Dear Friends,

Today, our sweet Eva went to be with the Lord five years ago.  I have many emotions as I write to you.  One, I have never fully shared what happened to our family over that day, it is difficult, and I am nervous about putting it all out there publicly for anyone to read.  Two, I do not claim to be a “blogger” or “professional writer”, so I hope everyone can follow along.  By reading this post, I want people to see a mother, who wants to normalize the very never-ending grief of losing her child -there is no “moving on” from my child.  At the same time, There IS moving forward and finding beautiful things out of such horrible circumstances.  That you can live a happy life AND deal with the absolute roller-coaster of emotions that grief presents. Five years later, I am still learning that both paths are acceptable.

I go back to July 27, 2017 like it was yesterday.  My husband Fahr and I got up that morning with Eva sandwiched in between us.  We knew that at this point she was in “critical condition” per her Hospice team that visited frequently.  Leading up to July 27th there were signs that she was declining, but that morning we didn’t feel like anything was amiss. In fact, we felt she was quite peaceful. Yes, Eva was doing a lot of sleeping at this point. She was on oxygen 24/7, and her seizure activity that we could tell was minimal (that may because of the medicines we had to give her) but overall, she seemed comfortable.  Weeks leading up to this day had been a roller-coaster, so we were grateful Eva could rest.  Fahr and I both had a therapy session with our wonderful therapist, and then we prepared to see our Hospice team that morning for a check-in.  We had family that stayed with us for a couple weeks as Eva’s health declined, but that morning no one in our family had seen Eva when her Hospice team arrived.  Nothing could quite prepare us for what happened next.  Our wonderful nurse took one look at Eva and said, “we have hours.” Fahr and I were floored.  We had no clue that anything was amiss and yet there it was.  Slammed into our faces.  I feel I was in denial about it.  Like as a mom “I should know” but I didn’t have that feeling at all.  Our nurse is a great guy by the way and was not at all trying to be offensive.  He was doing his job.  A job he had experience with for a long time and sadly, seeing kids so often, he just knew.  I didn’t know this at the time, but my mom came around the corner when we were meeting with Eva’s Hospice team and she didn’t hear our conversation, but she too saw Eva and just knew today was it.  I still beat myself up about it, because again, as her mom “I should know”.  I didn’t.  Her Hospice team talked with us at length about how this might go, medicines to administer etc.  For anyone that doesn’t know, Eva had a Hospice team that monitored her and guided us as any “terminally ill” person would have, but Fahr and I were responsible for her day-in and day-out care.  Oxygen-we kept up with it.  G-tube – we fed Eva every meal through a tube to an opening in her stomach called a “button” and made sure it was always clean. Suction machine- we used frequently when we needed to help clear her airway. Medicines-we administered them. All of them.  We kept a log of what time and the date. We accumulated many notebooks full of dates and times over her short life.  We also had swabs with water to keep her mouth from being dry.  Our biggest fears were that either Eva would pass away in her sleep, and we couldn’t say good-bye, or we would be alone with her when she died.  For some reason, I needed our family and her Hospice team to be with us, to guide us in what we were going to experience and what medications to administer. That day, they spent the whole ENTIRE day with us-this was not a guarantee as they had other patients to go and visit.  Since we were at a tipping point, they stayed.  We are eternally grateful to those individuals.  After we got this news, our family was informed.  We had been wanting to take Eva on a walk to go see “her horses” something that she loved to do. But we didn’t go leading up to the 27th because we just felt she wasn’t up for it.  My mom knew this and said, “let’s go see her horses.”  Some of our family members were taken aback with her suggestion because they were just hearing this news about her declining health and that today was the day.  Also, Fahr told me later that our Hospice team did not think she was going to make it back from that walk.  Anyway, we decided we were going.  We walked down the street to “Eva’s horses” as we called them – with oxygen on board her stroller.  I still did not have that feeling.  A neighbor saw a group of us with Eva and asked if everything was alright.  I promptly snapped at him, “my daughter is dying.”  He never said anything else after that.  I don’t know why I said it because I didn’t feel it at all.  I also felt bad that I snapped at him.  I just don’t know what was going on inside my head at that point. Anyway, we keep walking, and another neighbor pulls her car over and talks to me.  For context, I asked my mom to share with a few neighbors that Eva was declining. This particular day, our lovely neighbor did not know what she was walking into.  I talked with her for a minute as she shared her sorrow for Eva.  The next thing I knew my mom runs toward me with urgency, interrupts our conversation, looks right at me, and says something to the effect of, “Jamie, you have got to get to Eva right now.” Right then I knew.  It hit me like a ton of bricks.  I ran as fast as I could down the street to meet her at the horses.  I grabbed Eva, we said one last good-bye to her horses we named Stanley, Jerry, and Clyde and then we rushed back to the house. Luckily, my dad brought the car with us just in case.  I screamed as I held Eva in my arms.  I screamed for God to save her, to not take her from me.  I screamed sounds that only a mother who knows her child is dying would sound like.  I screamed everything I had in that car.  When we got back to the house, I was numb.  Fahr was trying to hold it all together.  We took Eva with us to the couch, and we held her in our arms.  She was still so peaceful, but her color was fading. Our Hospice team was walking back with the other family members that went with us to the horses.  They came in the door with Eva still alive and breathing.  At some point, we made the decision with her Hospice team to turn off the oxygen. Her breath was getting shallower, and the oxygen wasn’t helping.  We were guided on what medicines to give to keep her comfortable and her Hospice team was with us every step.  For some reason, I felt the need to put on her favorite songs.  It calmed all of us.  We all circled around Eva. Not everyone in our family that lived in town was there, but they were enroute.  Through all this Eva knew and she waited for them. I won’t go into full details about what happened next, but it was beautiful, sad, guttural all at the same time.  Every single person in that room got to say good-bye to Eva. Every. Single. One.  I whispered in her ear many things that I would like to keep private, but the one thing I will say is, I told her, “It’s OK, you can go, Mommy will be fine.”  With that, Eva took one last deep breath. Fahr and I handed her to our Lord Jesus to take care of her forever in heaven as “Somewhere Over the Rainbow” played in the background.  When our nurse found it appropriate, he came over and pronounced Eva had passed away at 2:22PM.   

I must share one more important piece that happened that day.  We made funeral arrangements for our daughter months ago, so that when the time came, we were ready (that was a very helpful recommendation from our Hospice team).  It turns out we knew the funeral home very well, as they are friends of our family.  We were lucky to have made sure that one of the Directors would come to our home to care for Eva.  It was a comfort.  It was also very hard to let Eva go. I would also like to keep further details private, but I will say, we requested that our friend, the Funeral Director, would sing “Twinkle, Twinkle, Little Star” another Eva favorite, all the way from our home to the funeral home- and he did.

I share all of this to share my vulnerability. To share for every single mother and father that has ever lost their child to WWS or any other horrible thing, the courage to share it if they want no matter how many years has passed. Grief is a lonely place, and to be able to share is helpful. Will every story end like ours with a peaceful passing of a loved one? No, sadly it won’t. I realize that was a gift from God. But every story that is told allows for mothers and fathers everywhere to come together in grief and be OK. I want parents who have lost to talk about things that “no one talks about.”  This day, this story and losing Eva has weighed on my heart for a long time.  I felt after five years, I was ready, and it was appropriate I share it. The stigma that we should just “get over it” or you have “grieved enough” is horrible to say to anyone who has felt loss, let alone a child.  Also, saying things like “I can’t imagine, I have a daughter” or “God got another Angel” isn’t helpful, it is hurtful.  When I hear that, it’s like I am glad you don’t have to imagine my never-ending grief that will stay with me forever.  Also, God DID get another Angel in my Eva, but it is not appropriate to say it out loud to anyone who has lost their child.  We must do better.  Also, expecting any mother or father to be the “way they were” is just not possible.  A piece of your soul dies with your child, and it will not return in this lifetime. A special friend wrote me the other day, “it becomes who you are.”  I agree.  

Five years later, I still have good days and bad days – it’s OK.  I suffer from Generalized Anxiety Disorder that is heightened because I know the pain and suffering of losing my most precious daughter, and I fear loss of any kind now. I also never hide from telling people I lost Eva, but sometimes it is exhausting taking on their emotions when they find out she died. The question of, “how many children do you have?” can be a hard one for me sometimes, because I know the reaction to what is coming. My husband and I will be in life-long therapy, because we know that losing a child can put such a strain on our relationship as men and women process grief differently.  We want to keep our relationship healthy.  Also, therapy is the best thing anyone can do to deal with loss and grief.  I feel I got the short end sometimes because I have lost out on five years of memories that we could have made together.  Never being able to see Eva walk, talk or fully eat by mouth still hurts. Watching our friends’ children, the same age reach milestones that Eva never could hurts – it’s not their fault at all.  It’s important to convey that, we love them so much and with the hurt, comes joy seeing her friends succeed as we imagine she would have too. Again, it’s the nature of things no one tells you when you lose your child. 

A good strong faith in God has also gotten me through some very tough times in my life, but I have also wrestled with God after losing Eva.  I am grateful to him for all the blessings he has given me, but I must be honest here.  I know, for someone who received a gift of a peaceful passing, how can I be mad?  Well, the way I see it, I would have devoted my whole life to caring for Eva.  I was OK with putting her first and caring for her every single day of her life whether it be 18 months or 50 years old.  I was OK with not having any more children, to not burden them if something should happen to me. I am mad that he took her from me. I will always wonder why he didn’t heal her and let me take care of her. We prayed endlessly for her to be healed. I must keep reminding myself that God was doing what was BEST for Eva – ending her suffering with this horrible disease.  Plus, I know without a doubt that God took care of and blessed Eva every step of the way from the moment I was pregnant with her, throughout her short life and ultimately her death. When I think of that I can rest and know God gives me grace to ponder such things.   I am still working on forgiving myself as well.  As a mom, you feel responsible for everything, and sometimes I feel punished because it feels like I must carry this life-long sentence of grief for Eva. 

The good news is that TIME allows for parts of you to heal.  In the last five years, my experience so far is that it is a long process, but another very special person told us once, “grief is like a backpack, it starts off heavy, you will always carry it, but hopefully over time it becomes lighter.”  I see that as I reflect.  I cannot fix that Eva died; I cannot fix that I have anxiety that makes her death even more difficult to handle at times. But I can fight every day to make her proud of me.  When I spoke at her funeral, I told her I would not be “bitter.” That has been easier said then done, but I will not succumb to being a bitter person and I will not be a victim.  I can smile again, I can laugh again, and I think of Eva a lot with happiness instead of sadness. Her light and love she brought into this world help fill me up when I am down.  It also helps that we have a solid group of friends and family that have walked through the fire with us these last five years. I have also gone on to have 2 more children that God has given to us.  We are grateful to have them in our lives.  

Also, finding purpose in your life can help.  In 2018, Fahr and I started the Eva Juneja Foundation®. It has been a wonderful experience, and a challenging one as well.  To be honest, sometimes it’s difficult to work on the Foundation because it is still painful to think of our daughter being gone, and the purpose of our Foundation is all about Eva. But it is also heart-warming to know that through my daughter and sharing her story, I am making a difference to someone else.  I also don’t do anything for any glory.  All that goes to God and to Eva for giving me the opportunity to help others.  She gives me the passion to help others and share her light. Fahr would say the same. 

Eva has guided me along the last five years, without a doubt.  Every butterfly I see – it’s Eva.  Every beautiful thing I see in nature – it’s Eva.  Every rainbow – it’s Eva.  The first star I see in the sky- it’s Eva. Every time I hear “Somewhere Over the Rainbow” – it’s Eva.  Every time I am in or near water- I think of Eva and her love of water. Every chocolate milkshake I drink – I think of Eva. Every horse I see- I think of Eva. I see Eva in my 2 other children at times – they all resemble each other. Every dance party in the kitchen- I think of Eva.

Eva.  The center of my universe.  The one who made me a mom.  The one that made me closer to God then I ever thought possible.  The one who opened people’s eyes to see Eva and not the things that held her back. The one that gave me the guts and courage to bring her into the world, and to hold and hug her as she left it. The one who encourages me to never give up, even when I want to.  The one who is in my heart and will never leave it.  The one that I wish were here every day. I miss Eva so much.

To all the Walker-Warburg Syndrome (WWS) families out there that have lost children to this horrible disease, my heart is with you friends. I walk this path and the road is long and difficult.  I pray you never give up.  To all the current WWS families and babies, I pray for strength and courage for you to face every day.  I wish you the opportunity to go make happy memories with your children. To all the mothers and fathers out there that have lost children for other reasons, I am sorry, and I pray for you to continue living life for loved ones who could not. I also hope you can share your stories with others, so that you feel less alone.  For everyone else reading this, I hope you can understand that grief is forever.  There is no greater honor than grieving for someone you love.  It is an honor and a privilege to be Eva’s mom. Thank you for reading.

Much love,