Wednesday, March 28, 2012

My New 'Normal'

I frequent a dead baby forum for grieving parents. It has been a refuge and a lifeline for me these past many months. Many of you baby loss mamas (and papas) reading my blog know of what I am writing. Those of you who read this and haven't lost children, consider yourselves blessed beyond words to not need to know about a site like the one I am describing. However, if you're a mama reading my blog and you are missing your baby like only a mama can miss the child she buried and you don't have an online refuge like this send me a message and I'll email you the address privately.

 No matter how I can laugh with you there is always a part of me that is grieving. You will never have my full attention again. I don't know if this will ever go away and if I will ever be completely joyful again. I don't think so. Despite the fact that I do believe that the joy of the Lord is my strength. In fact I am joyful in the Lord.  He is my strength, even with the tears that fall every day. I do have glimmers of joy in my day, in my life. I rejoice in so much but, no matter what, there is always that little sad spot that misses Eva (okay, big sad spot that misses Eva). I'm not going to get into how much I miss've all read it before. It hasn't changed. I still miss her. With every breath. With every heartbeat.

Back to the dead baby forum. One of the mamas there posted the note below. It spoke to me in many, many ways.

My New 'Normal'

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family’s life.
Normal is reliving that day continuously through your eyes and mind.
Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart.
Normal is staring at every baby who looks like she is my baby’s age. And then thinking of the age she would be now and not being able to imagine it. Then wondering why it is even important to imagine it, because it will never happen.
Normal is telling the story of your child’s death as if it were an everyday, commonplace activity, and then seeing the horror in someone’s eyes at how awful it sounds. And yet realizing it has become a part of my “normal”.
Normal is each year coming up with the difficult task of how to honor your child’s memory and her birthday and survive these days.
Normal is my heart warming and yet sinking at the sight of something special that my daughter would have loved, but how she is not here to enjoy it.
Normal is having some people afraid to mention my child.
Normal is making sure that others remember her.
Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.
Normal is weeks, months, and years after the initial shock, the grieving gets worse sometimes, not better.
Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you – it doesn’t compare. Losing a parent is horrible, but having to bury your own child is unbelievable.
Normal is trying not to cry all day, because I know my mental health depends on it.
Normal is realizing I do cry everyday.
Normal is being impatient with everything and everyone, but someone stricken with grief over the loss of  their child.
Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.
Normal is wondering this time whether you are going to say you have four children or three, because you will never see this person again and it is not worth explaining that my baby is in heaven. And yet when you say you have three children to avoid that problem, you feel horrible as if you have betrayed your baby.
Normal is knowing I will never get over this loss, in a day or a million years.
(I want to add here that I know one day I will get over this loss. The day I die. The day I go to heaven and behold my beautiful Eva again.)
And last of all, Normal is hiding all the things that have become “normal” for you to feel, so that everyone around you will think that you are “normal”.
-Author Unknown   

Tell me...what is 'Normal' for you?

Tuesday, March 20, 2012

A little bit...

Softly the leaves of memory fall
Gently I gather and treasure them all.
Unseen, unheard, you are always near.
So missed, so loved, so very dear.
No longer in our lives to share.
But in our hearts you're always there.

I talk about me after Eva all the time. I just wanted to share a little bit of the life of the little girl we miss so much.

Here is the video we played at her funeral. Listen to the lyrics when you watch the video, they mean alot to us.

Eva was one of the happiest, sparkliest little babies you ever met. She was and will always be our little princess.

Friday, March 16, 2012

Bereaved parents wishlist...

I didn't write this post so I can't take the credit. If you do know who wrote it please let me know. I changed he to she to make it more personal for me and not everything is my wishlist but the bulk of it is very accurate for very many and I didn't want to change it. I am safe to say though that #1 on the list is #1 on every single bereaved parents wish list.

Bereaved Parents Wish List
1. I wish my child hadn't died. I wish I had her back.

2. I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that she was important to you also.

3. If I cry and get emotional when you talk about my child I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

4. I wish you wouldn't "kill" my child again by removing her pictures, artwork, or other remembrances from your home.

5. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

6. I need diversions, so I do want to hear about you; but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

7. I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know those things through a phone call, a card or note, or a real big hug.

8. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

9. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that she is dead.

10. I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so don't frustrate yourself.

11. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal.

12. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.

13. When I say "I'm doing okay," I wish you could understand that I don't "feel" okay and that I struggle daily.

14. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.

15. Your advice to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

16. Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

17. I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.

18. I wish very much that you could understand; understand my loss and my grief, my silence and my tears, my void and my pain. BUT I pray daily that you will never understand.         

Wednesday, March 14, 2012

My treasure, my sweet...

My dearest Eva, my treasure, my sweet,

It's coming on the 15th again. The anniversary of your birth and your death all rolled into one for this sad mama. How I miss you my darling. You are ever-present in my heart and mind. I may appear to be engaged with others but you are always there with me, dancing in my peripheral vision. What would you be doing if you were here? It is the question I ask myself every day...the question without an answer.

On Friday I was shopping and I bought a little something for all the kids...I had to buy you something too. I bought you blue butterfly hairbows. They would have looked so amazing with your beautiful blue eyes. Of course, you can't wear them, and nothing can bring them to you. But they are yours. I just had to buy you something. Had to carry that little bitty card with the hair bows home wishing all the while that you were here and I could put them in your hair.

Some may think my mind is cracking, but the truth is much worse than that. The truth is that it is my heart that is not only cracked, but completely broken open. One can live with a cracked mind but what I don't understand is how I have managed and continue to manage to live with this broken heart.  Every evening I am surprised I have lived through another day without you. Every day I miss you but as the 15th draws closer, so do you, and I miss you even more. The 15th is for you. Always.  How I wish you could have stayed longer with us. How I wish I never knew this depth of pain and you were here in my arms...or trying to squirm away and go play. How I wish the 15th was only a happy day. A day where you were another month older. A day that could go by, scarcely noticed until it was your birthday again.

Eva darling, your mama misses you so. Every night I pray to dream of you and I never do. Maybe it would be too painful to wake up without you but what I wouldn't do to hold you in my arms again, even if only in my dreams.

I love you my sweet. Good night my darling, my love.
Your mama.

Saturday, March 10, 2012

I confess...

I confess that it is so much harder to walk the walk than it is to talk the talk.
I confess that I wailed and howled for Eva in the shower tonight.
I confess that it still hurts like she died yesterday, and no, I'm not over it.
I confess that it feels like I have almost no friends left.
I confess that I am no longer a friend either.
I confess that my heart is broken open, that my tears flow freely, and I am overwhelmed with grief.
I confess that I am envious of other people's children.
I confess that I am mad when people tell me how to feel, especially if they don't even bother to read this blog.

Wednesday, March 7, 2012

Miracles Still Happen?

Do miracles still happen?

So many people talk about babies that make it as fighters, oh, and if you pray hard enough, with enough faith, then your child will live. And let`s not forget positive thinking. You know, if you fight, pray, and know without a doubt you will have a positive outcome then, of course, you will.

We came home with Eva for 11 glorious days before she died. We had no clue she would die on August 15th. We just lived, loved and took way too few pictures. If I had known that these would be the last days with our girl I would have video recorded every moment.

I made thank you cards for all the people who had supported us so much during her hospitalization.  The card had 6 pictures of Eva on it and in the middle...

Miracles Still Happen. Many thanks for being part of our journey. Love from Eva and family.

We had about 100 made. I have over 50 of them still sitting in the box from costco. They taunt me and mock me sitting there on the shelf with no one to give them to...I feel so dumb to have made those cards, so dumb to think we had our miracle.  I never had time to give them all out...instead I ended up writing an obituary and making bookmarks out of them...we have plenty of time to make sure everyone has one of those.

We thought we had our miracle. When we were first admitted to the Stollery she had a 1/3 chance of surviving. Her odds increased as she didn't need ECMO. Her odds increased as the rhythm was taken under control. Her odds increased as she was discharged from PICU. Her odds increased as she was allowed off the floor (but stay in the hospital), her odds increased as she was allowed to Ronald McDonald House in the city (but don`t go home), her odds were at an all-time high when we were sent home (5 hours from the hospital).  She would only need to come in for check-ups now. Nobody could believe this laughing, healthy-looking child came with the very thick chart!

On August 15th, a beautiful summer day I will never forget, we drove into the city for her first check-up with the pediatric cardiologist. The check-up was for Tuesday the 16th. We never made it. Scars from her heart surgery ruptured and her heart stopped at 8:30 that night, in her daddy's hands. Medical teams were unable to resuscitate her and she was declared dead in the ER at 9:15pm. She never even made it back to the PICU. My heart breaks with missing her...

There were thousands, literally thousands, of people praying for Eva. People were praying across 2 continents. Great prayer warriors with more faith than my meager share. There were prayer vigils in churches around the clock. Oh, and she was a fighter too...she didn`t go into cardiac arrest in PICU, not even under anesthesia when they had the whole ECMO team on stand-by as they did the cardiac catheterization. She had the highest doses of multiple toxic drugs and tolerated them better than many adults. She had no food for over a week, and was tiny to start with. She lost 2 pounds in the PICU. If you think that`s not much, she was only 14 pounds to start with. Now, on to positive thinking. We had made cards saying she `made it`. Many thanks for being part of our journey.  On the morning of the day she died, I don`t think you could find a family anywhere who thought more positively than we did. We had made it! We still had our little girl!

So, next time you talk to someone about their kids making it through something because they were fighters, or they had enough faith, or they had positive thoughts, remember Eva. Eva wasn`t any less of a fighter, our faith isn`t worthless because God had other plans than the road we wanted, and positive thoughts...well...I think I`ve summed it up.

Remember Georgina, who was born at 23 weeks and lived for 3 days...she tried to take 3 breaths on her own. Remember Molly, who fought for 3 hours. Remember Mira, who lived and died in her mother's arms. Remember Auggie, who fought so hard to get out of NICU but died suddenly at 5 months old...joining his sister, Bea, in heaven. Remember Gabriel, whose lungs were not developed enough to breathe outside the womb, and suffocated in his mother's arms after fighting valiantly for half an hour. Remember Wyatt, who was only supposed to live 10 months but survived for 3 years. Remember Marlo, who had a heart defect but lived for 4 days without medical intervention. Remember Nathaniel, who had a chromosonal defect, incompatible with life, but still lived for half an hour and died in his mother's arms. Remember Frazier who was born with a heart defect, was on the transplant list but had a stroke at 2 weeks old. Remember Nathan who was so strong he showed no effects of being sick until, at 6 years old, he collapsed at church, and died 72 hours later. Remember Thomas, who valiantly fought cancer for years, finally to be declared cancer-free, and died less than 6 months later. Remember Faith, who survived for 2 months in utero with no amniotic fluid. Remember Nolan, who fought cancer for months and finally died on his terms. Remember Kelly, who had a chromosomal defect but defied all odds and lived for 9 weeks. Remember Ariadne, who was born too early and too sick because her mom had appendicitis, she fought for almost a month in NICU before she died.  Remember  Bryce, who had every chemo side-effect under the sun for months before ascending to heaven.  Remember Grace. Remember Joseph. Remember Danny. Remember Eden. Remember Emily. Remember Jonah. Remember Freddie. Remember Casey. Remember Charlotte. Remember Ellis. Remember Ryder-Lee, Remember Kaleb. Remember Simone. Remember.

So, while, I still do believe that miracles still happen...and I saw one yesterday in our bathroom...and I saw 3 little boy ones running through the house today. I also know that sometimes God has a different plan than the one I wanted more than anything on the little Eva, my little Breath of Life.

Our prayer has always been and continues to be that Eva`s sick heart would bring many hearts to True Life. Maybe that`s her legacy...her breath of life...her miracle. Miracles still happen. Yes, maybe even to us.

Thursday, March 1, 2012

In my heart are many rooms...

Shortly after losing Eva I read a book, among many. But, Somewhere More Holy by Tony Woodlief gave me some new language. Some of this language comes out now when my sons ask who I love best.  Now I tell them that in my heart are many rooms and each one of them has their very own room.  Eva also has a it an empty room now? No,  it is not empty. It is full. Full of love for the little princess I could only lavish love on for 10 short months.

I have 3 sons on earth who bless me daily. I have 1 daughter in heaven and am constantly amazed how many people have been touched through her brief life...but there is one more. One more child I have been keeping a secret from you. A child who is a significant part of our lives. A little girl. A little girl 8 months older than Eva would have been. A little girl who loves girly things, shoes, strollers, kisses, hugs, and 'pretties' in her hair.  My heart is torn with this little girl . I want to lavish love on her but my heart is often heavy.  When she does cute things I imagine my little Eva doing those things very soon...and it hurts. I want to admire Eva as she makes new discoveries and toddles around her world and my heart. What is she doing in heaven right now? Is she toddling around? Does an angel tuck her in for naps? 

 And butterflies. Butterflies are for Eva...when this other little girl has butterflies on her clothes (as girls often do)...I see my little Eva there...and somehow she is with us (it's amazing the straws we grasp at, really). My heart yearns for Eva, but this other girl, this little blond pumpkin, is building herself a room in my heart. 

This post isn't much today but it's been in my heart...