Wednesday, March 25, 2009

6 months..............

As I sit here in our room at the RMH waiting for a return phone call, I just can't help but get emotional. Tomorrow marks 6 months of us being here at U of M. Thinking back to all that our sweetheart has been through since the beginning of October is just simply amazing that she has persevered through it all. The only explanation that I have for it is that God has a plan and I can only hope that because we have been here for so long, that the end result will be that we take her home with a new 4 chambered heart for her to enjoy for a long time! I ask myself allot...."Why is God having us wait so long to have this happen?" My logical (or hopeful) answer is that the princess is waiting for things to be just perfect and God is going to oblige. She is just the most wonderful little person ever! She is making new leaps and bounds everyday and it is so fun to see her go through those "normal" baby things. Yesterday, she waved! Backwards of course. ;-) And you all know me by now.....I cried! hee hee I also picked her up under her arms and lifted her up and down......she laughed! Of course, I cried with such joy! Oh, I wish we were home! I so want to take her for a stroller ride in the beautiful park that we have as our backyard and all of the simple things that we would normally do as a family. God has a plan and my heart says that He is waiting for that perfect time.
Before I left this past weekend to go home, a beautiful family from Kansas moved into Moderate Care with us. They had a son, Jonah, which I think looked to be around 1 1/2 or just about 2 years old and then their new addition, Hope. She looked about 3 weeks old. Just a beautiful little girl with a beautiful family to go right along with. Hope is a fellow heart baby. While I was at home, I did some shopping for a few things for work and a couple of seasonal scrap booking items. Of course I always end up around the frames. (I have a fetish with frames!) I walked around the corner and there it was. The perfect frame for Hope! It was pink with a cross and hearts on it. It also displayed her name right in the middle at the bottom. I love this name as it also has such a powerful meaning. So, I bought it for her. I got back to the hospital around dinner time on Monday and Hope was gone. I asked the nurse which room on the floor she was in so that I could get her this present. Her look was all I needed. I was in shock. Hope passed away Sunday evening. Apparently she had a clot pass through her shunt and of course at that time, there is nothing they can do quick enough. Of course, I sat, holding Lindsay, and cried. My heart ached for them. Why God? Why take her and give us all this time with our baby?
I tried to figure out how on earth I was going to get this gift to them. Then last night, Sara and Aaron appeared. It was like a gift given to me because I really needed to see them and wrap my arms around them. Thank you God!
So, when I was sitting with Lindsay after I heard the news of Hope's passing, I just sat a rocked with her trying to figure out why we still have her. Why have we been so lucky? Yes, folks, I said lucky. We are. We have had this wonderful time with her to see her grow and develope into a delightful little person. Remembering back when we first found out about our "little Sweety" (that one was for you Dad!) we had all of these tests done to see if other than her heart issue, if she could possibly have the potential at a good life. No parent should ever have to decide this but all in all, we chose life! Lindsay has turned out to be an absolute miracle and we have enjoyed, even the bad, every single minute! Thank you God!
I also can't help to think if this whole thing is a lesson for us? Is it a lesson to learn more about Him? Is it a lesson to care more, love more, live life to the fullest more? My husband sometimes tells me that I look into things too deeply. Yes, sometimes I do. But, sometimes I do for a reason but really don't know what that reason is until later when something happens and it "smacks" (for Rebecca! ha ha) me right in the face! Oh, how I wish I had the answers...........
Now that I have every one of you in tears, we continue to ask for your prayers for our princess and that she will be home with us.....in His time. Love to you all as always~
Love, Suzie

22 comments:

Katie said...

Beautiful post Suzie...yes, I'm in tears. I'm so sorry about Hope, what a complete shock. Maddie's first BT shunt clotted, but thank God she was still in the OR. Lucky isn't even the word for it. We have been so blessed and I feel guilty for this since so many heart families have it really rough. I truly admire your gratefulness and attitude through this inspite of living in the hospital, watching your baby girl have to endure so much with so many unknowns to face. She is a remarkable little girl...sounds like she's making the best of this situation just like her mama. :)Lindsay and your family are always on my heart and in my prayers...hang in there, you're doing awesome and you are an inspiration to so many of us! Thanks for sharing this post with us. Love to you Suzie and give Lindsay a big hug from us!!!
Katie & Maddie

Anonymous said...

I couldn't have said it any better than the previous comment! Our love and constant prayers are with all of you. Here's to being at home with your beautiful girl before much longer!
Love, Debbie and Rick

The Simmons Family said...

Of course we will always PRAY for Princess Lindsay. I don't know the whys? But I often ask myself the same questions.

Why are we so lucky to be home with Owen when his heart is clearly failing. Why is he holding up so well on his oral meds? Why are we blessed with so much time.. when others are not.
My eyes tear up, I hug him more and I PRAY for more time!

We're praying for LIndsay's heart everyday. It will come and it will be perfect. I will pray for Hope's family and their great loss.

HUGS.

The Mama said...

These previous posts came clear then what I could have said. I haven't been in your position before, but I tell my husband all the time, and others, about the sites I visit and about the kids. And you are on our list. We're praying for you!

Anonymous said...

How beautiful Suzie - what a wonderful thing it is for you to share through the blog. Maybe part of this to help us, all of the readers learn how to love more, cherish more, and be strong like you and JR. You inspire us to be better friends, better parents, and just all around better people. Thank you for being you. We love you guys!

Kristen, Travis, and all the babies

Steve said...

How beautiful! Yes, we are so lucky to have these sweet little heart babies. Of course, it's important to look into these situations deeply and try to understand God's plan. I think part of it, as you say, is for us to learn important life lessons. Everyone has trials and tests; this is one of our many. In the end, we can only surrender completely and fully to God's will. By these trials we either grow in faith and become nearer to Him, or we resent His will and walk away. Your family is growing nearer, and bringing so many others with you through Lindsay's story. Thank you!

Danielle Holtzman said...

Bless your heart! You are enduring what most of can not even imagine... and you are doing so with grace, faith, and honesty. Like you, I've been feeling a constant nagging to ask God "Why"... there is so much suffering in this world and it's hard to not question "why". To completely succomb to God's will is so difficult for me, and I can't imagine how difficult it would be if I were in your shoes. You are very "human" and normal to feel the way you are feeling! I was reading a blog post late last night on the topic of "miracles" and this is whay Angie said:

"there are moments in life where He allows you the grace to survive what seems impossible. It is what happens when a follower of Christ leans so deeply into the Father's arms that there is no chance of falling.

No matter what.

It happens rarely, and it happens in a way that cannot be explained, but when it does, you know in your heart that God is in your midst.

What a miracle..."

I cried as I read that... thinking of you, of Rebecca, of others I love who are enduring hardships.

Suzi... I pray for a miracle for Lindsay EVERY day, but I also pray for the miracle that you will find rest and a great peace as you sit in the hospital for days on end. God loves Lindsay even more than we do (if that's possible!) and He has a PERFECT plan for her... and you!

Thank you for sharing yourself and your precious daughter with us... through her, we are ALL learning great lessons about living, trusting, and persevering.

My prayer for you today is that you will lean deeply into the Father's arms... where there is no chance of falling and that you will KNOW that he is in your midst!

And my prayers continue for the Princess... for I trust that the Lord has great things planned for Lindsay. Her perfect heart will arrive in His perfect time... it WILL!

God Bless You, Suzi!

Danielle

P.S. I knew that princess frame jumped into my hands for a reason... I didn't even know you had a "frame fetish"!

P.P.S. I had my computer opened up to Lindsay's blog site and Noah jumped on the chair and asked..."who is that cute baby"! When I told him it was "Baby Lindsay" who we pray for, he smiled the sweetest smile, and said "How did they get that so cute baby?" I told him that just like him, she was a very special gift from Jesus!

Evie's Story said...

Suzie,
In tears, but you know that Im sure:-)
I can so relate to so many of these emotions. Im overwhelmed many days.
Thankfulness.
Grief
Confusion
Assurance
its complicated! You know your little one is so very dear to our hearts too and we praise the Lord for each day he gives you to love her - and PRAY for many, many, many more! She is a miracle already!

I know you have a million things on your plate, but my kids wondered if Lindsey and your guys got the Valentine package?

The Hands said...

Susie,
I remember going through the same thing wondering why we were allowed to keep Natalie when other families lost their children. So know that you aren't alone and there are so many more families that cry with you. Of course there aren't answers to our questions but I found peace in knowing that ALL that I went through can bring praise to God.

After Natalie had been home a couple of months and we had been through the worst part with her, I finally got the time to read an article that was sent to me by a friend who has a boy with cerebral palsy (2 months older than Natalie). It talked about prayer and how to pray when life hurts so much and we just don't understand the reasoning for our circumstances.

Chris Tiegreen (Pray magazine Mar/Ap 2008) says, "The praise we offer when our desperate prayers remain unanswered is far more precious to God than the praise we offer when all is well. Praise is a determined resolution. Desperation and praise don't share the same prayer time unless the person praying has been trained to blend them. We have to learn over time-and usually through a crisis or two-to see our hard situations as rare opportunities to honor God with unusual praise. When else in all of eternity will you have the privilege of claiming God's goodness when everything around you dictates against it? Not in heaven; God's goodness is openly visible to all. Not in the celebrations of this life; His goodness is easy to see when victories graciously are handed to us. No, the only chance you'll ever have to worship God from a pit is when you're actually in one. And those times are limited to this brief window of eternity that Paul refers to as 'light and momentary troubles' (2 Cor. 4:17). If we're ever going to honor God in the worst of times, it has to be when we're experiencing them.
Prayer honors God most when it's worshipful in the absence of visible reasons for worship. It's a defiant statement that no matter how much the world, the flesh, or the devil obscure His goodness, He's still good!
When we offer a sacrifice of praise from a painful place, we bring light into darkenss. Eventually, the darkness has to give way. Those who seize the opportunity to blend praise with their desperation are giving the ultimate testimony to God's goodness."

ISN'T GOD GOOD!
Bless you,
Angie

Anonymous said...

Well said Suzie, somethings are not for our understanding, but we know He is Always Faithful.

It was Uncle Tom's (Bowling) passing that led me to the Lord, lets all hope it's Lindsay's life that leads more to make that decision.

with love, The Shaff's

Stephanie said...

I'm praying that her heart is coming soon and she'll be home where she belongs with your entire family! She's got a way about her...when you look in her eyes she just grabs your heart. I have been amazed since I started blogging how you can become so invested in someone you've never even met. Lindsay is constantly in my prayers!!! Sending love and hugs your way.

My heart breaks for Hope and her family. They will be in my prayers!

Danielle Holtzman said...

Oh! I forgot... the other cute thing Noah said about Lindsay's picture was "she has blue eyes... like us... they are big!" Thought that might give you a smile :)

Stephanie Winter said...

Oh Friend!! Thank you! I needed a good cry! That was beautiful and she is beautiful! Can't wait to see you and her next week. We love you and are praying for you today and everyday! 6 months!! That means our boys are 5 1/2 this week! Stay strong!
Steph

Anonymous said...

Suzie, I've been waiting for you to vent on how all of this is affecting you. Yes, God is the only one who knows what his plan is for all of us. We just have to be patient and understanding. All I can say is, Lindsay is a little fighter and she's here for a reason, for all of us to LOVE her! You and your Family continue to be in our Prayers - she is waiting for that perfect little heart. Until then we just keep Praying! Hugs! Sara Dziewicki

Cara Winter said...

I love you, Suzie. I marvel at your strength, my friend.
Our thoughts are with you, every single day!

Love
Cara, Warren & Avery
(PS: the photos from the Dinner are COMING, I swear...)

Talia said...

Suzie,
I have followed your blog for a while, but this is the first time I have ever posted. What a beautiful post. I will pray for sweet Lindsay especially hard tonight and think of sweet Hope.

ann said...

I am a true stranger, but have followed Lindsey for a long time. I check you every day - and pray for the day we all see "We have a heart!" You are the most relentlessly positive, ceaselessly optimistic and consistently vulnerable PICU resident - it shows in your sweet daughter's face. Prayers your way, AM and PM - and PRN.

Amanda Groulx said...

You really should put a disclaimer on posts like this! Some people read them during class while pretending to take notes. My professor probably thought that it was his piglet diarrhea lecture brought me to tears--which it almost did. Lindsay is a miracle and you guys have done a wonderful job balancing everything that has been thrown at you.

Keep on keepin on! You're always in our thoughts and prayers.

Love,
Amanda

Mimi said...

Oh, the waiting truly is so difficult. When I was waiting with Mia I knew there were families out there that waiting for a long time. The only families I had met personally where the families that didn't have to wait that long. One of them 30 hrs!!

Our call came at 4 months and 1 day- and she got a great heart and was out of there. The doctors still talk about how quickly she recovered and how well she has done.

I like you felt tortured living in a hospital. I would get to know parents and then see them have to deal with the pain of loosing their child. It was too too much for my mommy heart.

I just kept telling myself that one day... ONE DAY... I would look back on this time and feel peace. The call will come- and when it does she does have that perfectly functioning heart. It is almost too much watching the echo's post transplant- they look "normal."

You are inspiring! and so is that sweet little girly.

Go Lindsay Go!

Anonymous said...

Suzie,
We are so praying for all of you. I have had your family on our prayer chain at church since before Lindsay's birth and often am asked, "what should we pray for specifically?". That is a hard one. Wanted you to know that all of you are prayed for daily and we love you so much. Hope to see you again soon.
Kirk, Jody, & Erin

Anonymous said...

I thought it would be easier to leave a post if I waited a few days; it is not. My heart so goes out to you, JR and boys. This has not been easy on any of you, yet you all remain the positive and wonderful people and family you always have been. I have always admired yours and JR's parenting skills and you have not fallen short one iota with Lindsay. It is evident that God has given you all additional strength to get through this and we all pray that the blessing of a new heart for Lindsay comes soon. I wish I was there to hug you Suzie. My heart goes out to you. You are all in my prayers. I have lost two chilren but never had to endure what you have.

Much love to all of you.

Nancy

Anonymous said...

Suzie,

I've followed your story through my daughter Katie Allred......I feel as though I know you personally...and feel a connection to your family... I can only offer this to you, these times will not be forever, and your life will feel normal again. Please know that the suffering you are experiencing is a privledge in His eyes. Here is a scripture that I gave to Katie some time ago... and I have given to other "Heart" moms. I hope it will help.

"Dear friends, do not be surprised at the painful trial you are suffering, as though something were happening to you. But rejoice that you participate in the suffering of Christ, so that you may be overjoyed when His glory is revealed. 1st Peter 4:12-13

Love, Susie Stewart