Forty-two minutes...a lifetime of love...

God's Gift...Our Angel Baby

Twenty weeks into life, Hailey was diagnosed with alobar holoprosencephaly (HPE). Further testing showed that she had full Trisomy 13, also called Patau syndrome. Trisomy 13 affects about 1 in 16,000 babies. HPE affects about 1 in 10,000 babies and of those only 3% survive to delivery. With the severity of Hailey's condition, she is given little chance of surviving to term. But our family was dedicated to giving her that chance, no matter how small, and she gave us every hope for the future.

On June 12, 2009, our angel baby was born and delivered into our loving arms. There is where she spent her life and gave us the best 42 minutes of ours. Our journey led us to this moment in time, the moment we met our little girl face to face, and the precious time we shared with her. Now Hailey is safe in the hands of God until we meet again.

God has blessed our family in ways we didn't understand at first. But through our faith and trust in Him, we came to realize just how much purpose Hailey's life serves on this earth. Hailey has unlocked the deeper meaning of faith, hope and love, and has forever changed the lives of many. We are blessed to be part of such an incredible life and incredible journey.

Psalm 139:13-16

For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Tuesday, October 20, 2009

We Live. We Grieve. We Remember.

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." - John 14:27

It's been a little over four months now since Hailey's Day, and I feel like I am where I was then. I still feel the same joy and pain.

I'd like to share a little secret that also happens to be a fear of mine, my fear is that people will forget Hailey. I'm afraid that as time continues to move forward, as it always does, Hailey's memory, her life will become less evident and less talked about, and that scares me. I know I will always remember Hailey because I am blessed to be her mother, and while I carry a part of her she too carries a part of me...the piece of my heart that she took home with her. But I'm still living four months ago because it was then that I spent my life with my daughter, it was then and only then...and now, well every one else is in the now living on and moving on. That is where a very common and very wrong misconception starts weaving itself into the minds of some people, who we run across from time to time, and who simply don't understand...grief, and more specifically a parent's grief over the loss of their child.


As I write this, my purpose is to educate people of something they might not understand. I also write this from an 'us' perspective, and when I refer to 'us' I'm referring to parents who are dealing with the tragic death of their child. The pain is indescribable. You can't relate to it unless you have experienced it for yourself...and please don't try. There is nothing...nothing to convey what it feels like to lay your child down in a small, white polished box and look at her face for what you know will be the very last time - the last image you are left to live with.

"I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth." - Psalm 121:1-2

** Don't be afraid of us. Don't turn away and avoid us. If the situation makes you uncomfortable, imagine how uncomfortable it is in our shoes - to live a life without holding your child. It is okay to talk to us, hug us and show us you care. Here is one of the best things I've heard someone say to a mother hurting:

"I'm not going to try and tell you things I know nothing about...just that we all love you and you are in our thoughts and prayers."

** If you don't know what to say, don't say anything at all. Trust me, we understand. What is the right thing to say? I honestly don't have the answer, but sometimes not knowing what to say and speaking anyway might make you wish you hadn't. I remember a couple who came up to Tim and I during Hailey's visitation and they didn't say a word. They looked at us with deep, caring eyes, shook our hands and left. And let me tell you they said just what we needed to know by showing us they cared.

"A knowing look and a long hug is perfect 100% of the time." - Leah's mommy

** Say their name. It's okay! Their picture is constantly in our head, and their name is always at the tip of our tongue. Talking about our babies is what parents do, and it's no different for us. Saying their name keeps their memory alive and flourishing. Knowing that others have not forgotten the person we love most in this world gives us a sense of pride and joy that our children live on in the minds and hearts of others.

** We grieve the way we grieve. There is NO one right way to do it! Not every mother grieves the same, not every father grieves the same, and not every couple grieves the same. If we need to cry every night before bed, every birthday, holiday or every day in between for the next three years, then that's okay. If we want to be proactive and work, then that's okay too. The best thing anyone can do is respect and understand that everyone grieves differently.

You have to learn how to get through a loss - not skip over it or crawl under it.

** Don't pretend to know how you would grieve the loss of a child. My initial thought was that I would fall apart. Basically crawl under a rock and be done with it all. But the experience is so very different, on many levels, from anything you could possible think in your mind. We would never, ever wish for anyone to experience even a slice of the pain we feel, but unless you lived it you won't know how you will, in reality, 'deal' with it. So please don't expect people to grieve the way you would expect yourself to grieve - you just don't know.

** There is NO time limit to grieve. You will always remember your child, and you will always miss the joy and love you experienced when, for a little while, you carried them inside or held them in your arms. I'm sure it's true, and I'm hoping that it's true, that time helps dull the pain - but the scare is still there.

FYI...three days bereavement leave doesn't cover it - not by a long shot.

** Grandparents grieve too, and they grieve twice. I imagine they suffer an intense pain to lose a grandchild they very much love, and on top of that they experience the pain of watching their child suffer and endure the greatest pain you know they could ever experience - and there's nothing they can do about it. Just know that their hearts hurt too, and they need love and support just as we do.

** We want to be with our child. What parent would want to be anywhere else? And for us, we will be with them again one day, and what a happy day that will be, but don't assume that our longing to be with our child means we are on the edge to make that happen (unless you know someone who is displaying life threatening thoughts or behavior; in which case they may be calling out for help). I miss Hailey so much, and I would love nothing more than to see her and hold her again, but like I tell Ryan - it's not our turn to go to heaven yet, but when it is we will be with her again.

Earlier this week Ryan asked me if an airplane can take us to heaven to see Hailey. I told him that when it's time for us to go to heaven Jesus will come and get us.

** It doesn't matter how long your child lived - because the amount of time we have with our children doesn't add to or lessen the amount of pain that comes with loosing your child. This is probably the most skewed perception a person might have, but I think that I can speak for the majority of us when I say that it doesn't matter if our child lived ten years or 42 minutes. It doesn't matter if our child lived for 13 weeks with her mother (miscarriage). It doesn't matter if our child was born at peace (stillbirth). They matter to us because they are our children, no matter how long we were blessed to hold them on this earth! And our hearts break all the same. It breaks for what you lost in the past and what you lost for the future.

"Blessed are those who mourn, for they will be comforted." - Matthew 5:4

"He heals the brokenhearted and binds up their wounds." -Psalm 147:3

If you could get an inside look into our minds, and touch the pain that's in our hearts, maybe then would you come close to understanding what this road of healing is really like. If we had it our way, I guarantee you that things would be very different right now. Our hearts are broken and we need time to mend. We'll never be 100%, but we start finding things to make us smile again. That may take some time, we don't know how much exactly, but eventually we'll get there.

Thank you to the mommies of Ava, Sophie and Chloe for grieving with me and sharing the life lived in the moments we cherish with our daughters.

We live. We grieve. We remember!

I want to pass along the lyrics to a song called "When Joy and Sorrow Meet" by Avalon, which was shared by Jonathan's mommy:

There's a place of quite stillness
'tween the light and shadows reach
Where the hurting and the hopeless seek everlasting peace
Words of men and songs of angels whisper comfort bittersweet
Mending grief and life eternal where joy and sorrow meet
There is a place where hope remains
In crowns of thorns and crimson stains
And tears that fall on Jesus' feet
Where joy and sorrow meet
There's a place the lost surrender and the weary will retreat
Full of grace and mercy tender in time of unbelief
For the wounded there is healing, strength is given to the weak
Broken hearts find love redeeming where joy and sorrow meet
There's a place of thirst and hunger where the roots of faith grow deep
And there is rain and rolling thunder when the road is rough and steep
There is hope in desperation there is victory in defeat
At the cross of restoration where joy and sorrow meet

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." - Philippians 4:6-7
But Jesus said, "Let the little ones come to me, and do not keep them away; for such is the kingdom of heaven." - Matthew 19:14