The weeds............
A few days ago, Parklen and I took a day trip to the Children's hospital. It was a super long day, over 8 hours of driving and many hours in between of crazy appointments.....none of which went as planned. It has become clear to me, after over three years of being a "regular" at a hospital....that when a Dr. says "we have a plan" it really just means...."we talked a little about this....were thinking its a possibility, but more than likely we will change our minds with in the next five minutes...."
Seriously, the term "practicing" medicine, is a true statement...there is no definite. This is even more true when your son has a rare disease, of which very little trial and error have been compiled.
So we traveled down....with a plan in mind.... and we left, with a new one. Neither which are better than the other....just different.
I will tell you all something right now......Parklen is more than loved by his doctors and nurses. Its a huge hospital so there are new faces each time we go, however there is the core of his team that remains the same. When we were getting ready to leave at the end of the day, each one of his care givers were in tears. Its not because Parklen is too sick, its not because he is much better.....its because Parklen has a way of making you love him.....a way of touching your heart. It comes natural to him, and I believe it is a gift that God blessed him with. He can turn a situation around with just a hug.... Whether you are placing a needle in his port or checking the size of his Spleen....this kid looks at you, or hugs you and makes you feel.......wonderful.
Emotions were flying around like crazy in the exam room.....the realization that Parklen is going to be four years old in just a few short weeks, invoked tears. It seems like just yesterday that we started this fight, then again, when you pause and think back it seems like ten years. We are just all so pleased of this tiny human's presence.... We have managed to gain control over a lot of his symptoms..... and what we haven't been able to control yet, we are working towards. We have watched a flourish of personality that we were not sure we would see......
Parklen was given a gift....a toy....for being a big boy during his port flush....Actually, each time we visit the hospital, we leave with many treasures. At every turn, someone is offering your child....something. The thing with Parklen, he wont accept one gift, unless they will give him another for his brother. He says each time, "Can I have one for Paysen?" and usually.....they dish out two goodies.
This was the first trip in HISTORY, when Parklen gladly walked to the car on his own.
We stayed a couple nights with my grandma.......the boys loved it. Nights away from home usually mean some nice snuggle nights with Mama....or dad if he's there. Parklen bunked up with me on the hide-a-bed the first night... When he sleeps with me, he strokes my hair and cheek simultaneously..until he drifts to sleep, honestly this is where most of my acne problems come from.....I'm sure. But its worth it. I don't care what any parenting book, or advice given against sleeping with your kids says....every now and then it is a must. There is, no other feeling....in the world of parenting that compares with the one you get, falling asleep in a cuddled hug with your baby..... Both Devan and I agree..... we keep "our" space to ourselves.....but every now and then we declare a sleepover night and all four of us will huddle in...... One day soon, it will be hard to get a hug or kiss out of my little boys....I'm sure that one day soon they may be "too cool" for lovin up on their mama......and I don't wanna miss out on those times now.......
As we drove home from the hospital.....I felt a little despair.....two more trips ahead soon, and a surgery in each of them......As the tears were beginning to well I heard Parklen's little voice exclaim..."Mom, look at the field of BEAUTIFUL flowers......" I turned to see an empty lot, in it.....only dandelions..... and I thought to myself....."Try to find the beauty within the weeds......."
Seriously, the term "practicing" medicine, is a true statement...there is no definite. This is even more true when your son has a rare disease, of which very little trial and error have been compiled.
So we traveled down....with a plan in mind.... and we left, with a new one. Neither which are better than the other....just different.
I will tell you all something right now......Parklen is more than loved by his doctors and nurses. Its a huge hospital so there are new faces each time we go, however there is the core of his team that remains the same. When we were getting ready to leave at the end of the day, each one of his care givers were in tears. Its not because Parklen is too sick, its not because he is much better.....its because Parklen has a way of making you love him.....a way of touching your heart. It comes natural to him, and I believe it is a gift that God blessed him with. He can turn a situation around with just a hug.... Whether you are placing a needle in his port or checking the size of his Spleen....this kid looks at you, or hugs you and makes you feel.......wonderful.
Emotions were flying around like crazy in the exam room.....the realization that Parklen is going to be four years old in just a few short weeks, invoked tears. It seems like just yesterday that we started this fight, then again, when you pause and think back it seems like ten years. We are just all so pleased of this tiny human's presence.... We have managed to gain control over a lot of his symptoms..... and what we haven't been able to control yet, we are working towards. We have watched a flourish of personality that we were not sure we would see......
Parklen was given a gift....a toy....for being a big boy during his port flush....Actually, each time we visit the hospital, we leave with many treasures. At every turn, someone is offering your child....something. The thing with Parklen, he wont accept one gift, unless they will give him another for his brother. He says each time, "Can I have one for Paysen?" and usually.....they dish out two goodies.
This was the first trip in HISTORY, when Parklen gladly walked to the car on his own.
We stayed a couple nights with my grandma.......the boys loved it. Nights away from home usually mean some nice snuggle nights with Mama....or dad if he's there. Parklen bunked up with me on the hide-a-bed the first night... When he sleeps with me, he strokes my hair and cheek simultaneously..until he drifts to sleep, honestly this is where most of my acne problems come from.....I'm sure. But its worth it. I don't care what any parenting book, or advice given against sleeping with your kids says....every now and then it is a must. There is, no other feeling....in the world of parenting that compares with the one you get, falling asleep in a cuddled hug with your baby..... Both Devan and I agree..... we keep "our" space to ourselves.....but every now and then we declare a sleepover night and all four of us will huddle in...... One day soon, it will be hard to get a hug or kiss out of my little boys....I'm sure that one day soon they may be "too cool" for lovin up on their mama......and I don't wanna miss out on those times now.......
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