He Knew What He was Getting Into

This past weekend I attended the Created for Care adoption conference in Atlanta.  There were about 450 other women who are thinking of adopting, waiting for a child, and home with children.  It was a time of reflecting, learning, worship, prayer, and fun. There were sessions regarding all areas of adoption and orphan care.  Every session and main session I attended was amazing and left me needing some time to process everything I heard.  I would love to share all that I learned, but this post would be way too long.

Instead of sharing everything I learned, I will share with you the message I knew God wanted me to hear.  It was a message that restored me and filled my heart with an overwhelming peace.  Before I share the message, I need to give you a bit of background.

When God called us to adopt I had no idea how hard and amazing this journey would be.  It has been the hardest journey God has led us on and the best journey God has led us on.  There were times I tried doing it in my own strength but quickly learned to fall to my knees and surrender to His plan.  Not only did life change drastically for us but it also changed drastically for Kahsay.  This is why the transition and bonding time can be hard and long.  In the midst of this struggle we were told the news of Kahsay's special needs.  If you are unaware of this story you can read it here MRI results.  While we have seen God's miracles in Kahsay's life, there are still the daily demands of his care that leave me feeling unequipped and unable to be the best mom for Kahsay.  I know these messages are from the devil, but it takes constant time in the word and on my knees to keep me focused and encouraged.

The day before I was to leave for this conference I was in my room crying out to God.  Kahsay was sick AGAIN!  He was puking during every nap, and struggling to keep his food in.  His nutritionist already is concerned about his lack of weight gain since October and again he is puking up much of what goes in.  Feeding has been a big struggle since we have come home.  It took us months to finally get his feeding safe, and now we may be right back at the beginning.  His neuro development doctor suggested we get another swallow study done to be sure he is not still aspirating.  Since he does not tolerate any purees, formula is what gives him the calories he needs to develop.  I was feeling completely defeated.  I know none of this was in my control, but for some reason I was taking it all on my own shoulders.  I was searching within my human strength to handle it.  I was having this nice little pity party.  I convinced myself that God was disappointed with me and probably wished he had chosen a different mom for Kahsay that could handle this with strength and patience. I even got a bit angry with God.  I was certain I deserved for Him to take away this pain and struggle.  After wiping away my tears I decided to suck it up and try better.  Honestly I still felt like someone could do a much better job.  God called me to this very important job, and I felt like I was letting God and Kahsay down.

These feelings seemed to creep up while attending the first few sessions at the conference.  On Saturday I attended a session titled "The Connected Mom- Staying Close to the Lord among the Demands of Parenting".  The paragraph that followed was this:  "All mothers have seasons when our circumstances, and even the people we love most, place intense demands on our strengths and test our weaknesses.  How do we stay strong?  How do we get refreshed and strengthened so that there is an overflow available to meet the needs around us?".  Sounds amazing huh?  It was exactly was I was looking for.  I knew I lacked that constant connection with my Heavenly Father.  I knew I needed to do better at being creative to find those small moments with Him.

I will say the message of this session was exactly what God wanted me to hear.  It was not the part of trying to find time with Him that hit me the hardest.  The encouragement and tools the speaker offered for this were great and gave me hope.  The part of the message that hit me the hardest was the songs she played.  All three songs were exactly what I needed to hear but one in particular brought me to tears and broke me.  The song "I Knew what I was Getting Into" by Misty Edwards has such a beautiful message that I had to post the words and You Tube video below.

I Knew What I was Getting Into- You Tube video

CHORUS

I knew what I was getting into when called you.
I knew what I was getting into when I said your name, but I said it just the same.
I knew what I was getting into and I still want you.
I knew what I was getting into.

I knew what I was getting into and I still chose you.
I knew what I was getting into and I still want you.
I knew what I was getting into when I said your name, but I said it just the same.
I knew what I was getting into.

VERSE

And I am not shocked by your weakness.
And I am not shocked even by your sin.
And I am not shocked by your brokenness.

Cuz only I can see the end from the beginning.
And only I can see where this is going.
And only I can see the end from the beginning.
And I see in you the seeds of love.
And I see in you strength when all you see is your failure and all you feel is ashamed.
I can see deeper than that.
I know you better than that.

CHORUS

VERSE

Your only at the beginning.
You've only just begun and I know where you are going
And all you can see in the moment is that your hurting.
And all you can see in the moment is that your aching.


BRIDGE

Just don't give up.
And don't give in.
If you don't quit. You win, you win.

Just don't give up.
And don't give in.
If you don't quit. You win, you win.

Everything is in my hands.
It's going to be alright.
Everything is in my hands.
It's going to be alright.
It's going to be okay.
Everything is in my hands.
It's going to be alright.
It's going to be Okay.
And you don't have to pretend to be something or someone your not.
Cuz I know you better than that, even better, even better than that.
Listen my Beloved.

CHORUS

As I sat there crying and listening to this song I realized God called ME to be Kahsay's mom.  God called ME to walk this journey with him.  God called ME!  He did not want someone else.  I was the perfect imperfect person for this particular calling.  Why did I think God was surprised by my shortcomings?  Why did I think He expected me to the perfect example of strength and patience?  Why did I think God wanted anyone but ME to fall to my knees, surrender, and allow Him to lead me through this?

Needless to say I came home with a new and refreshed spirit.  God has called me to be His tool but He will equip me and carry out exactly what He has planned.  I do not need to do anything but stay connected to Him and trust He's got this.

Here are the other two songs we listened to.  They are just as amazing!  I hope they give you the encouragement you need today.

You Know Me

Come to Me

Merry Christmas!

Gabbie - 8 years old

Alexa- 5 years old

Maia- 3 years old

Kahsay- 10 months old

God's Blessing of HOPE

Today was amazing!!  We feel so encouraged.  Here is an overview of what we learned.

We began by looking at the MRI.  

The frontal lobes are full and beefy.  The posterior lobes are skinny and wasted.

It is apparent it is not what he started with, which is evidence that something happened in utero or possibly during birth.  It was not a genetic malformation.

There is less brain tissue in the posterior lobes which also means less fluid

His frontal lobe will grow normal.

She does not think the head will look abnormal as it grows.  It may not be normal size, but it should remain round.  

While the optic nerve is present it is very thin and hard to see.  This is a consequence from not having input from the area of the brain that controls vision.  His visual impairment is not an eye issue but an input issue.

It is likely his vision will get better with time even up to the ages of 3 or 4.  To what extent we do not know because the damage was severe.

His corpus callosum does show thinning, but she also said some people are born without one and have no idea until they have a head scan for some other unrelated reason.  She said the brain usually finds other pathways to connect the sides.

His cerebellum is healthy- which controls cognitive learning and balance.  This does not mean he will not have struggles with learning, but some of it could be mainly due to his vision impairment.  We will have a better understanding around 3 years of age.

The damage was further up on the right side of the brain which explains his left side weakness.  She said she already sees evidence that his brain is learning to overcome that.  Neuroplasticity was the term she used. Neuroplasticity is the brain's ability to reorganize itself by forming new neural connections throughout life. Neuroplasticity allows the neurons (nerve cells) in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment.

Best news- More of his brain is healthy than not! Our jaws dropped.  That was not what we expected to hear!  We thought the majority of his brain was effected.

She encouraged us by saying kids almost always do better than an MRI.

After we looked at the MRI we went back to the room where she answered our questions-

The Dr. said she has never seen an MRI like Kahsays.  In fact she said all the pediatric specialists get together once a month to discuss unique head scans.  She asked if she could bring his.  She also said the Neurologist will be there which could possibly get us an earlier appointment than May 1.

His diagnosis of Cerebral Palsy is just a clinical diagnosis.  She said by 18 months we will know if it is true or if he is out of the woods.  We will only know as he gets older. She basically said he is at risk for Cerebral Palsy but does not necessarily have it.  Interesting huh?  

He is being tested to rule out a metabolic disorder.  She said it is unlikely.  If he for some reason tests positive then there could continue to be insult to the brain.  Please pray this comes back negative.  This could be an entirely different journey.

Feeding

She basically laughed when I asked her about a feeding tube.  I LOVE her!!!!  She obviously has confidence that his ability to swallow and eat safely will improve over time.

I asked her if it was necessary for Kahsay to wake up to eat twice during the night.  She said there is really no need for him to eat at all during the night seeing as he is a chunky monkey.  She told me I could let him fuss it out.  YES!!!!!

Sleeping

His brain damage has no effects on his sleep patterns besides vision issues.  (still unsure what that means until we talk to his eye Dr. about this)

Like most 9 month old babies he should be able to soothe himself to sleep.  She gave me permission to slowly ween him from needing constant butt patting in order to fall asleep (tough love here we come!).  This is music to my ears.  Bedtime and naptime routine has been exhausting but I felt it was necessary if his brain injury made it harder for him to soothe himself.

Vision

This will be his biggest hurdle.

His vision impairment could cause learning delays and motor delays.  In comparison to what we were initially told, this was no big deal.

Mobility

She did not hesitate to say she feels confident Kahsay will crawl and walk someday.  (PRAISE THE LORD!!!!!!!!!) 

It obviously could take him much longer than other children, but it is possible.

The Dr. was so encouraging but honest about the the severity of the damage. She sure has high hopes for Kahsay, as do we.  We asked why our pediatrician told us such horrible news.  In his defense she informed us diagnostics is tricky.  Our pediatrician was only reading what he saw.  She has 25 years of experience and has learned our brains constantly surprise us.  She was so happy with the development she already saw with him and assured us with the help he will receive and the fact that he is in our family, he will thrive beyond an MRI.  

Obviously there is no way to predict the future, however looking at my son's future with such hope brings me peace.  My heart feels so full.  We know there will be hurdles and struggles in his path due to his brain injury however; we will not let an MRI predict those.  His Dr. was God's angel in our life today.  

 seen kids perform far past their diagnosis more often than not.

How is Kahsay Doing?

So many of you have asked how Kahsay is doing.  I think it is time I introduce you to our little man.
(Sorry the list is really long)

1. I have been home now for 4 months.
2. I weigh about 18 pounds and have the cutest thunder thighs.
3. I have beautiful brown eyes that bring attention everywhere I go.
4. I am REALLY loud.
5. I seem to grow the majority of my hair on my left side and it seems to grow in tufts.  My mom is ready to finally cut it so it evens out a bit.
6. I did wear a helmet 23 hours a day but my orthotist decided to have me take it off until he is sure it is safe for me to wear it.
7. I have acid reflux really bad and take Prevacid one time per day.
8. I go to bed at 6:00 and usually wake up at 6:00.  Most of the time I also wake up 1 or 2 times per night (only because I am sure my mom misses seeing me.)
9. I have three sisters who fight over me and love to make me laugh.
10. My laugh is contagious and sounds like Woody the Woodpecker when I am tired.
11. I go to physical therapy on Mondays to work on muscle control, eye tracking, and so much more.
12. I have only been home 4 months and have had an EEG, an MRI, 2 eye exams,  a swallow study, a head x ray, a Urology exam, 3 head scans, and a few I can't even remember.
13. I like riding in the car.
14. I go to Occupational Therapy on Fridays.  My therapist works with me on muscle awareness, sensory processing, and so much more.
15. I usually cry (really hard) for my therapy appointments because they make me do hard things.
16. I silently aspirate (when food, liquids, or stomach contents are swallowed poorly, and go into the lungs by mistake). with every swallow.  They are trying to thicken my bottles to make this better.  This is a work in progress.
17. If thickening my bottles doesn't work I will have to go to an ENT to see why this is happening.
18. I hate to eat anything but Soy Formula.  Eating baby food makes me gag and sends my senses through the roof.
19. I am going to feeding therapy 2 times per week so that I get better at that.
20. I am obsessed with my jumperoo.
21. My favorite song is the theme song from VBS called "Fly".  My family can sing this to me and I will stop crying.
22. My therapists are probably so sick of hearing this song.  My mom sings it at least 5 times during my therapy sessions.
23. My sister Gabbie loves to carry me around and help take care of me.
24. My sister Alexa likes to play a game called "bullet" with me.  She lays me down and then pulls me up like a bullet.
25. My sister Maia sings "Fly" to me. Sometimes I wish she would come to therapy because I get sick of hearing my mom sing it.
26. I have left side weakness and hate to grab or touch anything with my left hand.
27. I have poor tongue and lip control so my tongue is always hanging outside of my mouth.  I figured it's the best way to see which way the wind is blowing.
28. When I fall asleep I rock my head back and forth to soothe myself.
29. I love when my mom and dad rock me and feed me my bottle before I go to bed.
30. I take 2 naps a day.
31. I can roll over both ways.
32. After dinner my family sings songs and I get so excited to join them at the dinner table.
33. I can sit up but for only a couple minutes on my own.
34. I have trouble seeing clearly, but my parents and doctors are still trying to figure that one out.
35. When I am fussy my mom lays me on the floor next to my CD player and I am in heaven.
36.  I know a large portion of my brain is not there, but I promise you if you hang with me you would never know.
37. I still sometimes struggle in new places.
38. I think my bath is the bomb.
39. Because I silently aspirate I could be more likely to get pneumonia.  When I get a cold my cough is really bad and usually makes me puke.
40.  I give my mom lots and lots and lots of laundry.
41. People in public are always stopping my mom to tell her how cute I am.
42. I do not play with toys or grab them so my entertainment usually comes from bouncing or jumping.
43. I have already and will continue to change the lives of those who meet me.
44. God is not done with me yet.

How Are We Doing?

I figured I had better update everyone on how we are doing.  I will repeat what I said on Facebook.  We are completely humbled at the outpouring of prayers and encouragement we have received.  I have no idea how we would be functioning without all of you who have lifted us up in prayer this week.  On Monday I spent the day wanting Tuesday to come.  On Tuesday I didn't feel any better.  It was a constant roller coaster of emotions.  I felt fear for the future, doubt in my abilities to parent a child with special needs, anger that other families were coming home with "healthy" children, peace that God was near, and comfort knowing that God has "got this".  We heard so many amazing stories from many of you of how God worked miracles in the lives of your friends and loved ones.  We cling to the hope that God will perform a miracle in Kahsay's brain also, however we are trying to keep ourselves grounded in the reality that maybe that is not Kahsay's story.  My dad reminded me that God has already performed a miracle in Kahsay's life.  If he would have stayed in Ethiopia his quality of life would look very different.

At this point we are taking it moment by moment.  Not focusing on the fears of the future is difficult.  Questions like:  How would life change if he has to be in a wheelchair?  Will he need a feeding tube someday?  Will we be taking him to therapy for the rest of his life?  Will he experience the joy of running and playing outside? Will he understand the love his biological parents had for him?  Will we ever hear him say, "I love you"?  and so on and so on...... On the day we found out about his diagnosis the words I read in the devotional book Jesus Calling spoke strongly to me.

"No matter what your circumstances may be, you can find joy in My presence.  Some days are overcast and gloomy; you feel the strain of the journey, which seems endless.  Begin by remembering that I have created this day; it is not a chance occurrence.  Recall  that I am present with you whether you sense My Presence or not.  Rejoice in the fact that I understand you perfectly, and I know exactly what you are experiencing. "

I know God is saddened by this.  I know He weeps with me when I physically can't hold it together.  I know He hates to see His children suffer.  I also know He loves Kahsay and will never let him go.  I can only stay positive because we serve a God that has given me a "crazy peace" ( a term another mom of a special needs child used).  It is a peace I cannot explain.  It is a peace that only comes from Him.

We have an appointment with the Neuro Child Development Center at DeVos Children's Hospital on November 16.  We look forward to meeting with them to hear their advice on our next steps.

Thank you for your prayers and encouragement.

MRI Results (Our Plans vs. God's Plans)

Today Jason met with our pediatrician to go over the MRI Kahsay had last Tuesday.  We had heard last week a vague explanation of the results.  We knew they were not good, but were left with many uncertainties and questions.  I decided to stay home with Kahsay so he could take a nap before his physical therapy appointment.  I knew it wasn't good when Jason came home unable to control the tears.  Immediately my heart started to pound and I knew the meeting was not good.

He began by asking the Dr. if he could see the MRI as they went over it. The pediatrician explained to Jason that there was nothing to see, because there was nothing there.  Here is what we were told:

Kahsay suffered a massive intrauterine stroke.  It severely damaged his 3 posterior lobes of his brain.  The frontal lobes have not been effected, and his brain stem is healthy.  The 3 parts that have been damaged are completely gone.  They will not function.  Because they are not there, Kahsay's head will also not grow in those areas.  He also explained to us that he has severe cerebral palsy. With this information our Dr. said Kahsay will have severe developmental delays.  He may never walk, talk, feed himself, or learn as you normally would.  He will sustain life because his brain stem was not effected.  His vision is impaired but to what extent we are unsure.  So much of this only time will tell.


We meet with our neuro-child development center in the next 3-4 weeks.  They will be able to walk us through the best path to take with Kahsay.  They will prepare us for what struggles lie ahead, and provide us with the best resources to help Kahsay.

At this point we are grieving the loss of the hopes and dreams we originally had for Kahsay.  We are angry that our son will not experience life the way we thought he would.  We are fearful of what lies ahead for our family.  We are thankful Kahsay is with us and able receive the best care possible.  We are hopeful, because we serve a God who is strong and mighty.

Kahsay is a gift from God.  He is our son.  We love him deeply.  He has changed our lives in ways we never thought possible.  The diagnosis the Dr. gave us today does not seem to match the laughing, kicking child I see in my living room as we speak.  It does not match the child who giggles when played with.  It does not match the child who can't wait to join us at the dinner table when we sing.  I am thankful for answers and a diagnosis, but I have no problem shoving that diagnosis in the garbage and trusting God's plans.  His plans may not include complete or any healing, but they will be exactly as He desired.

Broken to Beautiful (beware long post)

I know it has been way too long since my last post. Great things have happened here. We have been home with Kahsay now for almost 3 months. After our first trip my heart ached so much for our son that I couldn't blog. After our second trip life was so crazy I just did not have the time. I will admit I am not much of the blogging type, but wanted people to be able to follow our adoption journey. Since we have been home with Kahsay our lives have changed in ways I never expected. I debated on writing this testimony, but thought if I can reach one person through this it is worth it.

Let me begin by saying I am not a gifted writer. I only speak from my heart and testify to the work Christ has done.

When we began our adoption journey 2 1/2 years ago it started with fear but a strong desire to follow God's call. The financial part was difficult but God took care of that. The paperwork sucked (sorry that is how I felt). The wait was at times excruciating. The reminders from God that we were doing exactly what He wanted brought about peace. The unknown of when God would bring our boy home taught us patience. The support, prayers, and encouragement from family, friends, church family, and even strangers was overwhelming. The journey before seeing our son's face had it's ups and downs, but nothing compared to what God had planned.

It was April 5 when we saw our son's face for the first time. We celebrated together with hugs and tears of excitement. We were not prepared for the way our hearts broke for the story that brought him into our lives. His story is an amazing example of selfless love. I could only compare it the same selfless love God had for us when He allowed his one and only son to be the sacrifice for all of us. We look forward to the day when we will be able to share with Kahsay how much he was loved and wanted.

Our first trip to meet him was filled with excitement but also a bit of anxiety. We could not wait to finally hold and kiss our son, but also knew it would be a very different experience than the birth of our girls. We knew he would look at us with strange eyes. We watched as his Special Mother knew exactly how to feed him his bottle and put him to sleep. We could see the peace he had when we handed him to her when he was fussy. The special mothers who loved on Kahsay are our heroes. They give each child so much love and attention even with the knowledge that this child will be gone from their lives in a short while. It was hard as a mother to not be able to soothe your child. It was hard as a mother to only be able to hold him while he slept. The day we had to leave Kahsay in Ethiopia was horrible. The only peace we had was knowing he was being well taken care of and loved on.

The weeks between trip 1 and 2 were so hard for me. I felt like I gave birth and then left the baby in the hospital. I could not focus on anything else going on around me. I forgot about appointments, suffered from some depression, and longed for God to be near to me. It was hard to talk about it, because no one else except my husband and other adoptive families understood the deep desire to have my son home. I tried to focus on the time we had left as a family of five. I tried to spend more individual time with my girls and Jason. While my intentions were good, my heart still focused so much on Kahsay.

Trip 2 came, and after some crazy paperwork drama, God worked a miracle. We arrived at Hannah's Hope to pick up Kahsay forever. In the first hour during our talk with the director he screamed, puked, and finally fell asleep. He slept the entire way to the hotel. When we arrived he woke up and screamed in terror for over 2 hours. The next three days in Ethiopia were very hard. It is so heart wrenching to see your child look at you in fear. He did bless us with a few smiles, but looking back I see now he was very guarded. We survived the "fabulous" flights home and could not wait to be united as a family forever. Seeing our family and friends at the airport to welcome us home was all I had expected it to be. It felt amazing to finally be a family of 6 and introduce Kahsay to his sisters.

The next few days we were on a "finally home" high. We watched as the girls fought over him and as family and friends couldn't wait to finally catch a glimpse of him. Kahsay seemed happy and looked as if he was settling in. The next 6 weeks were what I refer to as the "trenches". We were encouraged to cocoon in our home and spend time as a family so the bonding between Kahsay and us could begin. We were committed to this as much as possible. We also did not let anyone else feed, diaper, and care for Kahsay's needs. We did allow grandparents and aunts and uncles to hold him for brief periods. As much as possible we limited our time out of the house to ensure Kahsay did not get overwhelmed. We noticed quickly that he continued to be guarded and limited his eye contact. He constantly wanted to be sleeping and tended to be fussy when he was awake. We knew this was how he was coping with this drastic change in his life.

Daily life was filled with tears from Kahsay and I. We fought every nap time and bedtime. I had this strong desire as his mom to rock him to sleep as he looked into my eyes. That is far from what happened. He tried everything in his power to not be close to me, yet he could not soothe himself. I struggled between trying to love him and be close to him even when I wanted to put him in his bed and be far far away. We both sobbed together. He was mourning what he once knew, and I was crying out for God to save me and heal this relationship. There were a few weeks even when I did not want to be the one to take care of him. I began to feel anger and resentment.  I spent hours trying to soothe him to sleep.  Once he was sleeping it lasted only about 30 minutes. I tried everything we are told to try with an adopted child.  Sometimes these methods would work and sometimes I failed miserably. I desperately wanted Kahsay to love me.  I desperately wanted to feel the same love for him as I felt for my girls.  My 3 girls were being ignored and left to figure out the day on their own.  I pasted a "this is great" smile on my face when seeing people.  I shared with most of my family members the struggle, but never too detailed for fear they would sense my weakness.  This was when God broke me.  I finally picked up the phone one day and called someone from my church who told me to call them anytime if I needed prayers or anything else.  I called her crying and pleading for her to pray for me and Kahsay.  I have never been good at asking for help and admitting I need help.  She prayed with me on the phone and assured me she would keep praying for me.  When I hung up the phone I immediately felt a peace that only God could provide.  It was from that moment that God began to miraculously bring beauty to a broken relationship.  It did not miraculously turn from bad to good.  The journey to healing was still hard.  There were still days of tears on both ends.  To be honest there are still days of tears.  I will never forget the night Kahsay let me rock him to sleep without protest.  He finally felt safe in my arms and knew I was going to provide for his needs and not give up on him.  His walls finally started to break down and I was prepared to be the foundation he could rely on.  None of this was in my own doing.  This healing was only possible through God.

Today when I look at my son I feel such an intense love.  I can testify today that the love I feel for him is no different than the love I feel for his sisters.  He has changed our lives in ways we never expected.  He has brought such life to our home.  I am grateful God has chosen me to be Kahsay's mom.

Adoption is hard, but AMAZING.  It is the hardest thing I have ever done, but also the best.  This journey has brought me to a closer understanding of Christ's love for us.  What started out as a broken relationship has been made into something beautiful.  I am grateful for the journey God has led us to.  It is far from over and still will be hard.  I am grateful that I have a God that can have victory over any trial.  I am grateful for a God that can break me in order to make me stronger.  We often hear how great we are that we adopted and how lucky Kahsay is.  Kahsay has brought such blessing to our lives.  We give all credit to God.  We would not be where we are today without Him.  He brought us here and we know He will see us through.