Posted by on Apr 13, 2017 in Life After Phoenix, Update | No Comments

Earlier this week, I was playing outside with Little Brother and saw the crate of sidewalk chalk and bubbles that has been collecting cobwebs in the corner of our porch. I pulled it out and dusted off a bottle of bubbles and immediately thought of this post I wrote back in my early days of grief. I still have some of those same feelings. They are not as intense as they were then, but they are still there. Adjusting to my new normal is easier than other times. It’s harder when something big happens – like the birth of Little Sister or a holiday. It always feel off. Broken. Not complete. As the date of her passing speeds closer and closer  I am becoming more and more wearisome. I am tired of life without Phoenix. I am tired of seeing one less seat at the dinner table. I am tired of not trying to get one more little one to bed at a decent hour. I am just tired.

I still, occasionally, go to Compassionate Friends meetings and actually find more comfort in them now than I used to. I still get jealous of the parents who had their children for years versus our mere months. But, I have come to a place of understanding that while we don’t share the same pain, we do share the knowledge of this pain when no other can. People often tell me I am strong. They wouldn’t be able to do what I have gone through. Well sorry to tell you that yes you could do it (it’s not like you would have a choice). And as far as being strong…again I really don’t have a choice do I? There is Little Brother and Little Sister to think of. Honestly, I take it day by day. It used to be moment by moment. The journey of grief changes. I have periods of time I can catch my breath and others that I feel like all is lost.  Here is one of the best explanations I have heard:

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

We are coming up on the third anniversary of Phoenix’s death. Three long, but sometimes short, years. In October she would of been 5! It is difficult to wrap my mind around that. I should have a 4.5 year old running around here too. I should be dealing with the struggles that came with Apert Syndrome. But those aren’t happening and my life is less because of it.

There isn’t a day that goes by that I don’t think of her and what life was like and how it would of been.  People will say to me that she no longer has Apert Syndrome or she is healed! or at least she no longer has to suffer with fill in the blank (read – whatever garbage they spew out). To that I say, how do you know what Heaven is like? You don’t know if she has Apert Syndrome or healed or whatever there. You don’t know how selfish a beavered mother can be – I would take her back, even knowing all the surgeries and struggles she would have to endure. Do you know what else? I never got to hear her say ‘I love you!’ I never got to take her to girly movies. I never got to dress her up in twirly dresses. I never got to hear her say ‘I hate you!’  I never got to teach her how to do make up and style her hair. I never got to take her prom dress shopping. There is so much loss when it comes to loosing a child. So whatever line you think makes me feel better (lets be honest those lines make you feel better) keep them to yourself.

Luke and I watched Arrival last night. Without giving too much away, part of the plot deals with child loss and the question of if you knew your child would die would you still have them. And the answer, for us and most parents I have talked to, is yes. I still would have had Phoenix even knowing that I would only have 19 short months with her. I wish I had made more moments count and been more joyful about them. If I could give any advice to parents it is that. Enjoy the moments, even when it is hard (believe me it is hard and I don’t always follow this advice). Because, if going to Compassionate Friends has taught me one thing, it is it doesn’t matter if you had your child 19 months or 50 years –  it is always too short.


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