"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

Sunday, July 26, 2009

A New Definition of "Good"

Yesterday (Saturday) was a good day for Connie. He ate a little and played a little. He seemed good enough to go to my cousins wedding reception so we did. While there, he laid on my lap or slept in the stroller the whole time except for a brief look at the fish with grandpa. No throwing up and no misery and acting uncomfortable for the most part so I told Greg as we were leaving the reception that I thought Connie had a good day. Then I saw a dad leaving the zoo with his two year old son on his shoulders. He stopped and lowered the boy to the ground where the boy promptly took off running. Seeing this made me pause and think, "No, now that would be a good day. Connie should be running and active and playing like a normal two year old." I got kind of down after that. He had a restless night again and was so tired today. He hardly napped at all though. This morning at mass, the homily was about God giving us enough. How we pray for our daily bread and we get it. It may not be what we'd like or think we need, but it is enough. That brought me back to yesterday. I want Connie to be like that other two year old. I think I need him to be "normal". In reality, it needs to be enough that he's able to walk, able to play a little, able to eat a little. It is enough, I just need to accept that it is. This is our new "good day".

Today was not so good. Today he barely touched his food and whined all afternoon. I kind of lost it for a minute when I saw him try to carry his little learning laptop over to grandpa and he couldn't pick it up and carry it. He used to be able to carry it. It's not heavy. It's a child's toy. He wasn't happy unless I was holding him, and even then he was restless. He did finally have some goldfish and a yogurt drink around 4pm. He refused dinner and after a nice long bath and being a little perkier for awhile he nestled into bed easily at 8pm sharp. Five minutes later we heard a blood curdling scream and ran in to find him sitting in vomit. I guess he never digested his goldfish :( He got another bath and is now laying on Daddy's chest watching a movie. Hopefully he falls asleep soon because he has a big day tomorrow-and it starts early! I'm apprehensive and scared and all those things, but most of all, I don't want it to be like this any more. I so want this suffering over for him. Even if it gets worse before it gets better, it's got to get better than this.

10 comments:

stove said...

Your post tonight broke my heart. It is almost unbearable as parents to watch our little ones struggle through this disease. We have to live one day at a time and appreciate every moment we get to spend with our precious children. Here is a poem I read when things get really tough.

Prayer
by Gail Brook Burket

I do not ask to walk smooth paths
Nor bear an easy load
I pray for strength and fortitude
To climb the rock strewn road

Give me such courage I can scale
The hardest peaks alone
And transform every stumbling block
Into a stepping stone

Thinking of you,

Steph and Lily

Anonymous said...

My prayers are with you all! I hope tomorrow brings some peace in your worried minds and relief for Connie. Take Care, Carey

Yvonne Mallon said...

Erin,

I am sorry for such difficult days Conway has had the past couple of days. I hurt right along with you. Remember what your cardiologist said, it won't be like this forever, Connie will start feeling better.
I eagerly wait to hear what tomorrow's workup shows.
Call me anytime.

Yvonne

Anonymous said...

Erin, I know this is an extremely hard time for you and Connie but God will see you through all of this. Just try to keep remembering what the doctor said. It won't be like this forever! Always in our prayers!
Mindy

Lisa P said...

Oh girl, I'm so sad for you guys this morning reading your post from last night. I know its so hard to watch the little C-man go through this. Remember, this too shall pass. This morning marks the beginning of a new road - toward improvement. Hang in there. I'm here with you all the way.

LP, G, Nate and Scott

Anonymous said...

Well, I don't really know what to say since I can't imagine going through everything Connie is going through, and having to watch as a parent, virtually helpless as he throws up. But he is the most resilient child I have ever seen, and he'll come around again. Everything takes patience and time - and probably a double dose of patience for parents because you so badly want him to be "normal." But all of these experiences will shape who he is, and will allow him to see the world in a different light, a light that the "normal" child will never understand. Hang in there, and let me know if you need anything.
Love, Jessie

Faith M. said...

Erin, I'm praying for a good appointment today and that you learn lots and come up with a good plan.
I also pray that Conway will soon be running and playing with so much energy that you can't keep up. You are right, he deserves that. Praying for peace, wisdom, energy, and strength.

Anonymous said...

It is hard for me to imagine how anybody could deal with this without the strength that you have and that you show every day - a strenght that can only come from our gracious God. May he continue to sustain you and hold you all in his arms and see you through to better days. Know that all of us who are travelling this journey with you will continue to pray for Connie and for you and Greg and the rest of your family. Remember - "if God brings you to it He will bring you through it".

Carlg said...

Erin & Greg, please know we are praying for you regularly, but especially today. May it bring some answers and plans, and bring you some peace and reassurance. I don't deal well with "the unknowns", and was telling Carl that yesterday after reading your posts - catching up from being out of town for a week... It would be hard to have so many questions - may today's tests provide some information that bring answers instead.
Was hoping to have a chance to talk to you and give you a hug after Mass - I'll be thinking about you all day today, though.
Blessings,
Debbie

Ellen McDonald said...

Erin, i've been thinking about you all this morning, hope that the medical team can come up with a good plan to address the situation - - so sorry to hear what you've all been going through

ellen (Yahoo L-TGA_