"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Thursday, July 30, 2009

Not liking the quiet moments much these days

She hustled the whole hour! Way to go Mookie!

Brother came along to see what all the fuss was about.

Ready for first practice. Been counting the days.

Thanks for checking in. Connie had a very good, maybe even great day. He played, jumped, talked and ate more than he has in days. We praise God for hearing all of our prayers and for giving him some peace and allowing the meds to help his heart function under less stress. We spent the day having speech therapy, exchanging Mookie's soccer shoes and going out to lunch. We had too much fun trying to nap (me, Mook and Connie) that we never slept but we rested some. Then after a quick snack it was off to Mary Kathleen's first soccer practice ever! Connie tagged along too. He didn't eat dinner but had a bedtime snack. His eyes look a great deal better today so it's good that we were able to take a bit of a break from the Lasix for a day.

While Connie has improved, we have kind of gotten stuck in a rut. Greg and I look across the room at each other several times a day and both just start welling up with tears. For me, I'm finding as long as I'm busy taking care of the kids or updating people via phone or computer, I'm "okay". Once it gets quiet and there's no one left to share with, that's when it starts getting hard. That's when my mind goes numb and I feel almost paralyzed. Little things like watering the flowers or even exchanging those shoes today feels like such a chore. Like, "who cares about any of this stuff? My child may have to get a transplant. None of this other stuff matters." But it does matter. There is still life to be lived and we're going to miss it if we don't pull up our boot straps and face this. Like my friend Sarah, who I met in Michigan when we were there in 07 said, "There's still snack day at preschool." By this she meant that even though we may be in this situation, dealing with life and death, our other kids still have their lives and important things to them and we still have commitments that have to be met. It's just so hard. We're meeting with our pastor tomorrow morning to try and get a better understanding of suffering and just to pray with him and have him bless and pray over Conway. We pray that this helps us get some peace. It just feels like we've been blindsided. The whole reason for having a double switch was so that the word transplant would never have to enter our vocabulary and now it has, and so soon. Makes me question why we put Connie through all that suffering from 8/07-5/08 just to end up needing one (transplant) about the same time he would have probably needed one had he never been switched. Sorry to be such a downer tonight. It was just a pretty hard day all around.

Also, don't forget about dear Ella tomorrow morning as she undergoes her double switch.


Lisa said...


I am praying for you! Try not to get sucked into questioning past decisions. It doesn't change anything! You made the right decision for your son and family at the moment a decision had to be made. And you'll make the right decision again. And again. Don't look back, only forward. We can all question whether or not we made the right decisions back when...but if we do, it'll drive us all crazy!

It IS still snack day at preschool. Don't miss a minute of snack day thinking about 2007!

I hope you take this in the spirit it is intended. Know that you are being lifted up at this very moment-and many more throughout the days.

Take care~
(Eli's mom
L-TGA yahoo)

Lisa P said...

I'm still so confident that the word "transplant" may not be a very prominent one in Dr. Bove's report. And if you send off your records anywhere else, I'm not so sure it will appear much in their reports, either! This is a tough time while you wait, I know. Lots of uncertainty, but remember, this too shall pass, then the healing will begin!! Hang in there!

Peace to you - LP

Donna Beckemeier said...

Hi Erin. If there were no space between you and all your friends and family, you would be smothered day in and day out with the hugs we all long to give you. But God is good and he will hold you every minute if you can let him. I know he has Connie in his arms. He always has. I hope you can find some peace in living your life as God intended you to. Careful not to drown in the sorrow you feel, but to light your life with the important things... like snack day at preschool. Life and love is the little things.
I am lifting you all in prayer right now. I will be praying every hour on the hour until... well, as long as it's needed.
Love you much
Aunt Donna

meesha2601 said...


You have every right to be in a down mode. Don't apologize for that. You are facing one of the hardest things that us heart moms have to face and you are doing it with faith and courage. You should be so proud of yourself. Of course sometimes are going to harder than others. Especially those quite moments. Hang in there you are doing a great job. You're continueing to live life and find some joy and happiness.

"Live for today and hope for the future" is my motto.

We are all praying and thinking of you everyday. I wish I could see you tonight but I have no one to watch Lorelei. I will be thinking of you guys. Have a great time and try to relax.

Heart Hugs,
Nicole mom of Lorelei HLHS

Krissy said...

Hi Erin, Conway and family!
I cant believe how big Conway is now! You have a beautiful family!

As i'm sure you know, Sofia is now a post-transplant baby. I wont lie and tell you that everything was easy, because it wasn't. It was hands down the toughest thing ive ever gone through. My one piece of advice is to have him listed at a high volume hospital, typically in a big city.

If the docs are anything there like they are here, they will give you little hope. While in the 7 months we spent at the hospital waiting for Sofi's perfect heart, she and 2 other kids got their hearts as well. These were kids that the doctors had pretty much admitted would never get a heart. They all have perfect hearts now!

I'm not saying that things turn out how we want them to all the time, as that is certainly not the case for everyone. I just hope that I can give you a glimmer of hope, and be a testament to the fact that this is possible.

The doctors will warn you, that the high antibodies will make it hard to find a heart and that Conway will be on so many meds after transplant. Its honestly not that bad. Sofi and the 2 other kids got great matches, even though the odds were heavily stacked against them. And the meds, yes, there are many... but its totally manageable!

In hindsight, I wish we had opted for transplant from the very beginning. Sofi is a happy, HEALTHY, almost 2-year-old, and the new heart in her makes all the difference.

Please contact me anytime you need to talk or vent, and trust me, you'll need to vent quite a bit if you're anything like i am! lol

Love and hugs
Krissy LaPres

Arlene said...

Dear Erin, Greg and family,

Had no idea this was all going on. There were two moments after Jeremiah's double switch when we were talking transplant. It's been 2 1/2 years and still no transplant for him. I'm hoping there's something else that can be done for Conway. If it is transplant, then we face that with thankful trepidation, right? We will join your team of praying warriors for Conway's health. Also praying for you, his parents, for courage, wisdom, strength, and peace that only God can give.

Annie said...

So I dont know much about heart transplants, I cant begin to truly understand how painful this trial has been for you and I can only imagine how difficult it must be to watch Conway have to go through all these tough times. But I do know how wonderful God is, I understand from reading your blogs how incredibly strong you all are and I can only imagine how special Conway is. I feel that when you add up all of these great elements regardless of any decision made, the outcome will be nothing less than positive.