Monday, May 27, 2013

Quotables

Nothing special, just some quotes that I love.
Simon is sick today, so I'm enjoying time to 
be a little creative.
We will have to go have his hemoglobin checked tomorrow
to see if his fever lowered it faster than usual.
We may be headed back for another transfusion...








Thursday, May 9, 2013

The Medical Abyss

We are stuck in the medical abyss of questionable diagnosis. As a mom I am struggling as I watch Simon deteriorate each week until its time for another blood transfusion. His eyes get a little more yellow, he wants to just sit on the couch, he gets really cold, he gets cranky.
I like answers.
I like solid evidence that I can see and follow.
I like knowledge and books and reading to understand things better.

I don't like doctors not having answers.
I don't like two separate and very different diagnosis.
I don't like the thought of bone marrow tests.
I don't like the unknown.

But that is where we are today.
We are in the belly of the unknown with no great outcomes.
If you are interested in the great debate of Simons medical mystery feel free to ask questions or look up Thalassemia B major and Diamond Blackfan Anemia.
I've been in close contact with both foundations and am thrilled to find that either way we have an amazing support team!

In the middle of all the phone calls, appointments, blood draws and hospital visits is one of the bravest boys I know, our Simon.  He is amazing.

These days he is discovering freedom and the ups and downs of it.
He has tried to ride a bike for the first time and discovered that falling down means getting hurt.
And that getting hurt means mom comes running.
And that mom kisses bruises and bandages cuts...even the fake, made-up ones.
He has tried ice cream and discovered that too much leads to tummy aches.
And that mom is worth listening to.
He has learned that when he cries at night someone comes to comfort him.
He has learned that tantrums don't get you out of time outs.
He has planted flowers and is learning that beauty is worth waiting for in life.
He has learned to walk up and down the stairs and that hard work has benefits.
He has learned that he can color a picture and that mommy and daddy will proudly post it on the fridge.
He has learned that someone in his life is crazy, over the top, smitten with him.
He has learned that he is part of a family.



He makes me furious one moment and rolling with laughter the next.  In the last 5 weeks I've found my way to falling in love with this boy.  Some days are immensely difficult and some days are immeasurably, beautifully filled with joy.

I want answers for all of Simons tomorrow's and I'm working hard to get there, but for now I'm so thankful to be a part of Simons today.





Friday, May 3, 2013

An open letter to adoptive parents

I have been guiding my children through the lessons of life that adoption is bringing to our family and I have been hearing the echoes of my Savior speaking to me in those lessons as well. One of my children really struggles with mercy and grace. Everything is black and white, right and wrong and this one will fight to the bitter end over the smallest thing.

As I sit there and pour out wisdom I can't help but feel a check in my spirit. I have pounded two lessons recently and here they are. First, choose your battles wisely and second be gracious enough to allow others to make mistakes. Life is a long road and we are all often wrong even when we are doggone positive that we are right. So, weigh the balances and choose to take your stand on worthy ground.  Whether or not something is green or blue is not worthy ground. I took out my Bible and said that truth was worthy ground.

God often allows us to make mistakes and learn our lessons from our consequences. As a mom sometimes I allow my kids to do things that I know will not end in smiles because I know that one more nagging comment won't mean a thing but a scratch on the arm might! I allow them to be wrong sometimes. I allow them to learn on their own...sometimes.

Jesus set forth His example when He dined with sinners and had awkward conversations with strange women by the wells. I doubt that they all had great manners or knew all the right things to say. Have you ever sat with the oppressed or beggars? They don't usually smell great and can say the craziest, most offensive things! Yet, He was a gracious guest in their homes. He didn't berate the woman at the well for all of her mistakes. He spoke the truth with grace.

Here is where the adoption community has been on my heart. We are a unique group of people with amazing strengths. We are compassionate, sensitive, loving and steadfast. We have to be or else we will never be able to do this whole adoption thing. But with those great strengths come great weaknesses. We are overly sensitive, over zealous and down right stubborn.

We choose this road for many reasons. But we often fail to give grace to others that don't understand our choices. We write post after post about what not to say to us and what not to do and what to do. Can I propose that we do exactly as I instruct my own kids? Can we choose our battles wisely? Can we be gracious enough to let someone be wrong and allow God to work in their hearts? I fear sometimes we are so loud that the gentle voice of God is drowned by our passionate cries for justice. I fear we as a community have become prickly bushes that others are afraid to go near. They are afraid of saying the wrong thing so they simply say nothing and we lose our chance to educate.

There is a time and a place for us to stand our ground, but I'm going to go out on a limb and say that commenting on our child's "different" hair or skin is probably not it. Becoming angry when someone asks who your child's father is won't educate anyone and certainly won't leave a good taste in their minds for our community. Be gracious. Tell them the story, tell the tenth person that day about your adoption journey. Let them comment on your child's hair or skin and tell them how much you love that part of your child. When they ignorantly ask questions that spark our stubborn streak take a step back and remember that we are all ignorant in some way. There are things in this life that we don't understand too! So answer with grace and kindness, assume the best. There really are not that many people that are cruel on purpose.

When they are dead wrong and offensive speak the truth in love and walk away graciously. We live in a strange world within the adoption community and we sometimes forget that the rest of the world is not out to get us. They simply don't understand, and that is okay. We need to be okay with that. We need to listen to their rude questions patiently. We need to let them stare at our strange family while they assume that the Middle Chinese son had a different baby daddy from the other three kids. We need to break the ice and laugh out loud at their silly questions. We need to tell them how we traveled the world and gave up our lives to find our children and that our marriages are in fact still blossoming and our blended family is not the result of a straying spouse!!

Stay the course, laugh a little more often, take your battle stance on worthy ground and be gracious.

Passionately, sensitively, lovingly yours,
Another crazy adoptive momma.