Family; Lost and Found

When my daughter Alyssa died, I had no other kids.  She was my first and my only.  When she died, I was a Mother without a child.  I always knew I wanted more kids, so a year after Alyssa died ,we took a leap of faith.  We had another beautiful baby girl and two years after that we had a boy.

I knew I wanted my kids to know about Alyssa.  It was very important for me that she never be forgotten.  When they were old enough I showed them pictures of Alyssa and told them her name over and over again.  I told them that Alyssa was their sister, but she died.  When they were really little I asked them if they could see her.  I had heard that children before they can talk can see things on the “other side.” Unfortunately I never got a definite sign about that. 

When they got a little older they started asking me more questions about Alyssa.  Why did she die?  Who was taking care of her?  If she wasn’t here, how was she part of our family? I told them that there was a problem with the inside of her body and it didn’t work the way it was supposed to.  I explained that your heart has to beat for anyone to live.  She had a problem with her heart and it stopped working…so she died. 

I believe in afterlife, so I tried to tell my kids that there is a part of us that will always live and be with God, but the body dies if it doesn’t work right.

Both my kids at different times still ask me questions about Alyssa.  I always tell them the truth to the best of my ability and I try to make my responses simple.  Sometimes my daughter Gabby gets sad because she thinks it is not fair that she never got to know Alyssa.

I tell her I am sad too and maybe they knew each other before she was born. She tells me she doesn’t remember.   I guess a lot of questions will always be unanswered for all of us.

I wear a necklace with all three of my kid’s pictures on it from when they were eighteen months old.  People comment on my necklace almost daily.  If my kids are with me they like to proudly tell people which picture is of them. My son likes to show them the picture of Alyssa and explain that this is his sister, but now she is dead.  It usually shocks people but I love that both my kids want to include her in our family. 

It has been 14 years since my daughter Alyssa died.  She is and always will be a part of our family.  We have a foundation in her memory called the Alyssa Parker Memorial Fund.  Our hope is to do projects in our area and sometimes further that help children and families.  I want my kids to understand not only do I want everyone to know about all my kids, but also it is so important to give back.  By giving back it will eventually give meaning to a painful, yet meaningful time in our lives. 



Between Mothers: caregiving and bereavement

Dear Mothers,

As I write this, my heart is breaking for you and what will be!  As hard as your child’s care is now (the pain, itching, lack of sleep, medicines, dressings, main lines, doctor’s appointments, surgeries, hospital stays…did I say lack of sleep?) it will be ten times harder when it is taken away! Ok,… a thousand times harder!

For two years, two months I took care of my daughter, Alyssa.   It was difficult physically, emotionally and spiritually, but she was alive! I needed her to be alive!  She was my life.  The love of my life!   I did everything I could to make her comfortable and happy.  That was my goal!  I had the most important job in the world!  

Not only did we have no sleep, doctor and clinic visits, hospital stays, lots of medicine, itching and pain.  We also tried chiropractors, acupuncturists, hands on healers, energy healers, light belts, and homeopathic remedies.  We tried everything! It all worked for awhile….and then it didn’t. 

The most important thing is your child’s life!  When your child dies and you are the caregiver, it is as if your purpose for living dies along with them. 

Alyssa was our only child when she died.  It took me a long time to see any purpose for “going on.” After all the guests left, our house was very empty.  I had given back all the equipment, threw away the medicine…and I felt all alone.  What was I going to do with my life now that my child is dead?  Alyssa and I were up half the night, every night when she was alive. (unless we had a nurse!)  Her itching got very bad at night.  After she died I would wake up in the middle of the night…and then it would hit me like a ton of bricks…there was nothing to do. She was really gone! Being a caregiver, you are so in tune with your child.  I must have watched Alyssa breathe 1000 times a day!  I was aware of every sound, every sigh, her different cries, her sleeping schedule, her pain level and her itching level. I used to help her scratch her body because I was more gentle than she was.  Her liver disease made her itchy from the inside, out.  It was torture for both of us!   

She had a very complicated medicine schedule that I kept track of. I also kept track of everything she ate, what her stool looked like.  Was she digesting?  How much she slept…if she slept.   

Through all of it I tried to make our lives as normal as possible in between all the other stuff.  We went out with friends, had play dates, ate out at restaurants, danced to music, and went to school. She loved Sees candy and Mickey Mouse.  She said hi to people as they walked by us staring when we were in the mall.  People were drawn to her!

Time is a strange thing after someone dies.  Every minute feels like hours.  I felt like I was walking through sludge.  The air felt thick. It felt difficult to move. I felt so empty! Everything reminded me of her:  Music and food, our house, the park, stores, Oprah and Mickey Mouse.  I felt numb and out of my body and in so much pain at the same time.  The loss of someone’s physical being is excruciating!! My friends and family didn’t  know what to say to me and my husband or how to treat us.  In all my pain, I had to tell people what I wanted…what was ok.  People just don’t know! They didn’t know that I wanted to talk about her all the time, that I needed to cry and have loving, supportive people around me that were okay with that!  Most of the time I wanted to cry alone.  

It was painful and beautiful at the same time as our friend’s kids asked about her.  They were trying to understand too! I was okay answering questions from them. I didn’t want their parents Shushing them!  When I cried, I told the kids I was sad because she died and that was okay. I wanted my friends to know that I still wanted to be invited to birthday parties and celebrations, but I might not come.  I wanted them to know it was okay to talk about her!  When they told me they were thinking of her and missed her, it meant a lot to me!

There is nothing as important as taking care of your child!  Nothing will ever fill that need to keep them safe, that instinct to protect them.  So, when Alyssa died I felt very lost and uncertain about my place in the world for a long time. 

So, how did I get through it?  It took a LONG time!  I am not sure exactly when I snapped out of caregiver mode.  Maybe 6 months or a year?   I switched for awhile to taking care of myself out of necessity.  I couldn’t breathe.  I couldn’t function. 

A few things helped me get through the painful beginning of grieving. Yoga helped me a lot!  It reminded me to breathe when breathing was so painful.  It gave me a chance to be in my body and cry and stretch and release all that was buried within me.  

A friend of mine asked me what I was going to do with my time now that Alyssa was dead.  I told her I had bags full of pictures.  She encouraged me to come over and make a scrapbook.  It took me two years to finish 2 scrapbooks.  I cried and cried and wrote and laughed and cried some more, but it was great therapy for me. 

Another friend helped us start a foundation in memory of our daughter.  (The Alyssa Parker Memorial Fund.)  It became very important to me to keep Alyssa’s memory alive.  I look forward to the annual fundraiser we do every year for our friends and family to talk to people that knew her and become friends with others who care about children and families. We have done some great things in our community and even globally in Alyssa’s name. She continues to live on through our good work.  She has an exhibit at the Zimmer Children’s Museum in Los Angeles, her funds have renovated the children’s playroom at the Tiverton House across the street from UCLA Hospital where families come from all over with their sick children to get treatment and stay for a small fee.  Alyssa’s fund sent money to Uganda to help build a health clinic.   In Israel, there is a plaque with Alyssa’s name on it because we had trees planted in Jerusalem.

We are now raising money for Kristie’s Place, a much needed end of life care facility in Los Angeles. 

There are people that didn’t know Alyssa, but know of our foundation.  I am happy to tell them about her and how she made a difference in this world even in her short life.

None of this is easy, but I can tell you it does get easier. It takes a lot of time and everyone is on their own time, but you won’t feel so devastated and lost forever.  I promise!

A side note:  Everything happened so quickly after Alyssa died.  We had to make  decisions that carried a lifetime of consequences. Looking back with my thirteen year perspective I wish I wouldn’t have buried Alyssa with her Mickey and Minnie doll that she had carried everywhere with her.  I wish I would have kept them for me! (Something tangible that I could hold on to.)  Also, don’t wash your child’s clothes right away.  Their smell lingers.  When my Mom and Sister in-law washed everything trying to help out, I was devastated when I couldn’t “smell her” anymore.  These things seemed right at the time, but I have always regretted those decisions.  

But I am proud of how I cared for Alyssa in life as well as death.  

What makes one person plummet, while others continue to soar or at least wade?

 I always had a big fear of death before my daughter was born.  I had seen my husband’s Grandmother right before she died and I was pretty freaked out!  My friend recommended a few books for me to help me deal with my fear.   The first book was “Final Gifts,” about nurses who observed similar patterns in their patients right before death.  The next book was “We Don’t Die,” about a medium and his experiences.  The third book was “Many Lives, Many Masters,” about a psychiatrist who took a patient to a past life in a regression and had to rethink his belief about life and death.

When my daughter, Alyssa was born with a severe heart defect and a bowel obstruction, and then later diagnosed with Alagille Syndrome (many organs were affected) it was an understatement to say I was devastated!  I mourned for Alyssa and for me!  I mourned for the loss of our normal life! And I feared the future.

I also thought a lot about those 3 books I had read.  What if it was true that we were here on this Earth to learn lessons and “fulfill destiny?” Where did that leave our family?  My innocent child was in pain!  Was this destiny?  To see her suffer?  Did we agree to this horror before we were ever born?  How could that be?  I had a million questions.  I was angry at God, and at all the families who had normal kids and could complain about teething as their worst time! So I started reading more books to try and understand how and why this happened.   I was hoping some explanation I might find would satisfy me! 

My daughter lived for 2 years, 2 months.  She was the light of my life!  The pain was beyond unbearable when she died and continued to be for a long time!  But, I would not take one second away from her life or wish she was never born to take away my pain.  She is my gift, my angel and my teacher. 

My husband and I went to see a medium after Alyssa died.  What he said gave me a lot of peace! Without a doubt I know she came through to him that day.   I needed to know she was okay.  If she was ok I would learn to be okay too!

I have to say, with all my searching and reading, there will always be some questions that will never be answered here on Earth. But I do believe in a higher power.  I do believe in life after death. I do believe Alyssa is sometimes close by.  I miss with all my heart hugging her and holding her, but I know we will be together again someday!



Is it ok for RN’s or staff when someone passes away to say what our beliefs are? Example: “Your child will fly with the angels!” Is it offensive?

My daughter Alyssa died 13 years ago.  Soon after she died we got involved with Compassionate Friends.  We went for years for support and then for several years my husband and I ran our local chapter.  Almost every time we go to our group meeting, we hear the same thing about the “stupid comments” people make to try and comfort us. 13 years later I know it is all well intended, but immediately after a child dies, no parent wants to hear; “It is for the best.”  “She/he is in a better place.”  “It is God’s will.”  “You wouldn’t want her/him to suffer anymore, would you?”  “You will have other children.”  “You are so strong. You will get through this!”  The list goes on and on.

My suggestion to anyone who wants to comfort a bereaved parent is to say, “I am so sorry!” and “I am here if you need me.”  And then stop!  In our numb state we are not ready to hear anything else.  13 years later, I know Alyssa is ok and in a better place.  And I understand this was meant to be, even though it sucks!!!  But the first few years of grief are so raw, your good intentions will be missed if you say anything else!

I manage fear by...

When I first found out Alyssa had a severe heart defect, my second emotion was fear.  My first was disbelief.  How did this happen?  To me?  To her? What does this mean for our future?  Where do we go from here?

 How are you not fearful when your child is sick or dying?  All I wanted to do was protect her, take the pain/ itching away, tell her it would be okay….tell myself it would be okay.  This is not how life was supposed to go!!

That first day (Alyssa was nine hours old) when we found out there was a problem with our beautiful daughter, was the beginning of a long road for us.  Fear was one of the many emotions I felt. 

Fear can overtake you, paralyze you, blind you, suffocate you.  I never stated my fears out loud (maybe once in awhile to my husband) but it lived in me every day…deep in the pit of my stomach.  Hanging heavy on my heart. 

When we were in the hospital, I was on “automatic mode.” I did what needed to be done to make sure Alyssa was as comfortable as possible.  It wasn’t until I was alone or when everyone was asleep that I allowed myself to go “there.” To that place of fear.  

 It is amazing in a way how my body protected me. I couldn’t fathom that things could get worse.  And I always believed that things would get better.  I had to.  This was my child!  This was our life (lives)!

I was fearful most of the time when things were uncertain.  And there is so much uncertainty. It would be so nice if I could always be in control.  I wish life worked that way!  Some fear is normal, but it is so important to have support. Someone you can cry with.  Someone who will be there for you no matter what.  No one knows what the future will be for any of us. Try not to think too far ahead.

Remember…take one day at a time, one moment at a time, one breath at a time.  What we are all living is horror. It is important to do what you and your family need to keep going.   It is so important to breathe!!!

There came a time, after Alyssa died, my husband and I went to talk to the neurosurgeon that did her last surgery.  She had died in surgery and I had a list of questions two pages long.  I was going to prove that this doctor “killed” her.  After our meeting I walked away and realized that all of “this”….her surgery, her life, her sickness was out of my control.  At that moment I had to surrender to the fact that a divine decision had been made and even though I didn’t like it, and I could kick and scream at the unfairness of it all, it was done.  There was no turning back!

So, here I am 12 ½ years later.  I am still standing. I am even…dare I say it?.. happy. I didn’t know my own strength and what I could survive until I came out the other side.  I had to let go of a lot of fear and try and live each day and be grateful and know that I have been through the worst.  And I survived!

Where can I find hope in the face of death?

Throughout my daughter’s 2 year life, my Mother was the only one who asked me out loud, “Have you ever thought about what you would do if Alyssa dies?”

Are you kidding me?.... I think (thought) about it every day!  But I couldn’t really go there.  What parent could go there?  The idea of living without her for even a day was more than I thought my heart could handle.  (Who knew that 12 years after Alyssa’s death, I would still be standing to talk about it)!

There was never a time when a doctor told me Alyssa was going to die.  But with every health complication, the medical staff was very honest with me about not knowing what will be in the future.  Each problem individually was fixable, but put together no one knew for sure. 

More than a few times I asked what the long term outlook might be: surgeries, transplants, therapy, medication, special schools, IEP’s, shadow teachers, maybe a wheelchair…the list goes on and on.  Every doctor told me they just weren’t sure.  Once her heart was fixed they could do such and such…once her bowel was repaired then they would know such in such.

I knew Alyssa was “off” around December (1996).  Her skin was getting darker.  She was getting puffier.  She was more agitated.  I asked the doctors about the changes, but on paper they all said her numbers were normal for her.  I felt very uneasy that New Years.  I told my husband on New Year’s Eve that I felt like the other shoe was going to drop.  I felt really sad and didn’t know why. 

In March, the month she died, I got an itch to go to Disneyland right away!  Looking back, I think my soul knew it was getting closer.  “I” didn’t know.

I was so glad I listened to that itch.  What a day we had!  One we will never forget! 

The day she died, looking back, my soul did know she was leaving.  My heart didn’t know.  “I” still didn’t know.  How could I?  How do you ever really believe it is going to happen until it does?  Alyssa went in for surgery to remove a blood clot from her brain.  I told the doctors that day I didn’t know if she was strong enough for surgery.  They told me it had to be done or other complications would arise.  I asked them how many people had died in this surgery.  I was told none.  (some people had complications after surgery, but this was considered a pretty routine procedure)…for brain surgery anyway!

Alyssa died in surgery.  Her heart stopped and she couldn’t be revived.  I was in the waiting room in a deep sleep when she died.  My husband had to shake me awake when the doctors came to tell us the most horrific news I will ever hear.  Actually they never told us.  I had to ask.  But I understand how hard that must have been for the doctors. ( Our worst nightmare…and theirs).  They were explaining what had happened in surgery, but they couldn’t bring themselves to say she died.  I asked.

Looking back, would I have wanted someone to tell me she was dying?  I don’t think I would have been ready to hear that.  But really…is a parent ever ready?  Our situation was different.  Alyssa didn’t have a terminal diagnosis.  All but a half a handful of medical professionals were very careful and appropriate with how they dealt with our family.  The ones that were honest and compassionate did the best with me.  I don’t think anyone tried to tell me the inevitable.  If they did then I totally missed it!

I think the one thing I would pass on is this: this is our child! Remember that even though the medical staff deals with death all the time, this is the first and only time (we hope) for us.  It is new and awful and scary and so painful. Please be compassionate and empathetic.  Try for a minute to imagine what we are going through.  We really appreciate your human-ness!

When did you first hear of palliative care?

The first time I heard about Palliative care was last year when I was asked to speak at the Pediatric Palliative Care Coalition’s retreat in Lake Arrowhead.  I was excited to find out there would be doctors and nurses and medical staff all willing to hear what we (the parents) wanted to say about our children and the experience we had in the hospital.  Everyone seemed open to wanting change and awareness for the families that were going through one of the most devastating processes.  To see your child in pain and not be able to help her/him goes against every instinct a parent has, to protect our children at all costs.

Our situation was a little different because Alyssa was born with a multitude of physical problems (Alagille Syndrome) and no one in the medical community knew exactly what her future would be. She was never considered terminal at any time.  I am not sure that for us Palliative care would have been appropriate. I know that it was never offered.   But I love the idea of what it can/will do for children and their families now and in the future.  To be able to come together with the medical community and “make a plan” for our children and have dialogue about our children’s needs. To make our needs heard.  To make our children more comfortable and still fight for their lives until the bitter end…it is the only way it should be!!  Palliative care is necessary!! 

What kinds of support has your family received that was helpful?

When a child is sick and especially when a child dies, unfortunately there is not a lot people can say that is helpful.  The things that stand out in my mind when it comes to support are not the things people said, because there are no words, but what they did that touched me.  Everyone feels sorry for you.  And it seems everyone wants a job to do so that they feel like they have “helped.”  One family had dinner delivered one night to us.  They told us it would be all taken care of.  It would be one less thing for us to think about.  A couple girlfriends took me to lunch and let me sulk and cry if I needed to. They just listened.   Another friend let me bring my laundry over because we were living in an apartment and it was hard to fit in the laundry mat with all the doctor visits.   Just knowing that people were thinking of us and Alyssa and praying for us helped.  The people that allowed us to do whatever we needed to do without judging were the most support for us.  

What kinds of support has your family received that was not helpful?

I think that most people have good intentions.  But people say the strangest things to you!  The things that used to drive me up the wall were, “it’s God’s will…” or “God only gives you what you can handle.”

How is that helpful and supportive?  I wanted to tell them, “then God’s will sucks and I am not handling this very well!!”

We also got a lot of unsolicited advice about what might “help” the situation, or what might work better. Or the doctor knows best…  xxxx that!!

Better that people are quiet and let you know that they are here if you need them!

Make a list of three insights you have gained through the journey of caring for your child or bereavement that you wished you would have known before you started.

1. We have no control! That is one of my life lessons I believe. My whole life I tried to control things. I guess it made me feel safe. But when my daughter was born with so many health problems I began to realize how little control we do have over anything! I needed to know everything the doctors were doing and make sure they were giving the right medicine and being gentle enough and doing the right thing for all of us. But when it came down to it, I couldn’t control when Alyssa’s body was going to start absorbing or if her pulmonary artery was going to grow enough to do surgery or if we could control the itching that would torment her and drive me to insanity trying to make her comfortable. When she died it became even more clear that there is a higher “order” to things that we may never understand. It is what it is. Like it or not! But this painful process has really led me to let go of the control I thought I had. What will be, will be. So, take a breath and surrender!
2. Be in the present! It is everyone’s nature to think ahead or worry about what will be or what we could have done. But in the end we only have the present moment. Try and focus on that as much as you can.
3. Things are always changing. It is the good and the bad of life. When we are having our worst day and we don’t think we will survive, know that you won’t feel that way forever or next week or even tomorrow. And on our best days, try to enjoy it, because we don’t know what will be in future.

Keep breathing and be strong.