I Am Thankful

Thanksgiving is a time to reflect on the many ways we are blessed. It is also the time of year we lost my sister to her battle with lupus. She was and still is a blessing to me, I'm thankful for the many lessons she taught me.

....hope. You remind me to find hope even when my physical pain seems unbearable.

...stubbornness. You where the most stubborn person I've known. Stubbornness can also be powerful in fighting for those you love.

...courage. You taught me to not be afraid of new opportunities. Forcing me to go to homecoming, to ride in the front of roller coasters. You taught me to find excitement in new things.

...love. It's unconditional.

....laughter. It's okay to laugh when your sick, it will actually make you feel better.

...do overs. When you make mistakes just start over. 

...time is short. Make the best of your life you don't know how much time you have. 

...strength. You wrote a paper about your little sister as your hero because she had strength she did not know she had. When the days are hard and the pain is too much I remember that I am someone who is strong and can continue to fight.

...faith. You shared Gods story of love and forgiveness with me. Reminding me that no matter when or where I need him, he's there and he loves me.

In the 18 years you were here, you made the best of your time. You left us all with a little piece of yourself, you made mistakes, you loved, you inspired. 

I am thankful. 

Right Plan, Right Now

 Sometimes I think I give up too easily. In the past few months God has taught me that because I said no doesn't mean I've given up.

I am totally a type A personality. I always have a plan. As a teenager I had my entire life figured out. Illness and life in general has a way of putting in quite the road block. And I've always thought if I say no it means I have given up. 

I am learning I did not give up. It just isn't the right plan, right now. 

I think about my college years. Forfeiting  scholarships, starting over every year. Honestly, I thought I was weak. Truthfully, I was fighting for my life. I had developed kidney disease, my first real Lupus flare. Although, in my mind I had given up...I hadn't followed the plan.

The truth was a hard pill to swallow. It meant my plan wasn't right, right now. I don't know if I will ever be able to return to school. But maybe I'm supposed to learn something in a different way at a different time...Or just an important life lesson.

This lesson has taken years to learn. But I have learned it now at the right time.

A time I really needed it. As most of you know this was our third attempt at adopting. And again we are at a roadblock. We are at peace that this moment is not the right time. Even though adopting is the right thing. 

The desire is so strong...our hearts hurt that two little boys will not be ours...and tears have been shed.

...but a peace has come over us. 

We will adopt.

Only when it's the right plan and the right now. 

         

Held In Our Hearts

I think of the children we've lost through miscarriage often. But I never thought how it would affect the two children we were blessed to raise.

She was my fourth pregnancy and she was only 6 months old when we suffered our last miscarriage. Never knowing whether she has sisters or more brothers, if they'd look more like her brother or herself. 

She loves them any way.

As we sit together and share tears of what could have been our family. She asked me can we name them. A question that showed me she didn't need to meet them to love them. That just like her dad and I there are empty places in her heart.

She is looking for a connection. Showing us how big her heart is.

Losing a pregnancy didn't only affect my husband or I. It affected our family. To think we’d be a family of nine. Today, we shed tears in rememberence for the five sweet babies our family holds in our hearts. 

***October is Pregnancy and Infancy Loss Awareness. 

***Pregnancy loss and complication is very common in Lupus. Patients are advised to not become pregnant unless their disease activity is under control.

Upset Plans

You never really know how much of a planner you are until your plans have been upset. I really thought I had a good plan. The problem was my timing is not God's timing. I had no clue the path I would end up on. And oh how I have fought it.

And now I am here wrestling with fear. That's how I've been feeling. I thought I knew that I was in God's hands but my actions have proven otherwise.

To be totally honest, I have allowed fear to take over my hope.

And all because what is happening in my life is not how or when I would have it happen.

I have spent the last few months wrestling with everything...my faith...God's will...all because I want it my way. 

I take my eyes away from Jesus because  the details don't make sense to me. I forget he knows the details that affect today and tomorrow.

A month ago we were hoping to be considered to adopt two precious children. But our path has been detoured by an amazing opportunity for our family to move closer to family and our doctors. Ten years ago I prayed for a job for my husband. I never thought God would answer when we had an opportunity to adopt.

The timing doesn't make sense to me. Adopting...Moving. How are we to do both?

So here I am, I have taken my eyes away from Jesus and placed them on the fear of the unknown. 

Fearing we will lose this opportunity to grow our family...Fearing once again it's not going to happen...Fearing I will have to be patient to wait for more children...Fearing I won't have the patience and give up.

So as we wait to know if we are a match for these children, our family is holding on to hope that seems imposible.  

I am surrendering my fear and holding on to hope because I believe in a God who moves mountains.

Holding on to hope because my God is with me even when I begin to doubt and look away long enough to begin to fear.

Holding on to hope even when I know the outcome is not when or what I may want because I know God has something even better planned. 

I will hope in the tomorrow God has planned because with God there really are no upset plans.

Do not fear, for I am with you; do not be afraid, for I am your God. I will strengthen you; I will help you; I will hold on to you with My righteous right hand. Isaiah 41:10 HCSB

Growth

It's been a whirlwind of change in our home. I've been rather distracted lately...Difficult descions have been made...and it's time for us all to do a little growing.

One of our changes is sending Sunny to high school. I have gone back and forth with the decision. Is she ready? Am I ready? Did I teach her enough? Will I be called every day because of sugar issues?

It came down to saying yes among all these fears. I never felt the desire or the need to homeschool through high school. Part of me wants them to never leave. Part of me wants them to start spreading their wings and seeing what is out in the world. It came down to me saying this is what is best for our family. I will not allow others opinions change how I feel or allow me to question my choices. I am not proud to admit...but I have spent too much time thinking about what others say about my decisions. 

Maybe I have grown up a bit. 

Just maybe the challenges God has allowed me to face has also allowed me to grow.

Growth in healthy friendships. I seek out wisdom from the friends I know will prayerfully give me advice. Advice where I will not be judged if I agree or disagree.

Growth as a mother. I am learning to value every moment, the good, the bad. Growing every day.

So as we watched her cross the street, my heart broke a little bit. But that little bit of brokenness is allowing something new to grow.

Stop Your Fighting

I love quiet. Unfortunately I have nights when the quietness brings every negative thought to my mind.....You're failing as a wife...How can YOU be an adoptive parent? Its been years since you began praying for this, where are your children?... What if her blood sugar drops while she's sleeping?...What if we can't pay all of our medical bills?...What if he doesn't know the plans have changed and freaks out?....Then I remember two simple words. 

Be.

Still. 

Be Still. Are you kidding me? I don't have time to be still. I have to figure this out. I have to find a way. I need to fight through this. I need to do this, I have to fix it all.

And then I remember...Only he can fix it all. God is showing me what being still looks like in my life.

Being still is being patient. I don't need to become discouraged when I hear other families finding placements. When we get the call then find out we are the back up plan. I have to remember he knows the perfect children for our family and in his time they will be placed with us.

Being still is love with grace and without unrealistic expectations. Marriage is not easy. It is hard dirty work. Marriage is choosing to love someone each day. Good or bad. If I only look to how innocent words may have stung or on things I expect but never expressed, I don't give my husband the grace and love he deserves. Worst of all a seed of bitterness begins to grow inside me. When I am still my heart softens and I begin to see this amazing man God has created.

Being still is hope. Hope I will be healed of Lupus. Finding the ability to turn my pain into worship and accepting my physical healing may not come until the day I see Jesus.  And Yes, there are moments of anger and sadness when I focus on the hard words of  I cannot ever say I am cured. But it does me no good to ponder those thoughts too long. Without being still my hope begins to fade. Hope that reminds me of the greater good God will work within me.

Being Still is acknowledging God created my family. Even if in society my children are labeled  as "special needs" I can look at the pictures of "normal" families fitting into "normal" society on Facebook with envy or I can choose to look at the boy who wants to spend all of his time at home where he feels safe. The boy who is special to me because I have the privilege to love him as he is.

Being still is most of all knowing that in all of the above circumstances God has fought for me. In the HCSB translation Psalm 46:10 is translated "Stop your fighting and know I am God". The comforting command Be Still (Stop your fighting) tells me God has it all taken care of. When illness, the hurts of living in a broken world, or allowing my negative thoughts start to take me down I can rely on His promise. 

My God has fought for me. 

For me.

He loves me and has fought for me. The battle has been won. I am worthy to be fought for. To me that is all I need to know to Be Still and let God have his victory.

"He makes wars cease throughout earth.

He shatters bows and cuts spears to pieces; He burns up the chariots.

Stop your fighting and know I am God,

exalted among the nations, exalted on the earth."  

Psalm 46:10 HCSB

Heals All My Diseases

  

How are you? I really don't like to answer this question. I often answer ok because I AM ok. I am ok because I have come to rest in the Psalm above. Yes, I do not feel well most days. My body often decides it will not function no matter how hard I try to make it. Honestly, I should answer I am great. I know God will heal all my diseases.

I just know the healing will come when I return to my Lord. When speaking with someone about Lupus, I always mention my sister. Most are always shocked to hear Lupus can be terminal. My sister Brandi, she was healed of her Lupus. In my weak moments, in all honesty, I am jealous. She no longer has fevers, pain, a body that does not function. And she can dance in the light of our Savior. I miss her. But losing her, when it seems like forever, is only temporary. Through her death I was made stronger. A gift. 

Each day whether my body is too weak to climb the steps into our home or strong enough to make a grocery trip without having to lean on a cart, my soul grows stronger. I am learning to live with a purpose. Learning, God wants to use me. Even if my hands and feet cannot be used for his purpose. He will use my heart, my mind, my soul. I am learning to give God my all in the way he created me to be beneficial in his great plan. 

And I will praise him all my days. 

He fills my life with good things. 

He surrounds me with love and tender mercies.

He will heal all my diseases. 

And until the time comes I will live my life with my whole heart, mind, and soul for his purpose.

Puzzle Piece

Question, pages and pages of questions, I check all the boxes that are part of our normal. I check the boxes because its time for answers and time to find the puzzle piece to connect with our son. Time to acknowledge our son is not the accepted normal in the world's society. 

In order to support and give him an opportunity to be comfortable in the worlds society, we've realized he needs to be acknowledged as who he is. It is not easy to acknowledge your child is not emotionally "normal". The idea of attending youth group and church terrifies him. Hands flap...tears flow...voice whines...it's too loud....they make fun of me...but he obeys and goes...our heart breaks.

Avoidance of playmates, he was shy. Avoidance of eye contact, he needs to learn manners. Arguing his answer is the correct one, he's rude. Falls down, he's clumsy. Obedient to anyone, he's a good kid.

The reality, his mind doesn't work as ours does. To him the idea of being around others isn't necessary, schedule is. He can't understand he can be wrong, sarcasm is true. Facial expressions don't mean a thing, his hurtful comments are just truth.

We accept our normal because this is God's will and not ours to question. He knows the grand plan and IT IS PERFECT. Even when we can't perceive it. 

Our normal now has another name to it....Aspergers.....high functioning Autism. A name that will allow us to understand and give him an opportunity to find moments of comfort in the world's society. The puzzle piece we can add to give him a better picture in life.

Tomorrow I Will Fight the Dog Over the Laundry

   

  

The dog is sleeping in the laundry. At least it hasn't been folded. It may never be folded. Newspapers on the couch, stuffing from dog toys cover the floor. And I am on the couch. I soooo want to clean it. I will rest tomorrow. This little lie has caught up with me. God has blessed me with a slow down mechanism as part of my Lupus since he knows me all to well. I have gone and gone maybe taking an afternoon here or there to rest. Last week the warnings were clear. When I've done too much my heart decides to slow me down. First racing then dropping to dangerously low rates. It's my bodies way of saying slow down. And if I don't listen. I tend to find myself being forced to rest. Flat on the ground....My face in my plate.....High school prom....Family dinners...It's never a fun time..When my body says I've had enough but my to do list says keep going. I argue when I should just listen. I've learned to listen. Ok, I listen most of the time...some of the time...I'm listening now. 

I forget how important it is to take care of myself. 

It is moments like this that reminds me how different living with a chronic illness is. How often I have to say no...bible study...taking trips with friends....just running errands during the day. I feel trapped in my own home. Forced to live a different life. I life I did not choose....but a life I must embrace. Our families normal...

A normal that has taught us to live life at a slower pace. Enjoying sunrises, sunsets, cloudy days. Reading books and playing games in bed. If I listen, life with chronic illnesses tells me what is important. How I spend my time....embracing rest because this is what God has planned for me today. He didn't plan for me to check everything off my to do list, my home to be perfectly clean. I will embrace that today I can offer reading together on the couch...tomorrow I can fight the dog over the laundry.

Stay Strong

This weather has been brutal, although beautiful.  For me, it is taking it's toll. I am exhausted...Sun + Snow...My new enemy. I really just want to rest. I tell myself tomorrow you can take the time. 

There is too much to be done. Therapy, lessons, doctor appointments, dishes, laundry, endless picking up ..day .. after ..day. Never enough time.  The 20 minutes I took with God in the morning isn't enough. 

I find myself in tears after another run to the store for what I've forgotten. My body is exhausted, joints ache, rashes from sun exposure....but there is still more to do, running through my mind. My mind is the most exhausted of all.  I want to say the dishes and laundry can wait. I just want to sit, not make any decisions, escape for a few minutes in a book without having to get up, answer an email. A verse comes to mind -

but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. (Isaiah 40:31 ESV)

Wait..

Stop..

Remember..

Who I believe in...

A God who offers me wisdom and discernment for those to do lists, patience, humility, strength to carry on.

I return to a disheveled home. And IT IS OK. I sit next to my husband, where I belong right now. Open my book, I realize I'm not sure where I left off, should of used a book mark. But the almost 14 year old has placed one there for me. A simple index card, with words God knew I needed to hear. Stay Strong.

Surrender

It's been a long week. It started out well but by Wednesday I gave in. I just wanted an escape. The burdens of dealing with a Type 1 Diabetic child and my Lupus just wore me down. Unfortunately I turned inward instead of upwards. 

For I do not do the good that I want to do, but I practice the evil that I do not want to do. Romans 7:19 HCSB

These words played in my head every time I pushed the next episode button. I knew I just needed to turn back to God, open his word. It will heal...step out of the darkness and into the light of his mercy. 

In the darkness I focus on the mistakes I've made. Thinking I am doing so well to stop my meds, that because I don't feel bad I don't need them. Not wearing sunblock or a hat....my body reminds me these meds are vital...joints stop doing what I ask, fevers and rashes start appearing. Yes. I know what I am to do. The worst part? What example am I setting for the Type 1. Her A1c has hit 13.4. Dangerously high. Her pump is tuned, insulin good, sites in correctly. It all comes down to human error. Did you check your sugar? Did you bolus? Constantly we ask. Attitude and tempers flare. 

Different diseases. Same issue. 

We both know what we ought to do and we both think we've got it under control...that we can do it alone...we don't need any help. That is the lie you can begin to believe when you face an illness day after day. 

It is a lie that will isolate and send you into darkness. We were not meant to be alone, we were meant to surrender. Surrender control, fears of mistakes. Surrender to grace and mercy. In surrendering, I find hope.

Because of the Lord ’s faithful love we do not perish, for His mercies never end. They are new every morning; great is Your faithfulness! Lamentations 3:22, 23 HCSB