Everly's Angels Foundation, Inc. Part 2

Part 2

Taking cues from our life with Sweet Pea, our heart for Everly’s Angels’ purpose is to use our family’s experience, our life together to ease the challenges of others who have a similar path to follow:  as a special needs family and, more specifically, those parents who receive a diagnosis their baby has a life-limiting condition.   

We have been raising two typically developing boys, one 8 and one 16, so the idea of “special needs” really didn’t impact us any.  We were on the outside. 

Until February 20, 2014.  Then we get a true insider’s view.

 

What a sweet and sour journey that was and, of course, one we wish we were still on today.  But God has other plans for our family.

I don’t think it is sufficiently possible for us with typical children to fully appreciate the challenges that those families go through.

Really there isn’t.  But to give some perspective, consider the following:

o  There are numerous and an overabundance of doctor’s appointments, waiting in a germy waiting room for an over-booked doctor. 

o  A house full of medical equipment that we neither want as home décor but at the same time value as it saves our children’s lives.
 

o  The difficulty in going anywhere with all your “stuff.”

 

o  The constant worry that this next bug or illness will land your child in the hospital. 

Our PICU

 

 

 

o  Parents who earn honorary medical degrees in record time.

o  Adding the constant use of acronyms (NG, G-tube, PICC to your daily speech so much so that it seems to lay people (aka non-special needs parents) that you are talking in code.

o  Many, many, many FUN conversations and phone calls with and to insurance and DME companies.  {insert sarcasm here}

o  “Loss” of parent in a sense for the siblings in the family.

o  The pain of watching your child have procedure after procedure.

o  Not being able to have any “down” time because without a clone of yourself, the complexities of your child are so much so that you aren’t able to leave him/her with just anyone.

 

You get the picture, I’m sure.  There are SO many more ways I know  I honestly had no idea until I lived it myself.  But these families need our support, our encouragement and through Everly’s Angels, we purpose to do that, even if it’s a small way.

The other side for us, aside from the special needs aspect, was knowing our daughter’s genetic condition was life-limiting.  That is a mighty emotional road.  I mean really…to know your newborn baby statistically would not live to see her first birthday?  And in some cases of babies who are diagnosed, not only with Trisomy 18, but with a variety of other medical complexities making sustaining life all but impossible through the end of the pregnancy or very shortly after birth. 

What then? 

Honestly, I think society has it ALL wrong.  Superheroes aren’t costumed and have superpowers.  Superheroes are parents choose to give all of themselves knowing what is to come, knowing the pain that will ensue and doing it anyway.  Those are true superheroes.

Here’s a glimpse into that world:

o  Parents learn more about the medical world than one would want outside of being a medical professional.

o  The anxiety that is always present worrying about germs and life-threatening illnesses.

 

o  The constant fear that the doctors weren’t telling you the “whole” story or weren’t in your child’s corner when being advised.

o  Most are on hospice or a palliative care of some sort and ALL that comes with that very difficult and emotional idea.

o  The complex stress and prolonged grief of not knowing when your child’s last breath will be.



Too much CO2 in her body.  Can't get rid of it, even with BiPap.  Told it might be the end (this was our 5th time hearing this in her life up to this point and that creates it's own kind of living hell.)
 

o  Trying to parent a whole lifetime for this child, soaking in every

         moment for fear of the time when there will be no more.

o  Feeling torn constantly between the time you need to give the siblings and the abundance of time you want and need to give this special baby.

o  Watching your child grapple through their varying medical complexities, not knowing the right path or answer to issues.

 

o  Watching your child day in and day knowing that one day in the not so distant future, you will have to say goodbye.

 

o  Ultimately having to experience child loss, the greatest of all losses that exists. 

 

               There are no words really to describe this part of the journey.

************************************************************

 

The list goes on but it’s enough to know that these superhero parents deserve and need our support.  So, through the work of Everly’s Angels, we hope to be a beacon of light for these families who endure so much.

We also hope that in both cases the foundation can uplift and encourage not only the parents, but also any siblings in the family.  It’s a tough job for any adult but for a child, it’s even harder.  We pray that we can provide a bit of cheer and happiness to their life as well. 

 

 We chose to live very purposefully with Everly when we received her diagnosis, taking full advantage of every second of our 340 days together.  I guess you could say we had the “luxury” of knowing ahead of time. 

We created a bucket list for Everly and for our family, making memories and living life together.  Ever focused on the present, we were intent about our time together every single day.  No moment was wasted, no time slipped by unused. 

With Everly’s Angels Foundation, we desire to encourage all people to be purposeful with their time, living live with intention and making the most of every day, just as we did with our precious baby girl. 

Because of Everly, our eyes and our hearts have been opened to a new world…

challenges and needs of special needs families

the hearts of families who will lose a child

siblings of families in difficult, life-altering situations

 a sincere appreciation for the simple moments each day

the value of living life to its fullest and with intention

 

 

...and to educate and promote awareness for Trisomy 18, the

condition that changed all of lives forever.

 

                          Foundation Purpose

Everly’s Angels

The specific purpose for which the corporation is formed is to promote education, provide assistance and advance public awareness about Trisomy 18, a rare and life-limiting genetic condition.

Mission Statement

Everly’s Angels Foundation is a 501 (c) (3) non-profit charity striving to provide encouragement and support to special needs families, parents who receive a devastating prenatal diagnosis and families who have experienced the tragedy that is child loss. It is the foundations desire to encourage others to live with intention and purpose, despite a diagnosis, ailment or circumstance, and to make the most of every day.

It is my personal hope, desire and mission that

Everly’s Angels Foundation seeks to carry on the

 legacy left by my daughter.

 Everly Marie Hopkins (2.20.14 – 1.26.15)

 

  

 

Today Is the Day

There are certain days in your life that can't be forgotten.

This is one.

This photo captured the day we told the boys their sister had a life-limiting genetic condition called Trisomy 18.  This photo was taken just moments before our lives as we knew it would be no more.

Everly was born in February 20, 2014.  Unlike most, we did not have a confirmed prenatal diagnosis of Trisomy 18.  At our 20 week check up, there was a concern and then at 23 weeks, there was a suspicion of T18.  However, in the subsequent weeks, that concern went by the wayside and it was thought to be a congenital heart defect alone. 

Nothing more.

On Everly's 5th day of life, our doctor sat us down and gave us news that would forever change our lives.  Our perfect little girl had a chromosomal defect that the medical community considers fatal.  That day we began to grieve the loss of the life we thought we would share with her. 

The news shattered us.  Devastated our family.  Brought to light fears we never even knew existed.

We spent one full day letting the news soak in before we had the boys come to the hospital to share with them as well.  How do you prepare to tell your children something so awful?  Garren, at age 15, knew as soon as we started to speak what we were going to say.  He remembered the 3 week period early on in my pregnancy the doctor suspected Trisomy 18.  It was such a difficult day to watch the agony, the questioning, the confusion and to know not only could you NOT do anything about it but you felt the exact same way as their parent. 

I look back and remember the anxiety we had as adults thinking about telling the boys their sister may not make it home.  To us, we only knew what we were told...most babies don't make it but a very brief time after birth. 

So, we had no expectation she would then spend 11 glorious months with us...experiencing the BEST life!  No, on this day, we thought we should begin preparing for the end.  We didn't reach our point of hope until we began to listen to HER and let HER lead us!  It was then that we began to look toward our newly created BUCKET LIST for her with excitement, hope and joy!  Our list started with just riding in the van, feeling the sun on her face, sleeping in her house.  Who would EVER guess this special BABY BUCKET LIST would include riding in a BOAT, visiting the MOUNTAINS, and meeting SANTA CLAUS??  Not only did we get to do her first little list of three things but her list grew to eventually top 100 AMAZING experiences we shared as a family!

 
What is a challenge for us is why other families do not get this chance?  Why even our family didn't get to see one year?  Five years?  Or her lifetime?  It's impossible to not ask this difficult questions.  I can only answer that it is not us in charge and our God does turn ALL things for good.  Why do we need to experience what seems like the depths of HELL to get to the GOOD?  We will not fully understand in this lifetime.  That I know.  Common platitudes given in times of crises fall on deaf ears when you've lost a child.  Ask who has experienced it.  However, I can tell you that the peace we feel comes from knowing that He is in control and that He walks beside us, carrying us as necessary.  It is not true that God will not give us more than we can handle.  I can tell you firsthand that losing my Everly was 100% no doubt, absolutely more than I could handle alone.  Without Him, I would not be able to get out of bed, function for my two boys, move forward.  No, it IS because of HIM that I CAN choose JOY each and every day. 

So, I look at this picture taken when Everly was 6 days old, 1 day before my 41st birthday, and I am so grateful that our family CHOSE life for Everly. 

We chose to spend each and every day living in the moment, being intentional in our time.  We made this choice on good days and on bad days.  Our Sweet Pea's diagnosis would not stop us from LIVING, from experiencing.  Yes, it was hard and yes, there were challenges.  But our desire to be purposeful with our hours, days, weeks was a conscious decision. 

One that we remain so grateful for...each and every day. 
 
You might not be in the same situation we were in, you might not have a medical diagnosis.  But if you are not living your life to the fullest, today is the day you can make a change.  Small steps. 

Enjoy this moment.  Do something you love.  Live with purpose. Strive to make a difference.  Have no regrets.

Be intentional in your interactions, plans, life, relationships. 
 
Today is the day.  Do it for Everly.  Do it for yourself. 

 

I'd really love to hear from you so feel free to leave a comment.

With love,
Crystal

Don't Be Afraid...Promise!

"What brought you here today for the pet therapy handler training?" the instructor queried. 

As that questioned was answered by student after student, I contemplated my own response:  tell the truth or tell the answer that would be easiest for the class to hear.  I opted for a combination of both.  I shared that my daughter was the inspiration behind wanting to visit the pediatric ICU and how, though short, her life brought much meaning and motivation for many.  I kept it short, sweet and upbeat. 

However, as our class took a couple periodic breaks and then we headed to lunch, I noticed that people avoided making eye contact with me.  It was quite the mixed group of students but I kind of knew right away why they weren't looking at me. 


Her death.

You see, I get it.  It makes people uncomfortable.  It isn't the way the world works, a child's death, and it just plain and simple makes us uncomfortable. 

Except when the death happens to your child.

For us, we must speak about our child, my Everly, just like I must have air to breathe or food to eat.  Whether it's just the mere mention of her in my count of "how may children do you have" (which I was asked for the first time this weekend) or I expound on her life and Trisomy 18 diagnosis because someone is truly interested and this is new for them. 

I survey the lay of the land, the situation, the person or persons I am addressing before I speak.  I try to temper my statements based on all of these pieces of information.  When asked at my training class, I wanted to answer the question as to why I attended the class honestly but keep it upbeat and moving. 

But even though I did that, I still was received politely but almost with a bit of avoidance. 

It just boils down to the fact that we, as a society, have a hard time reconciling an event that seems almost is out of balance with nature.  Children don't die.  They just don't. 


But, alas, my friends, they do.  And we have to help make those people in this awful, lonely, isolating club feel okay and loved.

But we have to take it one step further.  Please.  We must help our children, too.

I know what you're thinking because I did, too, at one time.  I can't tell my child about xyz event (death, divorce for example) because it will shatter them, scare them, on and on.  I know the drill.  I did it, too.  I wanted my boys to think nothing bad would ever happen.  That there was nothing scary out there. 

The only thing is that it's not real life.  Bad things will happen.  While I don't think that making all the details known or giving out a scary impression is the right way to go, I do promote that sharing certain events with your children is not only appropriate but healthy.  Obviously, each child is different so maybe this isn't feasible for all.  But you know what I mean, I hope.

Why?

Because my 8 year old son needs kids his own age.  He's told us that he doesn't want to go to the park because there's no one ever there that he can talk to.  I asked why and he said because when he tells them that his sister passed away, they either run away or ignore what he says.     

Now keep in mind, this is a MATURE 8 year old who attends youth grief counseling bimonthly, lives in a house where Everly is openly and frequently spoken about and understands how others may not grasp the gravity of his situation.  If you know my son, you know he's open and honest.  He's also  super proud of being Everly's brother.  However, he must want to share with these particular children but, unfortunately, these children weren't prepared to respond. 

Understandably so. 

It's not in our parenting manual for "how to teach your child what to say when his/her friend's sister passes away."  But it doesn't mean we couldn't equip our child with a sentence or two for tough, general situations.  And even more important, how to be empathetic and show compassion.  That running away or ignoring his statement is very hurtful and saying almost anything (I'm sorry is an easy response) is better than nothing.

That brings me back to my training class.

At the end of class, one brave lady approached me and engaged me in conversation about what I had shared and our dogs.  I'm so thankful she did! 

As we've counseled Kendan on these experiences, which I might add have caused him to avoid one park in particular because it's happened more than once, we've shared with him that so many people, including adults, just do not know how to handle this type of news.  That most parents haven't taught their children how to respond and handle difficult situations when confronted.  Ourselves included.

Until now.

It's happened to me a number of times now since Everly's passing; it also happened to my mom, Jimmy, Garren and my dad.  We've all had similar scenarios to Kendan's. 

Folks might see us out but are fearful of approaching, engaging or just mentioning Everly or anything regarding our grief in general.  

Don't worry.  We understand.  We get it.  I know this awkwardness exists. 

But it doesn't have to and we want to help. 

I've had three braves souls tell me personally that they haven't reached out to me sooner because they didn't know what to say.  How I appreciate the honesty! 

So, here we go.  Below are 5 statements that might help:

1.  I'm sorry.  Short, simple and truthful.  Just knowing you acknowledge and that you care goes, oh, so far!

2.  How is your day today?  Each day for us is different so this question allows us to answer better than just how are you...but, honestly, that question is okay, too. 

3.  My favorite picture of Everly is _______.  Something that never gets old for us. 

4.  What are your plans to continue to keep Everly's memory alive?  This gives us a chance to share something positive and something that gives us joy.

5.  What do you think Everly is doing right now?   This type of statement does make us smile.  We love to think about her being tube-free, happy and not confined by earthly constraints.

Please know that the only question that hurts is the one that is never asked. 

I have an article here that we think is well-written and offers helpful advice.  If you aren't sure how to approach a situation like ours, how to help, what to say...this is a great resource. 

My prayer is that this post will help.  Please know that we try to meet you with a smile and are ready to connect and visit.  Don't worry about making us sad, or that we will cry the minute you mention her name. 

We may cry if you don't.

March is Trisomy Awareness Month

Today kicks off a month of Trisomy Awareness. 

Elizabeth Joy & Everly Marie

Our family will be spending the day with two special Trisomy 18 families.  The Adams and Marquart families both lost their blessings this past year in May and July respectively.  Though our losses bring us together, our memories and shared love for our girls bonds us.  I know we all, including spouses and children, look forward to this opportunity to reflect on a journey that only few have experienced. 



Melanie Rachel

Everly, along with Elizabeth Joy and Melanie Rachel, were born with a rare and life-limiting genetic condition called Trisomy 18.  This condition occurs when there is an extra 18th chromosome present.  At this time, doctors are unsure as to what causes this type of abnormality to occur. 

Though we are not great fans of statistics, they give some general idea of the outcomes for these babies.  More than 50% of babies carried to term will be stillborn.  Less than 10% of babies who do survive will live to their first birthday. 

Everly made it 11 months and 6 days. 

Trisomy 18 can affect just about every part of a baby's body.  Most (90%) have heart defects of some kind.  Physical and mental challenges are characteristic for our sweet children.  It is not uncommon for them to have:  difficulty with oral feeding, kidney problems, physical malformations, spine issues, digestive concerns and many more issues as well. 

However, babies and children with Trisomy conditions are loving, entertaining, communicative and bring so much joy to their families!  They offer SO much to all who know and love them!

So many in the medical establishment leave no hope for our babies.  When we received the Trisomy 18 diagnosis for Everly when she was 5 days old, we were told to just take her home and love on her.  Yes, we did, but we should have been given the other side that it is possible to seek treatments and help, too.  I'm glad we didn't just listen to them but listened to Everly and followed her lead. 

Everly was a light for all of us in our family and to so many who friends and family and even people who didn't know her!  She was amazing and brought so much awareness to Trisomy 18.  She defied so many odds and so many statistics!  She continues to be that light as we think back to all that she did and continues to do even in spirit. 

Here are a few other awesome Trisomy 18 kiddos that I followed along my own journey and are also now chasing butterflies and rainbows with Everly:

Nora Rose

Chase

Araya

Unfortunately there is very little research and funding to help learn more about Trisomy conditions.  

There is no cure for any of the various Trisomy conditions this time.

Please help us this month raise Trisomy Awareness!  Feel free to click here to download a graphic to use for the month!  

Just Read Please

My specially ordered shirt to wear to our first Pediatric Cardiologist visit in November. I was speaking His word over our appointment.

First, let me start by saying how much each of mean to me. Your continued support has, at this point, lasted a bit over a year. Some of you are family. Some of you are personal friends who I’ve known for years. Some of you are “virtual” friends. Some of you are followers who love Everly.

Second, let me also tell you that, though I did not think things could get any harder, they did.

Third, I've thought long and hard about this message I'm sending you and have had it in the queue awaiting publishing since the weekend. I've also spoken with my husband, he has read this and he is fine with this going out.

I have shared all parts of this journey with you and this is an important part. A big part.

I need to make a quick timeline to help refresh your memory of this last year to better understand the latest news.

August 2013. Had Maternity 21 screening which looks for Trisomy 13, 18, and 21. Less than 1 percent risk out of 10,000. No concerns.

October 2013. Atour 20 week ultrasound, choroid plexus cysts were found on her brain. Referred to high risk clinic.

October 2013. High risk OB sees hole in her heart and tells us that she suspects something called Trisomy 18 which we had never heard of before. She tells us that it is a fatal genetic condition. I refuse an amino to confirm the suspicion. They refer us to a fetal cardiologist.

November 2013. At fetal cardiologist's office, he isunable to see any problems or concerns with Everly’s heart or development. He gives the all clear but asks us to come back in a month. We rejoice and celebrate this incredible miracle! Dismisses the suspicion of Trisomy 18.

December 2013 Return visit to fetal cardio’s office and this time he finds a large hole in her heart (VSD). Suspects Double Outlet Right Ventricle. We are shocked but thankful this is repairable and not fatal. Still no additional concern of any genetic anomalies.

January 2014 Return visit to fetal cardio’s office and this time he tells us that he also suspects coarctation of the aorta in addition to the other congenital heart defects. Weare crushed but still again feeling glad that it is repairable and not fatal. Still no concern of any genetic anomalies.

October 2013 – February 2014 Continue to also be seen by OB doctors twice weekly, one visit for biophysical (ultrasound) and one for non-stress test. No mention or concern still at this point of genetic anomalies, even though my mom and I had done research and knew to ask about clenched hands as markers.

At birth, there was suspicion of some chromosomal abnormality and a FISH test was ordered. Results came back on 2/25 that she was Full Trisomy 18.

Fast forward to October 6, 2014. We went in to the geneticist for the first time since birth so we could help them to see the “other” side of Trisomy18. While there, we found out that her original test at birth stated that she was borderline Full Trisomy. Basically what that means is that she was close to being considered Mosaic Trisomy 18, which has a much longer and better-fairing prognosis. Mosaicism occurs when the extra 18th chromosome is only found on some cells inthe body, not in all like in Full Trisomy. Many children with Mosaicism can walk, sit up, feed themselves, eat bymouth and SO much more. But the biggest thing is their life expectancy is much, much longer and can be into the 30’sand 40’s. In addition, the medical community typically offers those children surgical interventions like heart repairs which drastically improves their quality of life as well as their lifespan.

Jimmy and I at the baby event days after her "clear heart" report in early November.

In hearing her borderline status, which was news to us, we requested her to be retested and so she was. I didn’t think too much about it honestly because at birth they said it was close enough to be considered full (though they hadn’t told us this information). About two weeks later, I received a phone call from the counselor that stated Everly’s test came back that she was indeed MOSAIC Trisomy 18!!!! I was in shock and utterly speechless. We decided to schedule an appointment with the geneticist to get more details and more about what this diagnosis this means from a genetics standpoint before sharing with everyone. In the meantime, I was on cloud nine knowing how this would change her life and ours drastically! I would not lose my daughter so soon, she could live life with us. I felt the blessing of God and that He had answered our prayers from so long ago. Though she wouldn’t be whole, she would be here for a much longer time! What a cause to celebrate!

In the meantime, we decided right away that we needed to get her G tube surgery with this new info. So we met with GI who then ordered the Upper GI which found her malrotation of the stomach. We also told our cardio at our appointment last Monday (November 3) and she was completely caught off guard by the new diagnosis. She then said she would need to think about it but given the new prognosis, heart repair or banding could possibly be a consideration!!! I was jubilant!

Her first smile at about 33 weeks.

That follow up appointment with the geneticist was also last Monday (November3) in the afternoon. My intent for going was to try to get some information about Mosaicism. However, my husband had a doubt about the validity of this new test because Everly had mouthcare (breastmilk) about two hours before. The test was a cheek swab. He was concerned the test picked up some of my DNA instead tainting the test. So, he requested that this test be redone. They redid the test then—she had mouthcare again with breastmilk about 5 hours prior this time as I was not anticipating having her retested. Results were due in on Friday, November 7.

As you can surmise, I was devasted, distraught being a better word, at the thought of retesting. However, I had faith that God would show up in this new test as well. I knew my husband, coming from an atheist viewpoint, could not just believe that the result was what God had wanted. He needed to question it. I also knew that that I was to honor my husband and this included going through with the retesting.

Baby Everly at 20 weeks. Love this one.

Last week was almost unbearable. I finally had a breakdown last Tuesday. It all came crashing down at once and it was just too much. The days couldn’t pass quick enough. My heart was racing, my prayers more determined. On top of the waiting, his sister and his brother-in-law came into town on Thursday so I needed to put on a happy face. Though I was looking forward to their visit, I just was having a hard time coping with it all. The year seemed to come to ahead this exact week.

Then Friday morning came.

I knew when the caller-ID said “Caller Blocked” who itwas. I also knew the minute she spokethe first word what the news would be. I can’t quite remember what she said but I do recall hearing “this rollercoaster” and “Full Trisomy” somewhere in the call. It was like February 25 all over again. The same darkness reappeared. The same abyss. I couldn’t speak. And I couldn’t understand it in my human, earthly existence. Why, God? It didn’t make any sense to me at all. Jimmy was beside me and I had the phone on speaker and I just handed him the receiver and walked away. My baby, who just got a second lease on life, would not be with me like promised just four short weeks ago.

I just did not understand.

This “roller coaster” the counselor spoke of was a ride that I didn’t seem to be able to stop, let alone get off of at all. It’s like the cruelest of jokes. From way back last year with our first Maternity 21 test all the way to that moment.

It was all a cruel joke.

Our first of many circles for Everly outside our church.

I had to make the call on Monday to tell the surgeon with whom we had met the Thursday prior (remember that scare? Yes, that was the very same week as all ofthis!) of the new results. I received a phone call message later that day from him stating that “given the new Full Trisomy diagnosis the benefits of repairing her malrotated intestines would not outweigh the risks of surgery seeing that the prognosis in Trisomy 18 children is that they live less than 2 years.” **Please know that I still think he is a great surgeon from all I have heard and I honestly believe that this sentiment is not exclusive to him alone. Many use what they've been taught, statistics, neonatologist and geneticist recommendations, etc.**

Another cruel joke.

My daughter was offered this same repair not days before…what was so different about her now? She still has malrotation of her intestines and complications of which could turn into an emergency at some point just as cautioned us at the appointment.

Forget about repairing it and heart repair…ha!

Now, of course, I'm not going to just leave these issues like this and I have messages waiting to be returned and doctors to now visit, but I want you to know what it is like to have a child considered "not worthy" (my words, yes) of an operation, a repair, an intervention that would be offered to ANY other child without Trisomy 18. I now have to fight.

I’m defeated. I’m not going to lie.

I pray this feeling is temporary and that I will just pick myself right back up, dust myself off and get moving. I’m really starting to get Job and how he must have felt to some small extent. Setback after setback and still you must move. In the face of severe adversity,you must seek God because without Him, there is no hope.

I know all of this in my head, but my heart is in about a million pieces again.

Like I said, I will pick myself up but right now…

I. Am. Just. Here.

It all boils down to the fact that I will still praise Him while this storm rages. I know the blessings that He has provided and that He will continue to provide. I know that I will continue to ask for healing in her body and that I would ask for intercessory prayer for her. I have my arms around my little miracle whoI’ve been immeasurably blessed to hold for going on 9 months. I can’t discount the hugeness of this fact alone. We are SO blessed that she is still with us this many months later. I have two boys who believe in the power of our God and who in the face of what our family endures daily still hold Him in reverence. Our family has an amazing support system surrounding us that has kept us fed, uplifted and overall just wrapped in love. For that, we are blessed beyond measure.

I know in my broken and hurting heart that we will overcome this hurdle (though that word seems so insignificant in light of theenormity of this situation) but it’s going to take some time. This year has taken its toll and this pastweek was most certainly a pivotal point for me.

Your prayers, messages, texts, calls and emails are so treasured by me and I thank you for those over the past year.

This whole “prolonged grief” combined with the incredible joy of being Everly’s mom mixed together is an emotional and sometimes difficult journey.

I know it’s been hard with lots of twists and turns.

I know that it still continues.

I thank you for going alongside us.

With much love and appreciation,

Crystal