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Thursday, March 18, 2010

A joyful limp on a Spring day ~ Thursday update

My Lover, friend and teammate!!

a joyful limp on a spring day!!
I'm tired right now. I think the past week has just started to really hit and despite a relatively good night's sleep, (Paisley is teething), I'm still tired. There is an emotional weariness that sets in when I'm in the hospital, all the beeping, the nurses in and out, the consultations with the Doctors, the general energy puts me at an elevated level inside. It doesn't do the same thing to Jake so that's why he can sleep well in there at night.

Another thing I'm working through and processing is trying to maintain a "normal" for Luke and Paisley. I feel like my grace level isn't as high for them and yet they need me just as much as Tyler does, just not in such an obvious way. Would you pray that I would have a new injection of compassion for them? They want Tyler home as much as I do. They want "normal" as much as I do. I just don't feel like I have much left to give to them and that is hard for me.

When I came back in this morning Jake said Tyler had a fever of 102* again last night. I was disappointed to hear that, but Dr. Bridgeman doesn't seem too concerned. He just knows that Tyler's body is still fighting hard to knock this stuff out. The infectious disease Dr, (can we PLEASE come up with a new name for him?) said tonight that Tyler's picc line might be infected! Oh Lord, no! We will know by tomorrow night. sigh. They took some blood from the other arm, (none picc arm) to compare it with the other cultures. So much blood being taken from him. It unnerves me.

The blood culture that has been negative for 24 hours has now turned positive, so that means the staph (bacteria) is still growing, but at a slower rate. It's amazing what "good" news means when you're in the hospital. Normally when you hear your child has some crazy stuff growing inside them, it freaks you out. But we're on the other side now, "oh, it's not growing so fast, how wonderful!!" It's weird.

Tyler was talking about how much he misses his house. "I'm staying here longer and longer, I miss my house and my toys and my bed." So I took a picture of our house and brought it in for him today. When he saw it he hugged it to his heart and closed his eyes. He said he wanted to stare at it "until I fall asleep." So, he rolled on his side and I propped it up against the hospital bed railing and he stared at it until he couldn't keep his eyes open anymore. I had to cry for him once he fell asleep. I wonder what was going through his mind and heart. Home is such a BEAUTIFUL PLACE!! Later on I'd like to talk with him about how "home" is wherever WE are, but that wasn't the time.

starting to walk alone

We went outside this afternoon and Tyler wanted to walk alone, (first time since last Wednesday). Later on this evening he was playing in the playroom down the hall and I was straightening our room. Suddenly he appeared in the doorway with no wheelchair. "I just wanted to get one of my engines", so he got one and hoppled back down the hall. I just stood there and watched in amazement. He's awesome!

The water fountain is up and running today. We watched them filling it yesterday. What is it about that water fountain that makes hope rise up in me? I guess because it's been a cold, empty pit all winter long and now a few guys came, cleaned it up and started pouring fresh water into it. And in less then 24 hours it's spraying beautiful streams of water and bringing a smile to those that see it.

I feel like that cold, empty pit and know that my Source is filling me up afresh even when all I can do is whisper "please God". I'm not quite to the "spraying beautiful streams" right now, (except out my eyes)!!

Five things I am grateful for right now:

1.) That it's 2010 and not 1910 because my child would be dead by now.

2.) That Jake actually likes the fuchsia ralph lauren shirt I bought him and he wears it with pride, (and looks mighty fine in it too)!!

3.) Someone, (I have no idea who) sent me 12 of the most amazing, ginormous gourmet chocolate covered strawberries, kept cool and delivered to my door from SAN flippin' DIEGO!!!! My dear friend Jess joined me last night in the hot tub and we enjoyed a few together. You will wish you were one of our nurses because tomorrow will be their special day!!!

4.) The above mentioned friend came to my house and planted pansies in my flower boxes and urns. We have the.most.amazing.friends.ever.

5.) YOU!!! if you're reading this then you love us or at the least are curious enough to see what's going on and must care a little bit about our lives. We have FELT your love and concern and thoughts toward us and WE ARE THANKFUL!!!

I've gotten alot of emails & cards about how "amazed" and "inspired" people are at our positive attitude. I look at it this way, THERE IS NO IN BETWEEN. At least not for me. It's a slippery, slippery slope into pity, worry, doubt, and anxiety so I'm not even going toward that slide. It's a steep climb the other way and not easy, but there is GRATITUDE, TRUST, SURRENDER AND PEACE at the top of that ladder and I WILL CLIMB IT. I will say that this "attitude" comes "easier" the more you practice it. I'm not feeling so great all day long, for sure NOT, however if my mind tries to slide I CHOOSE TO BRING IT BACK.

Like I said to a dear friend today, "I will not let ALL these years of planting God's word in me come up fruitless. I will not."


The kids are settled
and my strawberries are waiting for me.

See you tomorrow.


Esther@fleurcottage said...

janelle, we want the fruit of godliness w/out the lesson of pain but pain is the lesson that builds character in us. your honesty & realness shows you are 'doing pain well.' blessedness!

melissa hoffman said...

Hang in were all in my thoughts today!

Jessica Sue said...

Tyler amazes me... what a great little guy!
(And I just wanted to say that I saw Jake in his shirt today and I did think about it and how I wished Aaron would wear a shirt like that proudly!)
You are all constantly in my prayers.
With lots and lots of love,

Bryan Allain said...

infectious disease doc = Dr. Catchy?

Mark and Heather said...

Hey Janelle...
You guys have been on my mind a lot these past days. I woke up to feed hope in the middle of the night and realized I was dreaming about you. In the dream i was helping you to fix a broken necklace. Not sure the meaning but I prayed for you guys. I then went back to sleep and dreamed about you some more! All that to say YOU ARE ON THE LORD;s HEART!!!!
I am so encouraged by your realness and faith. BE BLESSED TODAY!


Anonymous said...

Yea for the fushia shirt...what a man!!! Love little blessed to stare at his "home" picture until he was asleep...!!!Love you all!


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Anonymous said...

sorry. trying to leave a comment and having difficulty.

i am glad that you are finding peace and positivity in the middle of all of this. like you said, "it takes practice" & this will only make you stronger for bigger storms that may/could lie ahead for you & your family. you are getting a small taste of adversity & pain (which is hardest when it involves your child) & i pray the lord continues to shelter you with peace, rest and strength.
i pray you can continue to find thankfulness in each moment and what you have been blessed with already. even in the midst of this, there is SO MUCH!

love you.

Dave said...

Hi Janelle!

I just now am getting filled in on the details from your blog!!! I had no idea!!

You all are such troopers!! What a testimony you are to the nurses and doctors!!!

I can just see Tyler's room!! You bring sunshine to life even in despairing times!!!! I am so glad to hear the good news, that he is doing better and walking today!
ahhhhh! that touches a mother's heart. Enjoy your chocolates! They look so yummy. We are definitely praying for you. May God continue to hold you and give you peace and grace for each moment! We are believing for his complete healing, and look forward to a great report!!

Love you all,
Connie (for Dave & I)

consume me... said...

So...I'm a stone's throw away from the hospital as I type in a Pregancy center down the street. You and Tyler are heavy on my heart this week...and so you've been prayed for often. I hear the fatigue in your voice, but see the JOY in the pictures and in the resolve of your words. You need only ask for strength for your next moment...and then the next. In the process your babies will see the Source of mommy and daddy's strength and come to mimic it in their own lives.
Stay strong and lean ARE on His mind all through the day and the night-evidenced by those who "randomly" think of you at all times of the day.
Wishing I knew if you were over there in that sterile place right now...consider yourself loved from just a hop down the street!
{Ps. Jake-wear the shirt more often...apparently it is a hit w/everyone!}

Sheila said...

Just dropping you a little note letting you know that I've been checking in and praying for you.