hated having to turn up her oxygen during colds and seeing her struggle. I hated taking her for haircuts, because for some reason despite all the other awful things she had to endure, she really could not stand having her hair cut.

Charlotte got a little red wheelchair for her 3rd birthday and started preschool later that year in 2008. She had learned to sit up on her own and was clearly quite proud of herself. She was learning to wear her hearing aides and seemed to be understanding a few signs. She was affectionate and happy. She also had a new baby sister Ella, who was born healthy in October 2008. It was frustrating but kind of fun to watch Charlotte go through the usual jealousy that comes with a new baby. She would glare and refuse to look at Ella, throw fits when I fed her and try to bite Ella if she was able to get close enough. Within a couple of weeks she got used to having her around, but we still had to watch out for the biting.

That winter we found out Charlotte had aged out of the recommended period for Synagis, a monthly shot that helps prevent RSV. She had a hard winter, and was often sick and missed a lot of school. It was heartbreaking to see her losing some of her skills she had picked up over the last few healthy months but we held on to the hope that spring would come early.

In February 2009 Charlotte spiked another fever and her oxygen need went up. We went to the ER after much prayer and she was diagnosed that night with RSV. I was actually relieved that it wasn't heart failure. Over the next few days Charlotte did not improve and soon had pneumonia as well and was in the ICU. On Saturday February 21 we called our families together and everyone came to say goodbye to Charlotte. It was like an echo of her birth day--the family all together in a hospital room passing around a now-much-bigger baby and giving her kisses and crying over her. She passed away very peacefully surrounded by those she loved and who loved her.

Over the next few weeks I felt Charlotte so close and I was surprised at how full of light I felt. It was a special time. However after awhile the grief set in and we worked through it as a family and on our own. How grateful we were to have our little Ella with us and the support and love of our families. Grieving is a long and possibly endless process but knowing Charlotte will always be a part of our family helps us cope with the loss of our darling girl. We miss her terribly but talk about her often and her little sister recognizes pictures of her, even though she was only four months old when Charlotte passed away.

We also began to consider how and if we could continue to grow our family. Ella had been a happy surprise but doctors estimated our risk for having another child with an unbalanced translocation between 12 and 25%.

We began exploring our options, and decided to make a decision in February 2010. In late January I was asked by a woman at work if we were interested in adoption. I said yes and within weeks we had met an amazing young woman who was expecting a baby girl in May. The weeks flew by and Ava joined us on May 5 2010. Two month earlier on March 5th, I had discovered I was also expecting again, despite the fact we had taken precautions. I also felt fairly strongly that this baby was not healthy.

Our fears were confirmed and I am expecting our 4th daughter on October 20 2010. She has the same chromosomal abnormality as Charlotte. She also appears much healthier than Charlotte did on ultrasound, does not have trigoncephaly or any heart issues at this point, and her name is Lily. Although we know anything could happen, we know there is a good chance Lily will be with us for more than a few days.

We have many fears. We always wondered how we would ever handle Charlotte's appointments and hospital stays if we had other children, and now we have two other very young girls. We are not looking forward to watching another child suffer through medical procedures and are praying hard that Lily will not suffer from pulmonary hypertension and not need 24 hour a day oxygen. We also look forward to using all that we learned while Charlotte was with us to help Lily reach her fullest potential. We are excited to have another very special spirit in our home, and have to believe that this is God's plan for our family, and an extension of that commitment we made years ago to place our baby and our lives in God's hands. In the end if we have faith this experience will be for the betterment of all of us. Charlotte gave us so many gifts. We go in this time with much less sadness, much more hope, and the wisdom, experience and joy that Charlotte gave us.

Hope Bed

Up until now, Caleb has been in a crib. A crib has been the best place to keep him safe, and we've done our best to keep him cozy and comfortable. This past year it was quickly becoming evident that Caleb had no more room in his little bed. We knew it was time to think about getting something else. We were hoping to get a sleep safe bed. Our doctors wrote letters of medical necessity to our insurance company, and we were promptly...denied. However, our secondary insurance really made a case for it, and the day after Caleb's birthday we found out it had been approved! Getting medical equipment for Caleb has been a challenge at times. When his bed arrived, I was overcome.

It is a bed that will last for years and years.
For me, it has H.O.P.E. written all over it.