Wednesday, March 12, 2008

 A moment of truth

I love it when others perceive me as a very patient, nurturing, motherly type. There are certainly elements of my personality that fit two of those qualities, but some days they are quite far from the surface. Patience has never really been a strong point for me at all.

I have often talked about the blessings we have experienced due to having K in our lives. It's easy to rave about his sweetness and all of the wonderful things he brings to our lives because it's so true. In a rare moment of authenticity (Authenticity=vulnerability. I am petrified of vulnerability) I will share something with you. There are times it's really hard. There are certain aspects of K's cerebral palsy and development delays that I really stress about.

The most difficult thing for me is K's eating issues. For some reason eating issues are a very common struggle for most prematurely born children. Some days K actually gets hungry and eats decent, other days if it weren't for my pushing he would go through the whole day with out eating any thing. He very rarely gets thirsty. The most he has been able to drink on his own in one day was about 8 ounces. We use his gastronomy tube for about 50% of his nutrition and 75% of his liquid intake. I have medical professionals telling me what I need to do for him to keep him growing, healthy, and thriving. Between 1300 and 1500 calories. 40 ounces of fluid daily. If they only knew. I realize that is what he needs, but practically speaking it is a near impossibility. First of all he is in preschool for half the day, so during that time I can not be pushing food and liquid on him. Also, even with using his G-tube he has a threshold of about 6 ounces at a time. It's not like I can just pump him full of whatever he needs. He looks up and me and says, "mom, my belly is full", usually after about 3 ounces. I am learning that tedious balancing act of how much I can push. I have learned not to push too much too quickly. That's just not pretty.

At K's 5 year Dr. appointment I was told that he wasn't getting enough, wasn't following the growth curve on the chart and that I needed to add about 250 calories to his diet per day. I nodded my head and tried to smile. Yes, I have other children and other responsibilities. Perhaps I could spend a bit more time in my day trying to get Caleb to eat and drink more. NO, I would not put my own convenience above this child's needs. I am his mom. I want this more than any body does, but maybe she should live with us for a couple of days and experience how it is. There are times that he simply will not eat. He was 36 pounds in January. He was 33 pounds last week. He had been sick, but this Dr. didn't take that under much consideration.

The other day I watched Dave at the dinner table with K. I knew he was getting frustrated with the slow feeding process. He gently took K's face in his hands and said, "K, you have to eat to live!". Dave is one of the few people I know who can handle frustration with gentleness. He was so gentle with K while trying to reason with him. Dave is the one who so often reminds me to relax and trust God. God has brought K through so many other medical issues. Most of them have been far more serious than the day to day things we deal with now. To have anxiety over these things shows a distinct lack of faith on my part. But this is me and now you have it. :)

I really want to internalize the words to a song that ministered to Dave and I when J.D. and K were born. "My Redeemer is faithful and true". Some words that re play in my memory: As I look back on the road I've traveled, I see so many times He's carried me through. If there's one thing I've learned in this life, my Redeemer is faithful and true. My Redeemer is faithful and true. Every thing He has said He will do. Every morning His mercies are new. My Redeemer is faithful and true.
May I never forget it.

On a lighter note, allow me to share some sweet moments from yesterday:

1) Filling up my gas tank for 16 cents per gallon cheaper than the gas station across the road.

2) Peanut M n M's - need I say more?

3) Finally getting a hair cut and color after having to cancel a few weeks ago due to ongoing sickness. (Mrs. B, your intuition and advice was just what I needed on what was a particularly indecisive day for me, the cough drop was really helpful too)
3) Coming home to a very tasty dinner - all made and ready to eat. (I'm in love with you Baby!)

4) Encouraging phone conversations with dear friends and my sweet mom.

5)American Idol - need I say more? (Yes, I'm one of those)


Stacey said...

Fun Wendi! I am so glad you started a blog!! Now I can see what's going on with you and you with me!!! Keep going, it's great to know how you really are feeling!

FordFamilyFun said...

I really miss our weekly get togethers. It has been a long time since we've had them, but I still miss them. Thank you for sharing your heart with us. It is easy to think that we are the only Mom's who feel this way. Although you face difficult issues with K, your faith is strong and your God is stronger. I will be praying for you.