Love.

I was watching Young and the Restless today while Evie was napping as I just love soap operas so much and it is a nice break from reality sometimes. One of the characters was giving advice to another about infant loss. The woman had recently lost her infant son after years of infertility. Of course this is a soap opera so the baby is actually alive and has been kidnapped but thats not the point. The point is the advice she gave rang true for me. 

She said, "There is a hole in your heart, you need love to heal that." And it just felt so right to hear that. Even after all this time we still just need love. 

Dealing with a death of a child is impossible. Just unfathomable to those who have not experienced it first hand. Love really is the only thing that can help. Not judgement, not forgetting, not silence, not avoidance, not misunderstanding. Just love. 

If you start out with that in mind when trying to help someone, you will always be an asset for the people dealing with grief. Always. The holidays are hard, grief is a life long process, but the love we get from friends and family is what means everything and helps us to remember Lila. 

Thanksgiving Weekend

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A “rainbow baby” is a baby that is born following a miscarriage, stillbirth, neonatal death or infant loss.In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison. (www.countthekicks.org.uk)

Eve is our rainbow baby and this past weekend she really showed us what that must mean for her, in her toddler way, to have an older sister who is not here. She has been saying Lila's name, it sounds like "Wiwa" and she seems to recognize her in pictures. We went to the mausoleum and she leaned up to give Lila some flowers. It was heartbreaking and amazing and devastating all in one move. I lost it this day at the mausoleum watching my amazing daughter interact with her sister the only way she can. Right now she doesn't know anything but happiness when she talks about Lila and I wish that it would always be that way for her but I know someday it will turn to sadness as well. It is unfair and unbelievable that this is the reality for my two girls, how I wish they could have known each other and be the best of friends. 

Mike and I both found Thanksgiving to be very difficult this year. We had a lot of good times, the holiday itself went really well and we had a lot of fun at a friend's house. We ran the turkey trot downtown and even Evie joined in via her stroller. The days surrounding it though were filled with a lot of despair and just feeling sad. Three Thanksgivings without Lila and it is still hard, it still hurts and it still makes us question everything. The holiday is supposed to be about giving thanks, but when you lose a baby, it is sometimes hard to do this when some people in today's society give thanks for material items and all you want is to have all your children alive and healthy. I give thanks every second for my younger daughter but then I question why couldn't I have both of my kids? It is confusing and hard and just another layer of grief to deal with around the holidays. The positive moments from the past four days were good, but I am just glad Thanksgiving is over with. 

 

    Articles that get it

    Sometimes I read articles that just seem to say everything that I want to say and I wish I had the ability to write like some of these other loss parents can. This article is very spot on for both Mike and I and sums up so very well how we feel. The author writes in such a way that I can identify with all 6 of her points. I italicized the parts where I wrote my thoughts on each one. 

     

    Six Things I Wish People Knew About Grieving the Loss of a Child

    OCTOBER 26, 2015 BY MALKA AHMED

    Grieving the loss of a child is a grief that is unique. It is a loss that is still largely considered taboo, and when someone experiences the tragic loss of losing a child, there are very few societal norms that can guide family and friends when their loved one finds themselves in the path of an unfathomable loss. I lost my daughter a year and half ago, and I still consider my grief to be very new. But it surprises me every time I meet up with a friend or see family, and their reactions to my pain. Here, I’ve compiled the six things I wish people understood about grieving the loss of a child:

     

    One: Grief and Love are the same.
    Please don’t think that because I am still grieving for my child even after all this time that there is something wrong me, or that I need to get over it. I grieve deeply for the loss of my child because I also love her deeply. Love never dies, therefore neither will grief.

    Yes! This is so so so true. I still need time, I will need time forever. 

    Two: I will never get over it.
    I may look like I finally got my life back together, I may have even gone on to have more children or embarked on a new career, but my child and the trauma of losing her is always one step behind. My tears may have dried, and I can probably utter my child’s name without breaking apart, but please know that I will never, ever get over the fact that she is gone.

    No matter what I am always longing for Lila, I have very happy times, but she is always missed. 

    Three: Silence is deafening.
    I know it must be very difficult and confusing to know what to say to someone who has lost a child. I know how uncomfortable and unfathomable it must be to you, but please know that wrongly worded sentiments are easier to forgive than your silence. My world has forever been shattered, a simple “I’m sorry” will do.

    Mike and I can still tell you the people we did not hear from after losing Lila. I barely can recall anyone that said the "wrong" thing. Saying or doing nothing was always the most hurtful. Send a card if you do not know what to do and write something in it about how sorry you are. Always do something. 

    Four: My child is irreplaceable.
    It doesn’t matter when my loss may have occurred, whether it was an early miscarriage, or if I had the chance to spend a few moments with my child before she died. Babies are not interchangeable and any subsequent child born after is not replacement.

    Lila was so unique and we knew that from the time she first kicked me right as Mike's head was on my stomach. We wish Lila would have had the chance to show the rest of the world the amazing girl she was. We could have ten more children and none of them will ever be our Lila. Her sister is already proving that as they do not look that much alike and we can tell how different their personalities are. 

    Five: I’ll always live in a parallel universe.
    No matter how much time has gone by,  when an important holiday or occasion occurs, my mind is going to retreat into another universe where my child would have been present. I will calculate how old they would be and how they would look. This whole entire universe is something I hold on my own, so if you find me retreating inward during a significant day, please know that I am in that place that I share uniquely with my child and my imagination. It’s just how things are always going to be.

    So many times Mike and I have said "if Lila was here" we would do so and so this way. We talk about it almost daily. We should have had two girls who would have been 16 months apart and we long for that life every single second. Coming to terms with the fact that we will never live that life is a long and difficult process. 

    Six: I am forever changed.
    The day my child died is the same day a big part of me died too. I won’t go back to being my usual innocent and carefree self again. It will take time for me to find myself, and return back home. But when I’ve figured out a way to put together all the broken pieces, I won’t look the same. Please understand that.

    I am not the same person. This could be a blog post in its own. 

    Powerful Lila Stone Picture

    The past few years we have spent the second weekend in October with friends of ours who also lost a baby, Ethan, shortly after Lila and now have a daughter 20 days younger than Evie.  They live in Toronto and that weekend is their Canadian Thanksgiving. It has become something of a tradition for us all to meet up that weekend.  Since last weekend was also our five year anniversary, we decided to make the trip there this year.

    On the way to Toronto, we decided to take Evie for her first visit to Niagara Falls.  She had a great time but I think she was more excited by the puddles created by the mist and the pigeons than the power and beauty of the falls.  It was a good stop and we spent some time walking around, taking pictures and enjoying the great views.  I spent a little time taking some Lila stone pictures.  I got a few good ones but check out the one below...

    Since it was so sunny there, I couldn't tell how good this was until later on that day.  This is such a beautiful and powerful picture of the falls, the Lila stone and a rainbow in between them.  It makes me think of how beautiful Lila is and how powerfully she has impacted our lives.  Not a day goes by that we don't talk about Lila or say how much we miss her.  

    Another aspect of the power of this picture is that this Lila stone is with me every day.  It is the one that I held up while honoring her at her memorial.  I almost lost it on a sidewalk in DC and in a couch at a friends house.  It falls out of my pocket at work and in the car on occasion but I always seem to find it.  It is worn a bit since I tend to rub it a lot.  If I ever loose my Lila stone or break it, I'll probably go mad.  It is a little piece of Lila that I can take with me wherever I go. - Mike

    The Prayer Flag Project

    On the Carly Marie Project Heal website (http://carlymarieprojectheal.com) I read about the Prayer Flag Project that is on today August 19th. You are to make a flag in honor of your child who has died and use the time to reflect on your grief and heal. I told Mike that we should do this as I like to do anything I can to honor and remember Lila. I thought about going to the craft store and buying all sorts of things to make a elaborate and huge flag and then I would buy a flag pole and hang it out front for everyone to see. I kept thinking I would do all of this but as the day got closer and closer I just never brought myself to do it. I have found August to be an incredibly difficult and sad month for many reasons and I just felt that doing this project might just make me more upset.

    Today though I woke up early and since Evie was still sleeping I felt like I wanted to do something for Lila. I found a pink and white blanket I had bought for her shortly after we found out she was a girl and I thought it was so perfect for this project. Plus the blanket is very special to me as she did get to use it a few times and I always thought it was so pretty. I realized that for me I wanted to put Lila's things on the blanket to represent our prayer flag. Any chance I can get to go through Lila's things is helpful for me as sad as it is as well. I started to gravitate toward the items that had her name on it. I think that is one of the reasons I have been having a hard time lately, I do not see Lila's name enough, hear it enough, or have a reason to say it enough. Her name is everything to me and there were so many hopes and dreams for her with that name. I did find that making this little blanket flag was peaceful and calming and even though it was not as elaborate as one I had imagined making earlier, it feels right. I hung it out in the backyard so that I could see it more during the day and I love how the wind slowly blows it on our porch. If the weather was as nice as it is today all the time maybe I would hang out a flag for Lila year round.