Tuesday, July 30, 2013

Update on Sammy

It has been awhile since I had any news to share with you about Sammy.  The last time I shared anything I think was when he had his sedated CT Scan.  The scan had come back clean and no CP or any other abnormalities had been found.  His brain and entire spine had been scanned.  The next step, then, was to do some blood work.  It took awhile to get it done and then receive the results as it was a fairly complex test that had to be done.  Last week we received a phone call that has taken us one step closer to the bottom of this crazy mystery:  Sammy has a variant in his mitochondrial DNA of unknown significance.  What in the world does that mean?!  

Well, we do not know, exactly, but what we do know at this time is that his mitochondrial DNA has an abnormal sequence and it just may be the cause of the physical symptoms that Sammy experiences:  fatigue, tremors, muscle spasms, etc...  Our next step is to see a geneticist and have more blood work done and then possibly a muscle biopsy.  Mitochondrial disease can have a wide range of severity and if this is what Sammy is dealing with, it is extremely mild.  Sammy runs, plays, walks (albeit with an adorable pigeon toed gait), and is highly intelligent.  In some children it is far more severe and even life-threatening.

The neurologist gave me the website for the United Mitochondrial Disease Foundation.  Again, we are not 100% certain that this is what Sammy has, exactly, but it gives some excellent information on the disease and the varying factors.  Some individuals have mitochondrial variances and it is actually so rare that there is no known name for it.  Just like with Down Syndrome:  there is Trisomy 21 and then you can have a Mosaic form of it.  

In the meantime we are going to give Sammy some natural supplements per the neurologist's suggestion and see if that helps with his stamina and strength.  I am also trying to get him into the same geneticist that Dima sees at Shands in Gainesville.  If we are fortunate enough, the geneticist may be able to see Sammy in October.  

Here are some pictures and videos from our adventures in St. Petersburg:

Sammy & Dima waiting on the neurologist to come in.  They were playing on the iPad and having a swell time together.  Brothers forever!!
Dima giggling at Sammy.  Poor Sammy did not want his picture to be taken.

Would you please continue to uplift Sammy in prayer?  Pray that we get into the geneticist in a timely manner and that he would be able to help us get as close to the bottom of this as we are able?  And as school begins next week please pray for strength and stamina for Sammy.  That he would adjust to the school schedule and get good nights of sleep and rest.  Thank you!

Monday, July 22, 2013

Fantastic Weekend = Full Hearts

This past weekend was just the best.  It is not often that I say that as our weekends usually not all that exciting.  But this one was one for the books!

Friday evening the boys had their last night of VBS at church.  It ended with a wonderful end of the week program for the parents topped with juice and cookies.  The boys learned so much this past week and we were all sad for it to end.  Those who volunteered went above and beyond and I can honestly say it was the most amazing VBS I have ever seen!

Saturday was another day full of fun for our family.  It was the Key Training Center's annual softball game against the Citrus County Sheriff's Department which was all part of their big Run for the Money week.  Many of our friends were playing in the softball game so we had promised them that we would be there to cheer them on.  Despite the fact that we had not had much sleep all week we rolled out of bed and made it and boy was it worth the effort!  Not only did we get to cheer on our friends, but the Sheriff's Department invited DIMA to play on their team!  Dima actually hit a ball, ran the bases, and scored!  At the end he was the recipient of the game ball.  What a wonderful experience for him.


The Key's dugout.
Eric, Sammy, Elijah & Jeremiah.  If you recall a previous entry where I shared about Donald (the man from the Love Department who accepted Christ), you can see Donald to Eric's right.  He is wearing a bright yellow shirt.
Our family with our dear, dear, dear friend, Troy.  He calls us his "adopted family" and we love him so much.  He sits with us in church every week, loves on Sammy and Dima, and is an encourager to everyone he meets.  This past spring he received an award and he he still managed to turn around and bless others with his words.
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Saturday afternoon I made a trip to the bead store to gather some more items for my necklaces and bracelets.  I took ALL FOUR boys with me and they had a blast.  Not only that, but they were well behaved, too.  For those of you who have not yet visited my Etsy store, please take a moment to check it out.  I am by no means super accomplished at making jewelry but I have fun doing it and am selling my items to help raise money for our adoption.  Here are some examples of what I have made:







 
 

Sunday, of course, was church.  It was another wonderful day of worship with my favorite folks (aka The Love Department) and my heart was just overflowing with love by time my head hit the pillow last night.  Unfortunately I have four little misters who have had a little too much fun and are all down for the count with nasty colds.  Hopefully a quiet day will cure that.  At least we have full hearts and smiles on our faces.

Thursday, July 18, 2013

Redemption

This week has been our church's VBS Week:  Colossal Coaster World - Facing Fears and Trusting God. The Scripture verse for the week is 2 Timothy 1:7:  For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.  It has been an amazing week thus far and I have seen God work in the lives of my boys.  It blesses my heart to see my boys happily learn about the Lord and His love for them.

This is Dima's very first time ever attending a VBS of any kind.  Last summer he was not ready to be a part of anything.  He did not function well in chaotic surroundings and would not listen to anyone but me.  It broke my heart that Dima could not participate in such activities but I prayed that there would come a time when he, too, could be at VBS with his brothers.  This was the summer he was able to do so!  Eric and I somewhat agonized over wether or not we should have him attend with me or without me but thankfully some amazing people offered to work with Dima should he require some extra help.  One such person is my friend, Debi, who is also a caregiver for the Key Training Center.  I knew that if anyone could work with Dima, Debi surely could!  It was indeed time to start allowing Dima to be a typical kid.

So Monday night I took the boys to the church, sat through the very beginning of it all with Dima, and then left shortly after without him.  It was rather surreal.  But according to all who spent time with Dima, he did GREAT and according to Dima, he had FUN!  It was also apparent that Dima was retaining the information being taught and he was taking it to heart.  Every night since Monday he has slept with the index card that has this week's memory verse and he can recite most of it.  He has also been singing the songs throughout the day and asks, "Time to go to church?".

Throughout the week various volunteers have been snapping pictures and videos of Dima.  They are thrilled to watch him in action and know that he has come such a long way in the past two years.

Dima and friends (Sammy is in there, too!) singing the theme song from  VBS.
Dima is in the green shirt right in the center of the stage.
Dima and the amazing Miss Debi!

But last night something clicked.  The lesson was about the "A B C's":  A= admit that you are a sinner, B=  believe that Jesus Christ is Lord and Savior, and C= confess your sins and accept Christ.  Dima must have been paying attention and took this lesson to heart.  As I was tucking him into bed last evening Dima suddenly exclaimed, "ABC!!  ABC!!  Ask Jesus ABC!!".  At first I thought he was just telling me about what he had learned but Dima was not going to let up.  Finally I thought to ask, "Dima, are you telling me that you want to ask Jesus into your heart?"  His faces lights up and he says, "YES!!!".  Before I could say anything else he jumps out of bed and runs across the house to his daddy.  So Eric got on his knees with Dima and helped lead Dima to the Lord!  Because of all of the yelling Dima did while running across the house, Jeremiah, Elijah, and Sammy all came out to see what was going on; they, too, got to witness their brother coming to the Lord.  I sincerely believe that Dima knew what he was doing.  If you ask him who he has in his heart he will gladly tell you that it is Jesus.  I rejoice that Dima was able to make that decision and I remain grateful to the many people that helped be a part of his adoption story.

Friends, this time two years ago Dima lived in an orphanage in Kremenchuk, Ukraine and had only heard the name of Jesus once or twice prior to becoming a part of our family.  So many people tried to talk us out of adopting Dima.  Well, I hope they see this entry and see that Dima now has the amazing gift of eternal life!  THIS is why we adopted Dima and THIS is why we will continue to work towards adopting Channah.  It is not just about US getting a child, it is about a child having the opportunity of becoming part of a family where they will have the opportunity to know the Lord!  

Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”  Matthew 19:14

I leave you with a video from last night.  I cannot watch it without my eyes getting wet.  Dima is surely on the ride of his life and it has been quite a ride especially these past two years.  This, my friends, is what redemption of an orphan looks like (he is in the front and center wearing the dark blue t-shirt and silver athletic shorts)....


Sunday, July 14, 2013

Everyone Needs Forgiveness

As I have shared before Eric and I volunteer with our church's special needs ministry called the Love Department.  Each week Eric, myself, and a bunch of other wonderful volunteers serve on average, about 75 adults and sometimes children.  It is set up to be like a mini church service with a time of worship, teaching, prayer, and then we break out into Sunday school classes.  I'm not going to lie my favorite part of Sunday mornings is worshipping with these amazing folks; there is nothing like it in the whole world!


Last Sunday my oldest son, Jeremiah, got a hold of my camera and took pictures.  This is Sammy, myself, and my dear friend, Andy.  Andy does not say much but has a smile that just makes you want to give him a big hug.  I always tell him that his smile is his way of sharing Jesus with the world.  Then Andy winks at me.
Jeremiah also snapped a picture of his daddy sharing the main lesson.  You know, every week that I watch my husband minister to our special friends I grow to love him even more.  The love that he has for the Love Department is truly a gift.
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This morning, however, something very special happened and not during our normal Love Department time.  It happened at the end of the main Sunday morning service.  Each week one of our Love Department members, Donald, would go up front for prayer and would always make his rounds to the various Pastors and Deacons standing at the front during the end of the service.  We had even been told a few times to discourage Donald from going up week after week.  Now I do not share this to say that anyone in our church was being ugly towards Donald. I think sometimes we can very easily forget that our special friends need prayer, seek God, and desire to walk with Jesus.  So this morning when Donald made his way up front for prayer I smiled and was eager to see what was about to take place.  Usually another one of the Love Department members would try to grab Donald before he made his way up front.  But this morning Donald made it up front and before we knew it there were 3 Deacons gathered around him.  Then suddenly they motioned for Eric to come up, too.  The men gathered around Donald and prayed for him and I could see that the group of men were moved.  Eric, Donald, and another Love Department member, Aaron, then returned to the pews with Donald and had their arms around him.  Curious as to what happened I scooted down to where they were to inquire and was extremely moved by what I heard:  Donald accepted Jesus Christ as his Lord and Savior!  Tears sprang to my eyes.  My heart was so moved to see an older gentleman with Down Syndrome make such a profound and important decision.  Individuals with special needs require a Savior just like you and me!  The Pastor had seen everything take place and at the very end had our friend, Aaron, (another grown man with Down Syndrome who dreams of being a Pastor) introduce Donald to the entire church.  My heart swelled with joy and love during that most special moment.  My eyes also became very wet.

As the service came to a close and everyone began to head to their various Sunday School classes, Eric said he had a great idea for when we got over to the Love Department.  During his time of teaching he taught on the subject of forgiveness.  Everyone was listening intently so Eric also shared how Donald asked Jesus for forgiveness and to be his Lord and Savior.  Donald stood up and  everyone cheered and clapped for him- you could see the joy on Donald's face.  Eric went one step further and shared that anyone could ask Jesus for forgiveness and to be their Savior.  Six members of the Love Department went forward to ask Jesus to be their Lord and Savior!  After we prayed together everyone wanted to sing their favorite song.  What a beautiful moment of worship!  Week after week I am amazed at how God moves among our friends and how God uses them to share the love of Jesus.  Those of us who volunteer are convinced that THEY teach US more than we teach them.

I do not share this to boast about what Eric and I do, rather, I share this as a very real reminder that individuals with special needs need Jesus just like you and me.  They long for a close, intimate relationship with a Savior, just like you and me.  Many of them are able to make that decision, just like you and me.  Don't ever shy away from sharing your faith with your friends who have special needs because you never know- they just may be waiting for someone to lead them to the Lord.



The above video is of the Love Department's favorite song.  I can safely say that singing this song with them after such a powerful morning was just about the sweetest time of worship I have ever had. Some Sunday I will try to get a video of us singing this song.
I cannot wait until Channah experience worship with us!

Friday, July 12, 2013

Just One Word: Yes


We often get asked, "WHY do you adopt children with special needs?"

My short answer is this:  If my God asks me to do something I always say yes.  Jesus said yes to dying on the cross for me therefore I owe everything I have to my Lord and Savior!  And not out of a sense of dreaded obligation, but out of a sense of love for the One who has undying love for me!

But the following is my long answer and I would love to share it with anyone patient enough to read it through:

I LIVE my life, not observe others live theirs. Life is meant to be LIVED!
*The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly. John 10:10

When God asks me to do something, I obey. The blessings of obedience are AMAZING.
*Jesus replied, “If anyone loves me, he will obey my teaching. My Father will love him, and we will come to him and make our home with him. He who does not love me will not obey my teaching. These words you hear are not my own; they belong to the Father who sent me. John 14:23-24

I do not live my life in fear or worry (or try to not base my decisions on fear or worry) because the Word said it is a sin. I don't *want* to sin. Do you?
*Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because He cares for you. 1 Peter 5:6-7

God has proven Himself over and over. He is faithful even when things get rough.
*He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, “My refuge and my fortress, my God, in whom I trust.” For he will deliver you from the snare of the fowler and from the deadly pestilence. He will cover you with his pinions, and under his wings you will find refuge; his faithfulness is a shield and buckler. You will not fear the terror of the night, nor the arrow that flies by day, ... Psalm 91:1-16

The things in life truly worth doing are never easy. Adoption is no exception to this.
*Now faith is the assurance of things hoped for, the conviction of things not seen. Hebrews 11:1

Children are a BLESSING not a *burden* but again, that does not mean it is easy. When the parenting gets tough the parent gets on her knees!
*Behold, children are a heritage from the Lord, the fruit of the womb a reward. Psalm 127:3

And finally, it is my life and that of my family. WE are HAPPY with our decisions. Just because it may seem "outrageous", "crazy", "not thought out", or "just wrong" to you doesn't mean that it is any of these things. If you have a problem with it you might want to take some time to *pray* about it. I am guessing that if you are making such comments prayer has not even crossed your mind.
*Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. Philippians 4:6

Just as our family said yes to adopting Channah, Channah has said yes to having a family!  Below is a video that I received yesterday afternoon from her orphanage.  They are asking her if she wishes to have a Mama and Baba.  Channah replies, "Yes".  They then tell her that she is a good girl.  What an amazing gift to see our future daughter also take a step of faith towards us!