A Diagnosis Changed Everything—Our Adoption Story Part 1

In honor of National Adoption Month, my friend at Rich Faith Rising is sharing real life adoption stories. I was honored to share our story. Be sure to hop over to Rich Faith Rising to read inspirational adoption stories.

Oh, I was certain I was ready to be a parent. I began babysitting as soon as the neighbors allowed me to watch their children. I had worked at daycares and preschools. I had my own classroom in a public school for 6 years at that point. I was ready!

Oh, the naivety. Oh, the denial. Oh, the trust from the Father!

Shortly after getting married, my husband and I learned that it would be incredibly risky for me to get pregnant due to an ultra-rare blood disease I have called, aHUS (atypical Hemolytic Uremic Syndrome).

I wasn’t very surprised that the doctor strongly suggested considering other methods to become parents, but it still felt very final and heartbreaking all at the same time.

I wasn’t raised to give up, so I immediately began considering different possibilities. Surrogacy, adoption, fostering? My husband wasn’t ready yet. He needed time to process that our story was not going to be the typical story of getting married, soon after getting pregnant, and then having babies.

It didn’t take long though and after about a month he was ready to talk about it again. I can remember we were driving home from our one year wedding anniversary vacation, a road trip to Glacier National Park in Montana. We were almost home and I said, “Just think a birth mom could be pregnant right now with our baby!” Little did we know, she was!

Through divine intervention we learned that a good friend of ours had an uncle that was a well-known adoption attorney in Seattle. We were told we could have a free consultation appointment with him. We wrote down all of our questions and went to meet him. He explained the differences between independent adoption and adopting through an agency.

My husband would say I have always had too much energy and focus so the independent route sounded perfect for us because it would keep me busy! We would create our own website, business cards, posters, and profile with a photo album to get the word out to birth moms that we were ready to adopt.

We completed our home study with a social worker and on December 23rd 2004, we were all signed off and ready to fully commence our search. Everyday I tried to leave a business card someplace with our contact information. We received several calls from birth moms considering placing their unborn babies for adoption. Each time my hopes soared! One birth mom even told us we were the ones she had chosen, only to never hear from her again. I am not going to lie, this was devastating. And not proudly, I instantly began to doubt God’s plans for us.

After that fail, it was literally 2 weeks later we learned about a lovely birth mom that wanted to meet us that coming weekend. We learned that their had been drug use during the pregnancy. We also learned that the birth mom had a previous child two years prior that had many problems at birth as well as a definite birth mark. We had said to ourselves that due to my health condition, we would not be adopting a special needs child and this included any babies who were impacted by drugs and alcohol. So why were we both drawn to this unborn baby immediately? Because she was to be ours! We went to meet the birth mom and one week later, less than 5 months after completing our home study, our baby was born!

She was perfect. The nurses gave her a 10 on the Apgar test and claimed they never do that! But this one was perfect. My husband and I could not take our eyes off her. We stared at her in the hospital. We took turns staring at her on the drive home. And, then we stared at her once we got her home.

This perfect baby of ours cried a lot. There was little that consoled her except getting out of the house and moving aorund. She loved being in the front pack and being on the move. She absolutely would not sleep without cuddling, swaddling, and rocking for hours. She was so unlike my friend’s baby whom I had taken care of for months. My friend’s baby would sleep any where. The car, the couch, the stroller, the floor! Literally anywhere. My baby would not sleep. She could not shut out the world.

Looking back, I was in denial. She was very healthy. She was born full-term. All of her fingers, toes, and organs were fully developed. But, this inability to self-soothe and prolonged crying was not normal. Looking back, I wish we had sought help from a doctor who specialized in adoption. I wish I had been able to look at her and trust that God would help her and us and not just deny the problems.

But, God is so very faithful.

Little by little, as we’ve grown in our walk with the Lord, we’ve been able to look more humbly at our need for help. We’ve been able to accept our daughter’s imperfections as well as our own. The Lord continually shows us that we are the perfect parents for our daughter and she is the perfect child for us.

Nothing has grown my faith and trust in the Father and nothing has yielded fruit as much as parenting my children has.

What I Learned in September

Psalm 25:4-5, Make me to know your ways, O Lord; teach me your paths. Lead me in your truth and teach me, for you are the God of my salvation; for you I wait all the day long.

Sept Path

Here we are wrapping up September. This is year 3 of homeschooling for our family and it’s been the smoothest transition thus far. I attribute it to several things. One being that we continued some schoolwork all summer, but never missed anything fun that came up. Two being that it’s year 3 and in my experience year 3 is like a magic year. When I was a public school teacher, I found that year 3 of teaching the same grade level or same curriculum really finally came together for me. And, three, many of the changes we have made to handling discipline in our family, have brought about greater peace for us all. Amen to all of the above!

My Reading this Past Month

  • Goliath Must Fall by Louie Giglio
  • When Parenting Isn’t Perfect by Jim Daly
  • Hinds’ Feet on High Places by Hannah Hurnard (I try to read this once a year!)

Our Reading this Past Month

  • The Borrowers by Mary Norton
  • What to do When It’s Not Fair by Jacqueline Toner
  • What to do When Mistakes Make You Quake by Jacqueline Toner
  • Story of the World Volume 1 by Susan Wise Bauer

Back to school 2017

1-2-3 Magic (123 Magic)

A very wise counselor shared with me the idea of utilizing the 1-2-3 Magic approach for stopping negative behaviors in my children. Think of any lower level behavior you want to stop: arguing, whining, badgering, and complaining, etc. There are many short youtube videos you can watch to learn more about this approach.

Here is how we are using it and finding it successful in our family:

First I set up the plan with the kids. I explained to the kids that we have been allowing behaviors such as arguing and complaining to ruin perfectly good days for us. We want to deal with the behaviors in a quicker way so that we can get back toward whatever God has called us to for that day. I told them that if they argue (complain, whine, badger), I will say, “That’s 1” and hold up 1 finger. They have a choice to make. Stop or continue. If they continue, I will say, “That’s 2” and hold up 2 fingers. If they choose to continue, I will say, “That’s 3” hold up 3 fingers and say (as unemotionally as possible), “It’s time for a break.” I will designate a spot for a break and tell them I will let them know when break is over (5-10) minutes.

After the first explanation of this plan, one little darling almost immediately thought she would test it out! Okay, here we go! Help me, Lord!

Darling child, “Can I have a snack?”

Mom, “No, it’s 30 minutes until dinner.”

Sweet, darling child, “But, I am HUNGRY. I haven’t eaten for 10 minutes! Why can’t I have a snack?”

Mom, “It’s 30 minutes until dinner. And, that’s 1,” holding up 1 finger.

Dear, sweet, darling child, “But, I am so hungry! Why can’t you tell me why?”

Mom, “That’s 2,” holding up 2 fingers.

Lovely, dear, sweet, darling, child, “Oh great! So you can’t even tell me why!? I just want a snack!”

Mom, “That’s 3, time for a break. Please go sit on the stairs. I will tell you when break is over.”

Precious, lovely, dear, sweet, darling, child, “Why did you have to talk to that counselor!” stomping off to the stairs.

I am not worrying about the behavior on the way to the stairs because my goal is to quickly and unemotionally stop the badgering and to reset. We are doing that by taking a break.

I set a timer for 10 minutes and then call to the child, “Break is over.” I wasn’t sure what to expect, but the child returned in a pleasant mood, ready to find something to do until dinner.

Flash forward to the next morning. Darling child, “Can I make pancakes for breakfast?”

Mom, “That sounds good, but we have to leave in one hour so there just isn’t time today.”

Sweet, darling child, “But, why can’t I make pancakes?”

Mom, “We are leaving soon. And, that’s 1,” holding up 1 finger

Child sulks off grumbling something under her breath, all the while developing self-control.  We move on with our day.

For more serious infractions such as physically hurting someone, damaging property, or aggression, you go straight to 3 and the child takes a break. Usually a more serious infraction also involves some sort of restitution in our house…fixing what they broke, mending the relationship, doing something physical to get the aggressive behavior out appropriately.

Be Your Own Health Advocate

At age 25, when I first became ill with an ultra rare disease, aHUS (atypical Hemolytic Uremic Syndrome), doctors had little idea of what was going on or what to do about it. And, I didn’t know that when a doctor said, “Let’s try XYZ to treat you,” I should say, “Why? Explain this to me.”

I didn’t realize the doctor was not my boss. The doctor is not all-knowing. And my life is not in the doctor’s hands.

In a healthy patient/doctor relationship, the patient is free to ask questions, seek clarification, share about their own research, and discuss concerns. If a doctor does not accept this from you as the patient, you should strongly consider finding a different doctor.

I have had a few wonderful doctors over the years. Besides accepting questions and thoroughly listening to me, the wonderful ones are those that admit when they don’t know something and then they seek to learn.

What about you? What did you learn this month? Is that a tough question to answer? Don’t worry! God has an answer for that. James, 1:5 says, If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him.

Need wisdom? Need to learn something? Need to see a breakthrough in a certain situation in your life? Need greater understanding?

ASK GOD, the one who gives it to you liberally!

 

 

Awareness

September 24th may or may not hold meaning for you. For me, it signifies a day of awareness. A day or remembering the 12 years of my life with no definitive diagnosis for the cause of my failing kidneys, high blood pressure, low energy, and strange seemingly unexplainable clotting problems.

September 24th is aHUS Awareness Day. aHUS stands for atypical Hemolytic Uremic Syndrome. It is a disease where small blood clots form in tiny blood vessels throughout the body.

aHUS awareness 2017

I became ill  in 2001. Because aHUS is an ultra rare disease, meaning in the United States, fewer than 200,000 people are affected, it was very difficult for me to receive a diagnosis.

Finally around 2013, I received proper testing and thus a definitive diagnosis of aHUS was made. About 2 years after that, I began receiving the life saving treatment (not cure), Soliris, as a bi-weekly infusion.

Last week, I was fortunate enough to attend my first conference through the a HUS Foundation. It was a wonderful time of connecting with other patients and their families, learning about the disease and treatment from an experienced doctor, sharing stories of hope, and encouraging one another. My prayer was that God would use me to encourage even just one other person and that I would learn something new.

God didn’t waste any time at all…He never does! The very first family we met at the conference was a lovely family of a little 4 year old boy who had been diagnosed at 9 months of age. Simply introducing myself as the patient and mentioning that I first became ill back in 2001 was enough to cause their jaws to drop and say without filter, “And you are still here! Wow!” There you go, God, encouraging even just one person!

Many inquired about why I had never been to a conference before. With how much I enjoyed the conference, sitting amongst those who understand my life with aHUS, I had to really think…why had I never attended a conference before?

A big reason was probably all of the years of not knowing for sure whether or not I had aHUS. Why pursue learning about a disease I may not have?

Another reason was I imagined the conference being sad and depressing. I imagined sitting around listening to sad stories of suffering from people stuck in this disease. What I found was the opposite. I saw life! Children living their lives as children with aHUS: playing, laughing, learning, growing. Adults with families and careers living their lives as warriors. Family members spreading the word about diagnosis and treatment, learning all they can, fundraising, raising awareness.

Fullerton conference

As a group, we even attended Disneyland, the happiest place on earth! All of us connected by the same disease, laughing, enjoying our lives!

Awareness provides answers, diagnosis, and treatment. Take a minute to check out the aHUS Foundation website: aHUS Foundation

Here is a link to my story which I shared on Facebook: Facebook Live

Thank you for reading my story!

In Discouragement, Consider Him

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,  fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross,scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12: 1-3

Every two weeks, I go through the same routine. Get up early. Wake up my youngest daughter. Pack a bag with some snacks and water. Load up some school work and something fun for Abby to do after completing school work. Head to an infusion center a few miles from my house to receive a life-saving medication, which is providing more dialysis-free/kidney transplant-free time for me. More about my life with aHUS here,  here and here.

Today was the day. Discouragement flooded in. Maybe it was because it was Wednesday and my usual Tuesday routine was disrupted due to a conflict at the infusion center. Maybe it was the sun beckoning me to be outside. Maybe it was my daughter’s groans expressing her complaints about getting up early with me. Maybe it was the bruise on my forearm from the previous IV. Or, maybe it was just the enemy’s tactic that morning to pull me down.

IV pic

What I know is that discouragement gets me to focus on none other than me. I am inward focused, thinking about, meditating on, and dwelling on my circumstances. Discouragement gets me stuck in my expectations and hopes and how things might have been. Discouragement leaves me thinking things like, “I don’t deserve this”.

But, the final sentence in the Hebrews passage above is verse 3 in which Paul instructs us to, “Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart“.

Consider: to think carefully about, regard with respect, pay attention to.

Paul in essence says, “Stop thinking about what is trapping you in sin. Keep running your race. Think about Jesus.”

Messages such as Hebrews 12: 1-3, always had me thinking something to myself along the lines of “think about Jesus and the torture and death He endured. Lisa, you can endure another needle poke, another day of fatigue, more trials, etc.”

I think there is some merit to that, comparing our circumstances to others who have gone through worse or are currently in a deep struggle.  When discouragement entrapped me today, something that helped in taking my eyes off myself was just that.

I remembered the patients in Australia who have a petition going to attempt to allow them to receive the medication I so easily receive. I remembered the friend fighting cancer with little strength to take care of her family. I saw the homeless couple in the parking lot rearranging their life’s belongings in their car. I focused on the friend with 3 foster children, pouring out her heart each day so the children can find healing. I thought about the lost, having no knowledge of the Loving Father they could find refuge in.

But, I am beginning to see the Hebrews passages in a different light. Rather than only comparing my suffering to Jesus’ suffering, I am beginning to see the magnitude of who He is.

The suffering He endured was for me.

The suffering He endured was necessary.

The suffering He endured met the requirement.

Jesus is better.

If you don’t know, dear one, Jesus is better. He is good. He is to be trusted. He is above all. He holds it all together. When you are in the midst of your trial, you must remember. You must consider. Jesus is better.

sunset cross

 

Heal

WordPress Daily Post Heal (one word prompt)

To heal. To fill in the holes. To cleanse the wounds. To dry the tears. To mend the break.

The Lord takes the weak, the needy and the broken and He heals.

He brings Clarity to situations that were once chaos.

He brings Wholeness to places that were just pieces.

He brings Wisdom to minds that were just confusion.

The Lord still heals.

I know this because each day

He is filling me,

mending me,

cleansing me,

Healing me.

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Where Was God in All of This – Part III

Years went by and I continued on with my rare disease of aHUS (Where Was God in All of This–Part I). Each birthday that passed, I thanked God for another year. I would soon learn that many with my disease had not been so fortunate.

Around 2013, 12 years after my original diagnosis, my kidneys began a further slow decline. The doctor could offer no specific reason for the decline, just that my kidney had been suffering a long time and they were probably beginning to tire out. We decided our goal would be to avoid dialysis so I should begin testing for a future kidney transplant.

I left that appointment and at least 5 more future appointments in denial but also compliant to my doctor’s wishes.

I began the testing process at the UW Medical Center in Seattle. I looked at each step along the way as something I was just doing “just in case” the time came. In my mind, I wasn’t really going to have a transplant. God would spare me from that. After all, He had kept me for the last 12 years.

When I finally met with the nephrologist (kidney specialist) at the transplant clinic, my delusion came crashing down. “You are now wavering between 13 and 20% and most of the time closer to the 13% range. We don’t see any reason to wait to do the surgery. You are healthy, aside from your kidney disease, so this is the time to do it.”

I left that appointment shaking. In fact, much of the time over the next few months, I found myself shaking.

My loving brother-in-law endured all of the necessary testing and would be my donor. We were all set in January 2015. A date was chosen, plans were made, and peace flooded my heart.

But, God…Doctors, nurses, coordinators, myself, my family, my brother-in-law, his family, our employers…all of us here on earth put our hope and plans on that transplant date. But, God…(Read about His plan here: (A Welcome Interruption)

In  Genesis 22:1-19, one of the ultimate “But, God “stories is told. Abraham is asked by God to sacrifice his beloved, long-awaited for son, Isaac. Abraham is given specific instruction on where to go and what to do. I imagine Abraham shaking as he prepared for the journey they would take up the mountain to the place of the sacrifice. I imagine him hesitating at times, waiting for God to intervene. Whatever fear or uncertainty Abraham faced, he didn’t allow it to deter him from his obedience to God. He traveled the 50 miles to the appointed spot, without knowing what the next step would be. Abraham proceeded just as God directed him, without knowing how it would all turn out.

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In the end, just as Abraham raised the knife to Isaac, the Lord sent an angel who called out to Abraham to, “Stop!” Can you imagine the relief? But, again, Abraham didn’t know what would follow. But, again, his trust was in God. He would continue to obey each step as God led.

Ultimately, God spared Isaac and now we have the beautiful example of Abraham’s trust in God to encourage us to obey each step without knowing what will happen next.

When my transplant was cancelled, I had no idea what God intended. Was it just a delay? Was he going to lead me to dialysis?

My Abraham/Isaac moment came when my transplant was cancelled and then through some research online, I discovered a medication called Soliris (Eculizumab). The Lord led me to a Facebook group for people with aHUS. Having never met anyone face-to-face with aHUS, I was so excited to connect with people who shared the same disease. I learned that almost all of them received Soliris, a bi-weekly infusion that kept the disease under control. Many of them experienced increased kidney function through the use of the medication.

Lord, is this from you? Is this medication like the ram you provided for Abraham to sacrifice rather than sacrificing his son?

Each step that followed was directed from the Lord. I walked forward with my trust in God.

If this is your plan, Lord, you will provide a doctor in my area with knowledge about this medication. Through the aHUS Facebook group, I discovered there was a doctor just 30 miles from here that currently provided care for 2 other patients with aHUS and prescribed Soliris for them.

If this is your plan, Lord, you will make a way for me to continue to homeschool, while receiving this medication. Part way through my meeting with the doctor, he asked me if I knew that he had another location where he sees patients. I discovered his other location was exactly 3 miles from my home and I could receive the medication there!

If this is your plan, Lord, the side effects from the medication will be tolerable so I can continue in my calling to teach and parent my girls. Even during the very first infusion, I felt no different during or after the treatment. No negative side effects at all. Praise God. My girls come with me to my infusion. We work on school work at the clinic and finish at home.

Why did the Lord lead me all the way up to the week before my scheduled transplant only to cancel it?

Why did the Lord lead Abraham all the way up the mountain, only to cancel the sacrifice of Isaac and provide a lamb instead?

When the angel of the Lord stopped Abraham up on that mountain, He said, “Now I know that you fear God, since you have not withheld your son, your only son, from Me.”

If the Lord had stopped my transplant when I was still in the fearful, denial, shaking stage, He would not have known my trust in Him. I would not have known my trust in Him. But, in walking each step, I loosened my grasp on my life and began to hold it out to the Lord. Finally, I was at peace with what the Lord called me to do, fully lay my life in His hands. That’s when He could call out, “Stop! Do not continue! I see your trust. I have a different plan!”

And, I could reply, “Here I am! I am yours, Lord. Finally, my life is yours!”

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Read more about my aHUS journey: Where Was God in All of This–Part I and Where Was God in All of This–Part II

Where Was God in All of This–Part II

I have seen God’s hand in my life all throughout the 15 years since receiving the diagnosis of  aHUS(atypical Hemolytic Uremic Syndrome).

In Isaiah 61:3, God’s Word says, he will bring beauty from ashes.

When I think about ashes, I think of the aftermath of a warm, comforting fire. A fire in a fireplace is both beautiful and powerful. Beautiful in that it produces a comforting warmth, but powerful in the burning heat it generates. But, after the fire dies out, all that’s left is a smoldering pile of powdery black ash. No beauty and no power. No pretty colors, or dancing flames.

camp_fire_ashes

But, God’s Word says He will bring beauty from ashes. He’s in the business of taking what Satan meant for harm and using it to build up the one He loves.

Prior to my diagnosis, I was living my life mainly for me. I had my plan for each day, my goals I was pursuing, and my mind was pretty well occupied with ME.

When my world came to a screeching halt, I found that some days, I was waking up asking, “What do you have for me today, God?” I wasn’t going to work. I was no longer attending my master’s program classes. My life slowed way down and I was beginning to see things differently.

One day, I was walking through the mall, with no intention of shopping. I studied the people walking by me. I saw people smiling, laughing, quickly walking to their next stop, dealing with crying children. I began making a judgment about each person. None of them were struggling with anything as big as what I was struggling with. None of them had just come from having plasmapherisis. None of them were 25 years old and having to make the decision of whether to try the chemotherapy the doctor was suggesting “might put the disease into remission”.

But, as God was working my ashes into beauty, He opened my eyes to the fact that no one at the mall knew my struggle. They couldn’t look at me and see that I was carrying a life threatening disease inside of my cells. They couldn’t see the plastic tubes implanted in my chest, hanging out of my body, like extra limbs. They would never know the doctor had just hours earlier showed me lab results indicating my kidney function was now less than 30%.

My next thought was, I don’t know their struggle either. 

Maybe the woman I just passed with the designer jeans, perfect hair and make up, arms full of packages, deals with financial issues due to her shopping addiction.

Maybe the mom I passed with the crying kids is a single mom, trying to raise her children all on her own.

Maybe the teenage boy I passed by is strugling with temptation and is surrounded by friends who use drugs.

I don’t know the trials they are facing. And, although my trial was huge for me, their trial was huge for them.

Reflecting on my afternoon at the mall later at home, I wrote in my journal. God was opening my eyes to the fact that everyone has struggles. I was not the only one and my pity party needed to stop.

Further on down the page, I wrote the craziest thing. I would erase it and then rewrite it again. I would stare at it. Look away for a while. Look back. There it was.

My disease is a gift. 

“God, is this okay? I have been praying for you to take away this disease for months. Is it okay to see it as…a gift?”

With time, I realized God was okay with that. In fact, He was more than okay with that.

The Bible is full of talk about thankfulness. Here are a few of my favorites:

Ephesians 5:20, “giving thanks always for all things to God the Father in the name of our Lord Jesus Christ”

Psalm 100:4, Enter into His gates with thanksgiving, And into His courts with praise. Be thankful to Him, and bless His name.

1 Thessalonians 5:18, “in everything give thanks; for this is the will of God in Christ Jesus for you.”

I began to see that I really had two choices, bitter or better. I could be bitter about my situation, or I could allow God to make me better through my situation. I have spent time with both choices. Stuck in bitterness, resentment, self-centeredness. I found no gain with bitterness. My situation didn’t change, my disease didn’t go away, but I just added to my problems with my spiteful attitude. Bitterness led to further ashes in my life.

In Ephesians, the Bible tell us to put away all bitterness.

The gift came through this trial when I let go of bitterness, let go of my grasp. And, let God transform my ashes into beauty. 

beauty-for-ashes

Stayed tuned for Part III of Where Was God in All of This

Read Part I, here: Where Was God in All of This–Part I