How are you?

How are you? It's a question asked of me all the time. I'm fortunate enough that most are genuine and want to know how we are.

I’ve wondered so many times how to write this post. If I should write this post and if I should then what do I say? How do I encourage others to continue to adopt children with chronic needs and still be honest with those around me?

I’m not sure I have the answer to those questions. I’m not sure of most things these days. But I want to share with you my heart.

We adopted a little boy with Thalassemia, specifically beta major. It is listed as a chronic, life-threatening illness. It’s involved and complicated. Even with a biology background I get lost in the medical files and terms and medical trials and gene therapy.

I knew life would change. I knew that in my head, but it’s always different than living it day in and day out.  Let me be completely honest for a minute. It’s harder than I could have imagined to live this out in life. It’s beyond exhausting.

I’ve traded playdates for doctor’s appointments.

I’ve traded girl’s nights out for a good nights rest after a long day at the hospital.

I’ve traded my relaxing mornings or letting kids fend for themselves for getting up to make sure medicine is mixed properly, measured and taken in a timely manner.

Every  two weeks or so we sit in the hospital. This does not mean that I sit and crochet while the blood drips into my son’s veins and keeps him alive. It means I get up and get a slushy for the tenth time to keep him hydrated. It means I coax him to sleep and switch my Pandora to Chinese music to soothe him after the Benadryl gives him anxiety. I watch his big, scared eyes stare into me and I remind him that I will not leave him and he can fall asleep. It means that I wheel his IV cart into the bathroom with him and try not to die in the mess of cords while helping him since an entire arm is out of commission. It means I watch the movie Cars five times in one day.  It means I debate with doctors and nurses on how to treat this illness. It means I go home after 6-7 hours more tired than I can describe. And dinner still needs to be cooked and kids needs to go to bed.

We miss a lot more church these days. When your doctor says a simple virus may cause aplastic crisis you tend to stay home if you hear of colds flying around the kids at church.  You try not to worry when the kid behind you coughs in your face. 

Life changed faster than I thought it would. My family is different than the average family. Our needs are different.

I finally came through the fog of the adoption crisis, and the medical jargon. But I’m different. I feel the change. My life has been touched with the threat of the unknown. Friends talk to me about potty training and recipes and I think I tend to stare into the abyss trying to remember how to talk about normal things. How do I get my brain to stop computing and storing information about phenotyping and blood matching? How do I stop being the advocate, the momma bear, and go back to being the friend? I get lost in my roles.

I’ll never forget the day the Make-a-wish packet arrived. Life slammed me in the face. I was so happy for my son, but I held him closely that night and wiped silent tears with my sleeve. The seriousness wasn’t in my imagination. It was real. My boy was ill.

The day the doctor called us in to meet with us just to show us a chart of how ill my son is will be forever seared in my memory.

My kids are trying to understand that they will outlive their brother. My kids ask how long their brother will live. 

They are struggling to know how to talk to him appropriately about life in general.  Do they talk to him about having grandkids? When he says he’ll live to 100 they look at me with big eyes and I shake my head telling them to just let him talk. My oldest knows what it means that her brother was granted a wish. My youngest cries because he can’t have a wish. And I pray and thank God in my heart that he won’t. And I wonder is that selfish?

I am often asked what his life expectancy is. I’m a mother and I talk often about my son’s life expectancy. Let that soak in for a moment.  I talk about my son’s possible death frequently. I talk of possibilities and chances for life. Let that soak in.  After all at the end of the day I’m just a mom.

I say to them that some are living to 60 these days with a big smile on my face. I talk to them about the amazing advances being made.  I don’t mention that a 30 year old and a 40 year old in my circle just passed away.  I don’t mention that his medicine is currently not working. And then I go home and cry because I realize that if even he lives to 60 I’ll still be around.  I deal with the constant reality that I will more than likely bury my own son.  

Living with chronic illness means I laugh and I watch my son run and giggle and in the middle of the laugh my heart catches and I remember to hold these memories in my heart. I remember to thank God for today, for this carefree moment.

So, how am I? I'm different and that's okay. God called me to this road and we walk it with faith. Would I recommend this life? Absolutely. With every ounce of my being, I answer yes.

Maybe God won’t call you to it. Maybe He won’t ask this of you. Maybe He will ask you to travel a different road. But if this is the road He asks you to walk. Walk it, with great faith. Faith that knows God can move mountains. Faith that knows His way is best, always.

No regrets. After all I’m just a mother loving her son. Is it different because he is adopted?  No, no way, my heart hurts just as much. But he is my son and I have found a way to love this new way of life, because it brings me him.

His Bride

I was brushing the tangles out of her hair.

It was Sunday morning and we were rushed, as usual.

But then the Lord impressed upon my heart this moment 

of time together. Time that passes so quickly.

So, we talked while I brushed her hair.

We talked about breakfast and life.

We began talking about worship.

I was explaining to her how special our time of worship is to us.

I was teaching her how we are the bride of Christ

and that  it is the time that we come before Him

and offer Him ourselves.

It is our time to place our lives on the altar before our Groom.

I told her that we know His love and feel His love reigning over us.

Because we are His Bride

and every Bride knows the love of her Groom

Love is beautiful.

We feel it. We know it. We soak in the glory of love.

Then she turned to me and asked me with kindness in her voice 

if he was part of Christ's bride.

Moments of teaching her become His moments of teaching me.

She knows his faults. She knows the pain he can cause.

Her concern was for him.

God spoke His truth into my heart.

I turned to her and spoke His simple, yet profound truth.

No, he is not yet part of His bride, but he will be.

He.will.be.

She asked me how I knew.

I answered that my God was wooing him.

And when he chooses to woo His bride 

she always comes,

Always.

His love is too beautiful to resist.

His power is in His love.

God used a small moment to remind me of what is really going on here.

Despite trials, and fits and moments of darkness

His light is shining down on this home

through this boy,

my son.

I am blessed to be a witness.

Update

I know it has been a while since I have updated all of you. It's been a very busy summer to say the least. 

I'll update you first on Simon's health. He is doing okay. I say okay because it hasn't been terrible, but it hasn't been great either. Simon remains a mystery when it comes to transfusing him. He is not predictable in the least to be able to estimate when he needs another transfusion. I'm hoping that over time it will become more predictable. It's just nice to have a schedule to stick to and plan things. He is transfused anywhere from three weeks to five weeks right now. His liver is more loaded with iron than we had hoped and we are increasing his medication to reverse that damage. The good news is that it is reversible. The bad news is that the medication itself is dangerous. Please, continue to pray for wisdom in these areas.

Now, how have we been adjusting as a family? Well, it's hard, really hard. Most days are a struggle. Please know that we love, love, love this boy, but I am faced daily with the truth that he has been raised not by loving hands in the setting of a family, but in an institution that did not have the manpower to teach my little man how to live in a family.

There are lots of areas to grow. Sometimes I watch him and think, "what in the world?" And then I remember. I remember He had no teacher. He had no mother teaching him not to lick his plate after dinner...or his hand and arms. He had no mother telling him not to use her shirt to clean out his ears. Seriously. Things that I take for granted as basic social skills are not so basic when nobody has been teaching them to you. If I'm really honest with you I would have to tell you that most days it drives me bonkers. BONKERS.

He also had no father to teach him how to handle arguments with words not fists. He happens to be excellent with his fists, or legs, or fingernails. His survival skills are topnotch. Survival is natural and it served him well before he came into a family. But now he is here in our family and that transition is, well, still a transition.

Mostly, I've learned how desperately I need my Savior. Days are exhausting, nights aren't long enough and I can dig as deep as my heart will let me but it will still not be enough. I wake up tired and I crawl into bed at night.

I've learned that I have no concept of mercy. Mercy that chooses not to give punishment that is deserved. Mercy that beckons me to my Savior's arms at the end of another failed day. Mercy that whispers my name and tells me to wrap my arms around a boy that hurts those around him. Mercy that tells me to withdraw from the fight. Mercy that gives and never takes.

But at the end of the day I cling to those words written long ago, "I trust in the name of the Lord my God." He has planned this path for us and He is teaching us to be more like His son. 

And I know that in the end you will find us standing upright. Because the strength of my God will uphold us.

You will find a young boy slipping in between his sister and brothers and loving on them. You will see him rising up with the strength of the God of his father.

You will find us laid out on this altar of life. You will find mercy.

Psalm 20

May the Lord answer you in the day of trouble!
    May the name of the God of Jacob protect you!
2 May he send you help from the sanctuary
    and give you support from Zion!
3 May he remember all your offerings
    and regard with favor your burnt sacrifices! Selah

4 May he grant you your heart's desire
    and fulfill all your plans!
5 May we shout for joy over your salvation,
    and in the name of our God set up our banners!
May the Lord fulfill all your petitions!

6 Now I know that the Lord saves his anointed;
    he will answer him from his holy heaven
    with the saving might of his right hand.
7 Some trust in chariots and some in horses,
    but we trust in the name of the Lord our God.
8 They collapse and fall,
    but we rise and stand upright.

Honor

Simon is adorable, and a handful. We absolutely adore him.

Life is really hard and really awesome all at the same time.

When people ask how we are doing I'm not sure how to answer. The truth is complicated. We are doing well. We have all fallen in love with Simon. His brothers and sister adore him and so do we. He is doing well too. But I would say my version of "doing well" and yours may not be the same. For instance, Simon now tattles nonstop, non.stop. BUT this is "doing well." It means he is learning that someone will fight for him and that he does not need to fight for himself. Which believe me is a very good thing indeed.

It's an exhausting kind of growth we are going through. We are being changed and transformed individually and as a family. Change is never easy. It's hard and painful, but necessary. We are in the middle of the furnace of redemption, but we are not alone. God is surrounding us with His love. 

Am I tired? You betcha. 

Do I handle every day well? Um, no.  

Do I love every minute? No, no I do not. Some minutes are dreadful, truly dreadful.

There are some things I can't do yet. I can't go on playdates. Heck, I can't go on real dates. 

Real dates, the kind where your husband is gazing into your eyes OR snoring loudly next to you in the theater, they are just not in our realm of possibility right now. Hopefully soon they will be. 

Because, guys, this face owns my heart.

I cannot plan activites. I often can't head out to friends houses or girls nights out. My life is different right now and that's okay.

It's okay, truly. I don't resent it. Right now I have a little boy who needs me desperately. He needs to know that I will never leave him, that mommy and daddy are here for good. He needs to know that he can trust my decisions for him. 

It is tiring, but right now I am honored to walk beside him on this road. 

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...

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.

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.