Letting Go

On this last (extra) day of February I feel it's fitting to post this photo. My dear friend Jen L Baker's daughter, Jessi, passed away just a couple of days ago from congestive heart failure due to CHDs and leukemia, etc. As you all know my daughter, Angel Jess passed away from CHDs and Ischemic Bowel Syndrome 5 years ago.

My heart has been so heavy knowing that my dear friend and her family are going through the heartbreak of losing a child too. A lot of what I went through with Jessica has come back to me. Watching Jessica take her final breath and watching her heart stop forever came back as if it happened yesterday. There are times that my loss feels so raw and all I want to do is hold my daughter one more time. As I count the months and years that go by at times I still feel as if I'm in that moment again, telling her to go to the light while on the inside I was crying, "Don't leave me!!!" That's the ultimate sacrifice. Thinking of her welfare above my own. That's what Jen had to do as well.

Praying for your child to be taken in order for their suffering to end is the least selfish thing a parent can do for their dying child. We fought for our daughters their whole lives, getting them the best care they deserve, best possible education, best therapies, home nurses, fighting with insurance companies, medical supply companies and sometimes fighting with doctors and other medical professionals to LISTEN to us because we're the ones who are there 24/7 and we know our children better than anyone else. For 22 years + 4 months for me and almost 22 years for Jen, the last thing we ever wanted to do was to pray for our daughters to leave us but when they have fought so long and so hard and are so tired.... that's when we tell them that it's time to go. We say that will be ok even if we feel like we're lying to them, that's what we say so that they will be able to go. Because we love them. that. much.

I don't have all the answers but grief is something we all must endure sometime in our lives. Grief is messy, it's ugly and it attacks at a whim. There is no timeline for grief and if you think that there are only 5 stages to it or that they come in a particular order, ... you're wrong. Grief has made me say things I never would have said or cried when I never would have cried. It has made me tired, achy and depressed. It has also made me more compassionate and to see the eternal aspects of life with a whole new meaning.

Please be patient with those of us who are still grieving or have just begun this very difficult path. Parents of special needs, medically fragile children like Jen and I have experienced what they call "Anticipatory grief" for many years, not from us sitting around feeling sorry for ourselves, but from watching our children fight for their lives again and again and again over the years. Having medical professionals tell us that our child could die at any moment doesn't help that anxiety any either. I have suffered from PTSD for many years having seen my child go through countless hospitalizations, many surgeries including 5 heart surgeries, suffering strokes, being blind and paralyzed, etc. Jessica's death was the ultimate cause of PTSD and I still have flashbacks of the most difficult times in Jessica's life and her death. Her long, painful, difficult death.

This life is not one for the weak of heart.... except that I used to be one of those. I used to throw up in the downstairs bathroom as soon as I got to the hospital before I could go upstairs to see my newborn baby in the PICU when she was first diagnosed with her CHDs. There were times when I had to pray to God saying, "You gave me this child, please make my stomach strong enough that I can change her bandages without throwing up on them." I was one who sat and prayed over her for hours at a time, walking the halls of the hospital with her, doing therapies with her and sitting up with her at night giving her breathing treatments so that she could breathe to live one more day. I was the one who stayed up all night with her as she got older because her anxiety got so bad at night. I was the one who spent the most time with her and did the most for her... and I was the lucky one. My husband had to work to provide a roof over our heads, my sons had to go to school. I was the one who got to spend time watching tv with her late into the night, talking with her, listening to her, calming her fears and holding her. I am the one who benefitted from her beautiful spirit the most and I would do it all over again in a heartbeat if it were asked of me to do again.

I know that a lot of other CHD moms, dads and other parents of medically fragile children have been down this road. I know you sacrifice a lot for your children and I see you. I see your sacrifices and your pain but I see the love that you have for your child and it makes me smile. Big.

So on this last day of CHD Awareness month I want to leave with you this image of my husband and I saying 'good bye for now' to our beautiful angel. Far too many CHD families have to say good bye to their children because CHD or CHD-related diseases claimed their lives too soon.

Saying Goodbye ~ but only for a time

Continuing with CHD Awareness I am posting a photo from a very difficult time in our lives. I haven't shared it with anyone until now. This was something that I knew was going to happen from the time Angel Jess was only 6 years old but since she kept pulling through each and every major illness, heart issues, GI issues and even lung bleeds it seemed almost impossible that my worst nightmare would actually come true. Sadly, this is what CHD looks like for far too many families.

It was hard for me to share this tender moment of Karl and I saying goodbye to our beautiful daughter.  We carefully chose her pink casket with the light pink lining.  We were given a beautiful tiara for her to wear and a friend sent her a heart pillow with roses on it to place in her hands.  We didn't get a photo of that pillow which made me sad but things happened so fast. It arrived late and someone brought it in to us right before the services started.  It's ok, we truly appreciate the beautiful gift.

One day in July of 2010, out of the blue Jessica started talking about her cousin Marcus who had passed away in 2008.  She suddenly changed the subject towards herself and that she wanted to be buried in a white dress with pink flowers on it.  We had no idea that she would need it in just a few months!  When it became evident that she did not have much time left, my sister Karen sent us this beautiful white dress and I hand-sewed the pink flowers onto it. The dress is spread out on top of a Harry Potter quilt that one of Jessica's teachers (Barb) made for her. 

Here's a close up of the little pink roses and lace.

One of Jessica's e-pals, Matt (also a CHD survivor), sent her this little angel many years ago.  I pinned it onto the dress as a symbol of his love.  

I posted more photos of the flowers that we received in this post HERE.  

My husband Karl and I have been married almost 30 years (in April!).  We were married in the Mesa Arizona Temple of the Church of Jesus Christ of Latter Day Saints.  We believe in being sealed together forever in these temples where there are no "until death do we part".  Our children are sealed to us forever as well.  If you look to the left of my husband's shoulder you can see a photo of that very same temple hanging on the wall.  We did not put that photo there.  It was already on the wall.  How amazing it is to look at this photo and to see that reminder that Jessica will remain our daughter for all eternity!  

Our Mesa Arizona Temple of the Church of Jesus Christ of Latter Day Saints also has a Visitor's Center where the public can go and learn about our beliefs.  If you don't live close enough to go there and would like to know more then please visit LDS.ORG .  There's a lot of good stuff on there!  

There isn't a day that goes by that I don't think about my beautiful Angel Jessica Marie.  I miss her so very much but I am soooo thankful that she will never again suffer the pain and trauma that she endured in this life.  She was so beautiful in this dress and I envision her dancing, singing and chasing butterflies in heaven, free of all the diseases that plagued her body.  

Fly free my beautiful angel princess!  

I miss your beautiful smile

I miss your sweet smile, my beautiful daughter Jessica. This is how I see you in my mind only without the oxygen and glasses. Smiling, dancing and helping everyone you come in contact with. Your heart was so big that it had to have CHD so it could be enlarged to contain only a portion of the love you had to give. I can only imagine how much more you do every day for others now that your broken mortal heart is no longer holding you back. Fly free my sweet girl, until I see you again. }i{ 

Grieving - two years later

It's still so hard to believe that my "baby girl" is gone.  I still feel as though she is in her bedroom waiting for me to go attend to her.  The past several years she spent most of her time in her room, on her hospital bed, hanging out, playing her games, watching tv, drawing her sweet drawings and writing her stories.  Of course she didn't stay in her room for too long... she thought she needed to go and find me. Since my husband built me a craft room I've spent a good part of my time in there so Jessica would come and find me.  Every 5 minutes.  LOL  I've been adjusting to not having someone interrupt me every 5 minutes while working on a project.  I knew I would miss her coming in to talk to me and I do.  I cherish the memories of her hanging out with me and us working on cards or other projects together whether it's been in my craft room or on her bedroom.  I cherish the time I had with her.

Jessica and me making a card for Grandma's birthday.

 Jessica working hard on her project.  

Notice her Barbie castle in the background.

I had no idea that it would still be this hard two years after she died.   Oh, what I wouldn't give to have her here to make just one more card with me.   

"Happy" Mother's Day?

I'm having an emotional Mother's Day missing my girl.  I had to leave church early because the tears started flowing and I couldn't make them stop.  My sweet husband and I went to the cemetery and gave Jessica new wind chimes.  Karl pulled a branch down from the nearby tree and tied the old wind chimes to it so they hang right over Jessica's headstone.  We spent some time enjoying a warm Spring day, soft breeze in our faces and hair, thinking about our girl.

I miss her laugh, I miss her smile, her stories and her imagination, and most of all I miss her hugs and kisses.  I cherish the last FULL hug I received from her just the day before she fell so incredibly ill and was bedridden.  Karl and I had found out from the GI doctor that she was in starvation mode (just a couple of days prior) and it was just a matter of time until she would leave us.  Jess and I were standing in the doorway of the kitchen and she came up to me and leaned on me and gave me a looooong hug.  I think she knew.  I think she needed that long, full-body hug just as much as I did.  I remember thinking, I need to cherish this because it could be the last FULL hug I ever get from her - and it was.  I felt her head on my shoulder and her hair on my cheek.  Her arms wrapped around me as she leaned on me for support.  She needed my support physically and emotionally and I'm so glad that I could give that to her.  Yes, I have some regrets but I did the best that I could.  I may have missed out on a lot of fun activities while I stayed at home caring for a very ill child for 22 years but I knew I was doing everything I could to care for my very precious children.  I'm so thankful that I was able to be a stay-at-home mom not only for Jess but for my sons as well.  Jessica wasn't any ordinary child - she was extraordinary and she needed far more than any other child... at the same time she taught me more than anybody or anything could ever teach me.  So I worked hard and made the sacrifices that I needed to in order to care for this extraordinary child and my other extraordinary children because I knew that's what God wanted me to do.  My brother, Brian Taylor asked me, "How many other people can say that?  How many people can actually say that they've spent the last 22 years doing what God wanted them to do?"  Thank you for that, Brian.  I still want to do what the Lord wants me to do so I'm trying to find my way, setting new goals and reaching out to others.  But today I miss my girl.  I'm sure I'll feel a little better tomorrow but sometimes you have to feel bad in order to feel better.  Thank you all for your thoughts and prayers.  I love all my family - those who are blood relatives and those who chose to be a dear part of my life.  <3

So HAPPY Mother's Day because I was fortunate enough to have had the most amazing daughter to care for here on earth for 22 years and for all eternity.  And HAPPY Mother's Day because I am fortunate enough to still have all 3 of my sons in my life and a sweet daughter-in-law as well.  How could I ever be so lucky?

Grieving is Hard Work

Those who have never buried their child cannot know that pain... it is different than having another family member or loved one die.  I carried my girl in my womb for 9 months and had morning sickness that whole time. I gave birth to my Jessica, cared for her through all her special needs, many complicated medical problems, did therapy (OT, PT and speech), gave up so many of my own needs for hers and fought for every little thing for her for 22 years.  My heart yearns to care for her again.  To brush the hair out of her eyes, touch her cheek and calm her fears.  I spent so many sleepless nights calming her down, helping her see the good in her life and helping ease her physical pain.  So many little things I did for her that nobody even knew about because she was embarrassed that she needed my help with those personal things.  We had a bedtime routine that increased over time to where it took me hours to get her calm, tummy full and pain under control so that she could finally sleep.  I used to pop popcorn EVERY NIGHT and we would eat it together while watching TV in her room.  I can't eat popcorn anymore, especially the regular butter kind that she and I would eat.  There are still popcicles in our freezer that we bought for her last year hoping that she would be able to eat them but no, she couldn't even keep that down.

Most days I'm OK but that might be that I'm trying to ignore the closed bedroom door.  A small piece of me is hoping ... or wishing... that all I would have to do is open it and I would be able to rush in and hold my sweet girl.  I miss her so much... I think my heart will break into a million pieces.  I saw her heart give out.  Her heart fought a long hard battle and survived much longer than anyone ever expected, ... but not long enough.  It would never be long enough.  After she took her last breath and her heart's fluttering stopped we sat there looking ... and watching... are we SURE it was done?  Could it start beating again?  She had cheated death so many times before, why couldn't she do it just one more time?  We saw so many miracles during her lifetime why couldn't we have just one more?  The miracle that came was for her, not for me.  The real miracle is that she is no longer suffering and will never feel pain again!  She suffered for so very long.  I grieve over the pain she went through for so long and how I fought so hard to get someone to listen to me and help me ease her pain.  I couldn't get anyone to understand how incredibly ill she really was.  But I knew.  I knew her whole GI system was shutting down.  I knew her heart could only take so much and I knew her spirit was growing tired.  I knew I needed to cherish every kiss, every hug and every "I love you Mommy".

Eleven months ago I told my precious girl to "Go to the light", that it was time to go to heaven.  It was the hardest thing I've ever had to do.  I had fought for her to LIVE with all my might and strength for 22 years and 4 months... but at 3:27 am on October 4th, 2010, I told her to "Go!  You will be great!  You will be beautiful and happy and free!" just when I wanted to cling to her and cry out, "Don't leave me!!!!"  One quick look, one huge tear, one huge frown and one last breath and she was gone.  She was finally free of the body that held her back in so many ways... that kept her from doing all the normal things that most kids do... kept her from having the biggest dream of all... to get married and have a family just like Mommy and Daddy.

I know her dreams will come true someday.  It's just soooo hard to wait.  Last year she told me so many times how much she wanted to get married and have a family - she didn't want to die yet.  I told her about what life will be like when she is resurrected... she will no longer need her oxygen, no tubing to trip over and no oxygen tanks to take with her... she wouldn't need a wheelchair either, she would be able to run and play with her children and not sit in the wheelchair and watch.  She wouldn't turn blue and get short of breath... she would breathe freely and be able to do ANYTHING that she wanted to do.  Her healthy body would be able to have as many babies as she wanted and she would be able to take care of them herself.  She would have a good husband to love and who would be a good father to her children just like her Daddy.  She would get married and have her family - she would just have to wait a little longer.

Someone said to me yesterday, "You'll see her again in heaven".  Callus.  That doesn't help me NOW.  It could be 40+ years until I see her again... I don't think she (the commentator) would want to wait that long to see her little girl.  Another comment from someone else when I replied, "It's just such a long wait".... "if you think about it in her perspective it's not that long at all."  I didn't even respond to that.  Please.  If you want to comfort me don't brush my anguish aside.  If you can't respond in a caring manner then don't respond at all.  I tried not to let those comments affect me and I went about doing other things.  I don't always feel this bad but I HAVE TO FEEL IT.  I can't just brush it aside as if I never even had a daughter.  I did have a daughter - I STILL have a daughter, I just can't see her or touch her right now.

This weekend was my in-law's 50th anniversary celebration.  Each of their 4 children had a display table for their families to set up, anything we wanted to as a representation of our families.  We had pictures and a digital photo frame.  My sis-in-law recommended that I bring the photo display board that I had set up at Jessica's funeral.  I brought it and quickly added a few photos.  We had it set up next to our little table.  I saw quite a few people looking over the photos - I had her birth date and death dates on there so I'm sure everyone knew she had passed on.  I met some people I didn't know and there were quite a few people asking about my precious angel.  It was such a huge hole not having her there.  What made it worse is that Justen and Ravyn weren't able to make it so 1/2 of my children weren't there.  It was very nice to see the in-laws, some of whom I haven't seen in quite awhile.  A couple of the young nieces remind Karl and I of our little girl - who was a "little girl" her whole life.  We had a lot of emotions that night at the party and I sobbed on the ride home.

Yesterday (technically it was yesterday but I still haven't gone to bed so it's "today" for me - lol) was one of those dates.  It was exactly a year ago that we celebrated my birthday 16 days early so that Jessica wouldn't feel the need to linger on and suffer needlessly in order to be here for my birthday.

She was so thin and weak... I couldn't get behind her to hold her up without causing her too much pain.  It was a very difficult birthday for me... but little did I know that she would not only be here for my actual birthday (September 20) but she survived until Oct 4th, 2010.  Exactly eleven months ago.  

I can't believe that it's been 11 months since I last held my girl.  It seems like AGES and I'm so tired... I can't even begin to think of living my life without my girl for YEARS.  It's such hard work to grieve.  Even when you think you are doing ok, it's still there.  The void.  The yearning to care for your own child is still there.  Wishing to hear her voice again, hear her laugh and see her smile... it's even there when I sleep.  I dreamed that Brandon put one of our kittens outside, shut the door and walked away.  I was frantically looking for the kitten who I just knew was out there, afraid and alone.  I realized that my dream wasn't about the kitten, it was about my subconscious worrying that Jessica is alone and afraid.  She always needed me to be nearby.  If I left to go somewhere she would call me every 5 minutes asking when I would return.  Most of the time I worried about her welfare while I was gone... was she breathing ok?  Was she calm and happy or was she worried and scared?  In my heart I know that she is in a place where the cares of the world are laid to rest.  She is with people who love her and she is happy.  She is able to do anything she wants to do and I believe she is able to visit me whenever she needs to.  But my subconsciousness doesn't know this.  It worries because I can't see her, I can't ask her how she is doing and I can't hug her worries away.  I keep thinking that I held her up and carried her for 22 years... now it's her turn to help me from the other side of the veil.  I've worried about how I would grieve over my daughter's death for so many years... and now it's a reality.  I can't just wake up and go to her room and hold her.  She really is gone this time.   

I'm not sure if anyone will read this or not but I think I needed to write it for my own good.  I thought I knew what grieving would be like but it is different than I expected in some ways.  Each day is a new day... not one that I readily get up and am excited about.  It's like I get up and put on a 100 pound sack on my shoulders.  I don't want it but it's there.  The pain, the sorrow, the loss... it's actually even there when I'm asleep.  I've heard that you become stronger to carry that hole in your heart after you've buried a child but it never goes away.

Earlier in the evening I decided to write down a little of what I was feeling and several hours later (taking several breaks from writing) I think I'm done writing for the night.  Sorry if I rambled on and went on different tangents.  I've had a few people tell me that they wish I would go back to blogging since they hate facebook. I think that the main purpose for me to write is to get it out and also, if anyone should happen to read it, maybe they will become more aware of what a mother feels after losing a child.  Maybe they can avoid some of the pitfalls in the unwelcome remarks and maybe, they will just offer a hug or an ,"I'm so sorry" instead of trying to brush off the grieving mother's feelings.

Good Night blogland.

Butterfly Girl

I found this image online and it made me think of my beautiful girl, Miss Jess, in heaven who can finally dance and fly with the butterflies.  

I had a rough day today, you see, one year ago we found out from the GI doctor that our daughter was indeed in starvation mode... her GI system was shutting down due to her terminal GI illness. We didn't know that we only had 2 months left with our angel on earth. I keep having flashbacks of that day and the months following... so many difficult moments... but precious ones as well. Just wish I could kiss her cheek and hear her telling me how much she loves me one more time.

Of course one more kiss and hug would leave me wanting one more and one more.  At least I took the opportunity to get as many hugs and kisses and "I love you's" as I could while she was still here.  We had many private moments and talks which I cherish.  I hope that the good memories will help me going while dealing with the difficult ones as they come.

Last weekend we celebrated my parent's 50th wedding anniversary.  It was a wonderful event.  I hope to have photos back from my dear friend and photographer soon.  I missed my girl so very much but knew that she would have been way to sick to even attend the event had she still been alive.  I'm sure that she and her cousin, Marcus, were there enjoying the rest of my parent's children, grandchildren and great-grandchildren.  My parents both had siblings who were able to make it to their celebration too and it was so wonderful to see them again.  

My husband reminded me that I shouldn't forget to include my cousin, Martin, who died about 14 yrs ago from a brain tumor when I speak of Jessica and Marcus - and he's right.  I didn't know Martin very well since he was much younger than myself but he touched our lives in a way only he could.  When he was fighting his cancer we drove to the Phoenix area (about 2 1/2 hrs from our home) to visit him and my aunt and uncle to offer them support.  It meant a lot to them that we would go and be there with them.. . and it blessed our lives to be able to offer our love and support to them as well.  Caring for a medically fragile child for so many years has offered Karl and I an opportunity to be so much more compassionate towards anyone dealing with an illness, disability or special needs.  I have found that it's one thing that helps lift my spirits - offering support and love to others who are either caring for a loved one with special needs/medical issues or who are grieving the loss of a loved one.  

I hope to be back soon with photos of our amazing family celebration honoring my parent's 50th anniversary.  I'm so thankful for them and their commitment to the gospel and to each other.