Missing her… in a different way…

I feel like I haven’t really written about Hailey in a long time. I mean, I write about things that have to do with her, but they’re really not about her. In fact, I’ve found myself frustrated with this occurrence in my life lately. I think about things having to do with Hailey – like this blog, starting Hailey’s Hope, I look at her picture and I think Hailey, I look at her footprint on my necklace and I think Hailey – but all the while I am not really thinking about her.

Does that make sense?

It was is really frustrating that I’m doing that. I hate to say this, and hate to admit this, but it’s getting hard to really think about her and really truly remember her… not hard in that I can’t deal with the sadness or deal with it emotionally so I don’t do it…but hard in that it no longer comes as naturally, but instead takes more of a conscious effort now.

I’ve realized that I can think about Hailey all day long…and miss her completely.

Hailey’s 3 Month Birthday, This Little Light of Mine

Hailey would have turned 3 months old today. I can hardly believe it. Time really has been flying by.

One month ago, when I wrote a post on her 2 month birthday I was really struggling with my grief. I wrote about how I didn’t feel like celebrating and I felt more sorrow than joy that day. Well I’m happy to say that I feel like I’m able to celebrate her and find more joy than sorrow today on what would have been her 3 month birthday.

When Hailey was with us, we knew we wouldn’t be able to celebrate any ‘year’ birthdays with her. She would have no first birthday party. She would have no sweet sixteen. And so on. We also knew that we might not even be able to celebrate any ‘month’ birthdays with her. So we decided to celebrate her ‘week’ birthdays.

Thankfully, God blessed us with 5 (‘week’) birthdays that we got to celebrate with her, and we were even able to celebrate her 1 month birthday. I am truly thankful and feel very blessed that we had those opportunities to celebrate her birthdays.

I remember listening in on a phone conversation Josh was having with a friend while Hailey was with us. I heard him talk about how we were celebrating Hailey’s birthdays with some sort of Birthday cake and how we’d sing her “Happy Birthday,” etc. And he said to his friend that we did those things more for me (and us) than for Hailey.

Hailey’s Purpose

To my readers: Finally, I’m taking time to write the post I’ve been longing to write. I hope that as many people read this post as possible – so please share with others if you feel led to. This is a long one. I tried to make it short, but I honestly could probably write an entire book about this post, and I know this post will still not do Hailey’s story justice, but it’s a start. So please take the time to read the entire thing if you can. Oh and you may be wondering why I’m writing in pink – I want to make sure this post stands out. 🙂

On December 4, 2009, when Hailey was three days old, in a NICU at the Children’s Hospital in Birmingham, AL, doctors told us that Hailey had full Trisomy 18, a lethal genetic disorder. On that day, our worst fear was realized, our baby was going to die.

QUESTIONS

There were so many questions I had and that others had and have in these situations. Why did our baby have to be sick? Why did she have to die? Why did this happen to her, a fragile little baby? Why did this happen to us, young, healthy, good people? Why did we have to lose our first child? Why do we have to experience this painful loss as young parents? What does this all mean? What good is there in this terrible situation? Where is God in this?

GOD SPEAKS

I prayed and prayed. I talked to God, a lot. I asked Him so many questions – many of those mentioned above. On December 29, 2009, when Hailey was 4 weeks old, I attempted to soak away my troubles and stress in a hot bath. There, alone in the tub, I broke down into heavy weeping and started a conversation with God that I wrote down in my journal and will never forget for the rest of my life. God will speak to us if we listen. And that night He spoke to me with clarity that I had never experienced before.

“this is not how it should be”

Today was a bittersweet day in some respects. My husband and I spent the evening with my family -my mom, brother, sister-in-law, and nephew. We barely get to spend time with them since we live in Alabama so it’s really a treat for me when we can all get together. I also love seeing my nephew who is getting so big! He’s a year and a couple of months now so every time I see him he’s grown bigger and has learned how to do more things. For instance, the last time I saw him he was a wobbly walker, but now he’s running all over the place. It’s incredible!

Being around babies and young children are hard for me right now, so I knew that tonight could be difficult. I had a great time while we were there, but in the car on the way back to Josh’s parent’s house tears suddenly welled up in my eyes. It was like they had been hiding and couldn’t wait any longer to come out. It kind of took Josh back when he heard me quietly crying as we drove – he didn’t know what was wrong because minutes earlier I had been smiling and laughing.

I was able to run from my true feelings the entire time we were with my family, but I couldn’t outrun them any more. The hole in my heart felt enormous. I missed my daughter. My heart ached…and the tears poured out.

All I could think was that Hailey should have been there. Hailey should have been with us. Hailey should have been able to meet her cousin. I should have been taking care of Hailey like my sister-in-law and brother were taking care of their son. Hailey should have been there…

And that’s when I get back to the issue that bothers me which is how I’m afraid of the moments where it’s like she never existed. She wasn’t there. It’s like she was never even born…

We had Hailey buried in IL because that’s where we call home even though we live in AL and that’s where all of our family lives. I hate that when we brought Hailey “home” we brought her home to IL in a casket…not a carseat…and I can’t even write this right now without crying. She never got to come home to Josh’s parent’s home or my mom’s house. She never was held by one of her aunts and many other relatives and friends. The first time they met her was when she was in her casket at the funeral chapel. And it absolutely breaks my heart.

I keep thinking this isn’t how it’s supposed to be. We weren’t supposed to come home to bury our daughter. We were supposed to come to IL to celebrate Christmas with our newborn daughter and our families….it wasn’t supposed to be this way.

So tonight… the hole in my heart feels incredibly large…and words can’t express how badly I miss Hailey…

But I know…that this is how it’s supposed to be – even if I don’t like it…and I’ll end with these lyrics by Steven Curtis Chapman:

“This is not how it should be
This is not how it could be
But this is how it is
And our God is in control”

…oh and one more thing I want to add… one of my friends (you know who you are) told me yesterday how she admired me for my faith and trust in God and how she can’t imagine what this is like and how I do it… and I told her this: It’s like my life is the footprints in sand poem – I literally feel like I have collapsed and God has picked me up and is carrying me each and every day. The only way I’m getting through any day, hour, or minute, is not me – God is literally carrying me and I have no other choice than to turn to Him and let Him carry me – I wouldn’t survive otherwise.

So tonight will probably be a tough night with many tears involved, but God starts to fill the huge gaping hole in my heart when I talk to him at night… and I’ll let the world in on a little part of the conversation I have with Him. First, I imagine Hailey doing incredible things in Heaven in her perfect healthy body – having so much fun doing things I can’t even imagine. I imagine Hailey happy and in complete peace with her Heavenly Father. Then I say to Jesus, “Give her a hug from me, hold her tightly in Your arms for me, and cover her in kisses from her mommy”…I love you my little munchkin…

Not to us, but to Your Name… (Facebook Note)

While Hailey’s memorial service was beautiful, there is one thing that has been bugging me about it – and just one thing I want to make clear with all of the comments we keep getting from people…

Many people have told us how impressed they are by how we’re handling Hailey’s death and how strong and mature we are, etc. And the thing that is bothering me from Hailey’s service was when the funeral director had everyone there applaud us for our strength, etc. I really felt that was inappropriate to be honest.

I am glad people are seeing our strength during this difficult time, but I need to make something clear…
all of the joy and hope and strength we have is supernatural – God-given. So it’s like the Chris Tomlin song “Not to Us” : “Not to us, but to Your Name be the glory.”

So I appreciate everyone’s comments praising us for our strength, etc. and I truly appreciate that – but really it’s not us – this is all a God thing. We are weak and grieve and are sad. But God has given us strength and hope and joy and everything we need to get through this.

There are several Biblical truths that I am seeing played out in my life that speak to this issue:
2 Cor. 12:9 “But He said to me, “My grace is sufficient for you, for My power is made perfect in weakness.” God is definitely displaying His power in our weakness right now…

and…”Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think”. Ephesians 3:20

God is accomplishing more in us and Hailey more than we EVER could have imagined.
So don’t praise us – PRAISE GOD and give the glory to God!

And keep praying for us because we need prayers and God to get us through this.

Heaven’s Prayer

A meeting was held quite far from Earth.
“it’s time again for another birth.”
Said the angels to the Lord above.
“This special child will need much love.”

Her progress may seem very slow,
Accomplishments she may not show.
And she’ll require extra care
From the folks she meets way down there.

In many ways she’ll have to fight strong
But with much love she will belong.
So let’s be careful where she’s sent,
We want her life to be content.

Please Lord find parents who
Will do a special job for you.
They may not realize right away
The leading role they’re asked to play.

But with this child sent from above
Comes stronger faith and richer love.
Their precious charge, so meek and mild
In Heaven’s very special child.

Bringing Hailey Home Tuesday, December 8, 2009 at 6:49pm

First a few updates, Hailey had a very good 1 week birthday today. She is taking in the minimum breast milk requirements through a bottle for her to be off her IV and come home! Today is her best feeding day since she started! So we’re very thankful for that since she had been having problems swallowing. Her stitches / tummy incision are healing nicely so far. And tonight we’re learning how to put in a feeding tube in case Hailey can’t take in the nutrients she needs via the bottle.

So the plan right now is for us to take her home tomorrow sometime! We needed to reach the feeding milestone – which she did today. Then we needed to figure out getting oxygen ready for her at the house – which also thankfully got taken care of. We will be sent home with an oxygen tank for traveling and all she’ll need at the house is oxygen, morphine for when we feel she is in pain, and feeding tube supplies in case we should need it. Everything will be taken care of by the local hospice where we live. We will work with one of the hospice nurses to figure out a plan for caring for Hailey – we’re initially thinking of having the nurse come once a day just to check on things – maybe less since Hailey has been doing so well. Unfortunately the drive home from Birmingham is close to 4 hrs so we’re praying that the car ride goes smoothly and she just sleeps most of the time. We don’t know when we’ll be discharged but at this point it should definitely be tomorrow.

I’m incredibly thankful to have the opportunity to come home with her. I will also honestly say I am a little nervous about it, but its definitely where I want her to be and believe she needs to be.

So those prayer warriors out there – please pray that our discharge and travel home will go smoothly and that little Hailey will do great throughout the process so that we can get her to her home. Please also pray that God would bless her time at home with us and give us (and any doctors, nurses, etc.) working with us the wisdom to take care of her and keep her comfortable. And please pray that Hailey continues feeding well with the bottle so that we don’t have to use a feeding tube. Thanks!!!!!!