Saturday, December 30, 2017

2017 - The Year We NEVER Want to Repeat

As we come to the end of 2017, we are more than eager to shake off the dust from the year and move forward.  2017 was the worst year of our lives and one that we truly NEVER want to repeat.  Our year end updates are usually positive with lots of wonderful things to report, which is the norm for most people's yearly updates.  Who wants to report the bad stuff?  It's always better to report the good.  Just as in social media, we fall into the trap of trying to always report the good times and often put forth an embellished representation of ourselves or our lives.  As I started thinking about our year end report and how to make our nightmare of a year look happy and good, I decided to make it real and share with you the good, the bad, and the ugly.  As horrid as the year was, God remained faithful and good, so we find joy and encouragement in that.

The beginning of 2017 found us earnestly praying for God's leading and direction to take our whole family on a family missions trip for the first time.  It was a huge step of faith for us as it was a huge financial undertaking. There were concerns about the safety there with some unrest that had been going on. Then there were lots of concerns with Josh and his Autism and whether or not he would be able to handle the unknowns of new places, smells, language, routines, foods, and people not to mention the eleven hour flight one way when he had never flown before.  On top of that, puberty hit hard for Josh starting this Spring causing mood destabilization with his Bipolar.

The brightest and happiest part of our year was the time our family was able to spend together serving God in our favorite country in the Middle Eastern area.  We were amazed by the generosity of family and friends and our church who financially and prayerfully supported our family on this trip making it possible for us to go and helped confirm God's will for us to go on this trip.  The fellowship we had with our brothers and sisters in the Lord over there was so wonderful and encouraging to all.  It was so wonderful to introduce our boys to them and see our love for these dear friends be shared by our boys.  When things got difficult the rest of the year, I often found myself going back to the memories made during this trip and praising God for such a wonderful opportunity and for light in the midst of so many sorrows.

Upon our return from that trip in May, things quickly fell apart.  I returned to work only to severely injure my back lifting a patient which led to intense physical therapy and monthly visits with an orthopedic doctor as I worked to strengthen the area around the herniated, bulging, and torn L4-L5 disc. By the end of the month, we had to hospitalize Josh to help get his mood stabilized.

Things continued to be intense with Josh even after he returned home, and by July, we had to re-hospitalize him.  From that point on, his treatment team started encouraging us to consider residential treatment.  Our home health aide services for Josh fell apart forcing us to have to take turns leaving work early to care for Josh after school. No matter how hard we tried to avoid residential, that's where God led us.  Thankfully, He used a few moms and one dad to really encourage us in the decision and give us hope.  The process of getting Josh into a residential program was very difficult and took over a month to complete.  Upon admission at the beginning of November, things fell apart with the facility backing out on their word to allow Josh to use his natural supplements and essential oils which help to keep him as stable as possible.  We had to make the decision to leave Josh there for his safety even if it meant allowing his mood stability to possibly worsen without those natural supports.  We then began looking for a new facility for Josh who would allow for the use of his natural supports to keep his continuity of care that has been supported by his four treating doctors.

In the middle of November, I ended up in the ER with severe abdominal pain and found out I needed to have a large polyp removed from my uterus as soon as possible.  Surgery was scheduled for the next week on Wednesday, November 23.  It was a simple outpatient surgery, and I was discharged that afternoon and given permission by the surgeon to travel to my parents' house that evening for Thanksgiving.

By that evening, I started to feel very strange but couldn't figure out what was wrong.  That led to a very scary next 24+ hours for my family as I was unresponsive following a grand mal seizure.  For more details on that whole event, read my blog post about the ordeal.  After a two day stay in the ICU and three days total in the hospital, I was released in time for us to return home from our Thanksgiving trip to my parents' house.

Upon arrival home, many appointments with specialists were made and more tests were done to check into the state of my health.  In less than a week after our arrival home, Josh was able to be transferred to a new residential treatment facility where he was able to resume the use of his natural supplements and essential oils.

Also in December, I suddenly got taken out of physical therapy and discharged by my orthopedic and listed as "permanently disabled" with lifting/weight restrictions and permanent light duty classification due to my back injury in May.  After consulting with a lawyer, I am working on getting an appointment with a physiatrist to be able to resume physical therapy and work my way up to a higher lifting weight ability which will continue to be covered by workman's comp.

Just this past week, I was cleared by the cardiologist regarding the heart complications I was experiencing since my hospitalization in November.  There was concern about permanent damage to my heart from my dangerously low sodium levels that caused the near-death experience in the first place.  However, the symptoms were not from the damage but instead a complication from the de-conditioning from being so sick in the ICU and the Neurocardiogenic Syncope I have had since college that had been under control until my hospitalization.  The cardiologist believes I will make a full recovery and that it will just take time for me to return to "normal."  My blood tests this past week also showed that everything has returned to normal limits, which occurred much faster than expected, and we are grateful.  The only outstanding concern is related to a new brain lesion found when a CT Scan was done while I was unresponsive.  I have followed up with my neurologist about it who wants more MRIs done, but we are not in a hurry to follow up on those tests for now.

Meanwhile, during these crazy months, there's Tim and David, who are just trying to survive and cope with all of the drama.  Tim has has his own various battles to fight including trying to keep up with his work at the office especially when needing to miss work due to Josh's or my needs.  Despite a difficult and interrupted work schedule, he had his best year yet in growing his business.  We are grateful for God's goodness in that!  Tim has also had to juggle for this past month his own daily responsibilities while picking up many of my own responsibilities since I have been too weak to do much and have spent a lot of my time resting on the couch or in bed.  We have been grateful for our church family and other friends who have helped us greatly in providing meals during this difficult time.

We have thanked the Lord so many times for David this year.  His early years struggling with failure to thrive, his immune disorder, and subsequent illnesses and antibody transfusions have helped make him the resilient eleven year old kid that he is today not to mention the hardships of being a brother to someone with Autism and other mental health struggles.  David took each thing in stride with very little complaints, yet we know how much he is struggling inside and how he fights to bottle it up.  Seeing him struggle with depression and anxiety symptoms was difficult, and we increased our efforts to help him work through his struggles.  On top of that, he began middle school this year as a sixth grader and experienced insane amounts of school work that even overwhelmed me as his mother.  He has had to struggle through a hard school year this Fall while dealing with so much drama in his household, and he remains resilient!  We see evidence of his faith growing.  Struggles aside, we have also seen David continue to blossom in his Taekwondo abilities, and David moved up into a full sized violin.  Being faithful to our promise, we purchased him his very own full sized violin, and we all enjoy listening to him play.  David had the privilege of playing very last minute (less than a week before the concert) in his school band in the Spring and also performed a violin solo during the concert.  In December, he had the privilege of playing his violin in the Concert Band (made up of 8th-12th grade instrumentalists from his school and another local Christian school) even though he is not in Band at school.  He was given a little more notice this time but still had one month less to prepare than the rest of the students and didn't have the twice weekly rehearsals like they had.  We love seeing David shine and use his abilities from God to bless others.

Josh is now thirteen years old, and he is doing well at the new residential treatment facility and has been there now for almost one month.  We are seeing signs of God at work in his heart and his life.  He is thriving in the highly structured environment that the facility provides and is enjoying being able to be back at his special school he had to leave when he got transferred to the first residential treatment center.  We pray that this time away will be a growing experience for him and will help him to be more stable and able to function at home and in the community to help him thrive.  He remains an animal-lover, and his cat and guinea pigs continue to be one of his greatest loves.  We look forward to when we can have him living at home with us again hopefully sometime in 2018.

My back injury has made me rethink my line of work and my future as a nurse.  I have began to look once again at options for becoming a midwife and have increased the number of clients I have as a doula.  I don't know what God has for me, but I am seeking His will and walking through the open doors He provides.  I am also trying to figure out how to increase my business of wellness coaching and essential oil education to be able to better serve my clients and grow my client base to help people live more natural and healthy lives.

Tim will be taking on more responsibilities at his office this coming year as his dad starts to turn over parts of the company to Tim.  He is excited about the increased responsibilities and the challenges to grow himself and his company that they present.

As I close, I don't want to leave you thinking that 2017 was all doom and gloom for the Russell family.  As difficult and trying as it was, God has wondrously carried us through.  He never failed us.  While we don't understand what He is trying to accomplish in the many things He has ordained for us to go through, we know that He is working all of these things out for our good and His glory.  His sovereignty over our lives is a comfort to us, and the circumstances has helped us to grow our faith and dependence on Him.  I leave with you Scriptures about God's sovereignty over our lives.  May they be a comfort to you as they have been to us, and may you see God's good work in your life as you enter 2018.

1 Chronicles 29:11-12 (NIV)  "Yours, Lord, is the greatness and the power and the glory and the majesty and the splendor, for everything in heaven and earth is yours. Yours, Lord, is the kingdom; you are exalted as head over all. Wealth and honor come from you; you are the ruler of all things. In your hands are strength and power to exalt and give strength to all."

Job 42:2 (NIV)  "I know that you can do all things; no purpose of yours can be thwarted."

Psalm 135:6 (NIV) "The Lord does whatever pleases him, in the heavens and on the earth, in the seas and all their depths."

Psalm 18:30 (ESV) "This God—his way is perfect; the word of the Lord proves true; he is a shield for all those who take refuge in him."
We enjoyed the time we were able to have as a whole family this Christmas Eve when Josh was allowed to come with us to celebrate Christmas with the Russell side of the family for a few hours.  

Sunday, December 24, 2017

Sharing in the Sufferings of Christ at Christmas

Sufferings of Christ at Christmas? Yes, you read that right!  We all get caught up in the joy of Christmas, that most of us--me included--don't tend to think about the suffering and sorrow that occurred on that first Christmas.  This Christmas is a different story for our family, and while the sorrow and suffering has been difficult, it has provided a whole new and refreshing perspective on Christmas for us.

If you have ever lost a loved one and had to go through Christmas without that special someone or struggled with a significant physical ailment or care for a family member with special needs, you too may be able to relate with the sufferings of Christ during Christmas as well.  If you don't fall into any of those categories, it would be healthy for you to contemplate some of these thoughts I'd like to share with you.

Let's set aside the excitement and joy that comes naturally at the thought of Christ's birth because a Savior was born to us giving us the hope of eternal life.  Instead, let's think about what God Himself experienced that first Christmas!  Think about it:  Jesus--God in flesh--gave up the comforts of heaven, the presence and fellowship with His triune Godhead to  physically dwell with humanity on this earth.  He left His exalted throne in heaven to lie in a lowly feeding trough.  His first breath on earth brought him the smells of animals and hay.  He knowingly laid aside the right to be worshipped as God to be rejected by the people He created and came to save.  He came to this earth knowing He had to suffer and die because He was the only rescuer of our souls.  Leaving heaven, a place where there are no tears, pain, or disease, He came to this earth to experience sorrow, heartbreak, physical and emotional pain, and sicknesses just like any other human being.  God the Father sacrified His own Son, and that sacrifice began that first Christmas.  There had to be heartache and sorrow for Mary as she held her precious baby in her arms knowing the prophecies of the prophets and what Gabriel told her.  Instead of the joy of your precious baby, there was a shadow of the suffering her baby would experience on her behalf. Eight days after giving birth to her baby, she was reminded of that with the prediction of Simeon in the temple.  Are you starting to get the picture?

Paul in Philippians 3:10 says, "I want to know Christ and the power of his resurrection and the fellowship of his sufferings..." We are getting a new perspective in the fellowship of his sufferings this year.

Our family knows suffering, and this year has been full of it -- more on that in my next blog post.  If you heard about our significant trial over Thanksgiving, you know that suffering has been very recent and that it continues as I continue to undergo tests and see specialists as we try to figure out how to get me back to health.  Having missed Thanksgiving, I wanted Christmas, which is also my favorite holiday of the year, to be extra special.  However, no matter how much I prayed and tried to feel better and made plans for Christmas, all of our usual traditions and special family times were missed or fell short of usual expectations because some days, I could barely get off the couch or out of bed.  As I type this, I am viewing our 1/3 of the way decorated Christmas tree that I so desperately wanted to see finished, and it's Christmas Eve!  Christmas shopping? -- still not finished.  We got the essentials done for our Christmas get together with Tim's family today at least.  I finished that on Friday, and we got the remaining few gifts for our sons in the mail yesterday. 
Our 1/3 decorated Christmas tree

Christmas day is a special time to be together as a family, and here, as we prepare for tomorrow, we have our oldest living at a residential treatment facility due to issues with puberty conflicting with his Autism and Bipolar, and our youngest is spending the night at his grandparents' house so that Tim and I can go up and visit with our oldest for two hours on Christmas.  We are grateful that he was allowed to join us for the Russell Christmas get together for eight hours today! That was a blessing!  Christmas is not feeling like Christmas.  I don't even get to enjoy participating in all of the usual festivities because being up and around causes shortness of breath and chest pain and fatigue.  Joy and excitement and motivation to celebrate? - that's a bit lacking this year!
Our only family picture from today

We have been reading through Paul Tripp's Advent devotional called Come Let Us Adore Him that a sweet friend gifted to us. It has been a blessing and encouragement to us in more ways than one. Paul Tripp brings out the sorrow and suffering of that first Christmas which really resonated with me and encouraged me that I can still experience Christmas and even experience it in a deeper way than I ever have before. Paul says, "The Christmas story reminds us that hopelessness is the only door to true and eternal hope...It's true that hope isn't a thing; it's a person, and his name is Immanuel. Celebrate hope this Christmas" (Tripp, p. 93).

I heard someone say just tonight that you can't experience true joy until you've experienced true suffering.  That is so true.  Despite our current suffering, we do have joy that this is all temporary and that we have a sure hope of eternity with God all because Christ was willing to come to this earth to suffer as a baby and grow up only to die for our sins.  Because of His suffering that started that first Christmas, we can look forward to no more suffering for all of eternity.  His suffering brought us hope!  As we suffer, we cling to that hope, and joy bubbles up as a result.  Because of His birth, God can turn our mourning into dancing lights; He can wipe away our tears; He can be our God of all comfort; and we can enjoy His peace that surpasses all understanding.

This Christmas, we find comfort in our sorrow, we are knowing Christ in a deeper way in His sufferings, and we still can celebrate the hope of what His birth means to us. It may not be a "Merry Christmas," but it remains a HOPE-filled Christmas!

We wish each of you a Blessed and Hope-filled Christmas!

Monday, December 11, 2017

Coming Back from the Brink of Death

On Wednesday, November 22, 2017, I had to have an urgent, simple, outpatient surgery.  I was discharged that afternoon and cleared by the surgeon to travel up to my parents' house as originally planned for our Thanksgiving holiday.  Little did I know that our holiday plans would drastically change within a matter of hours.  As we began our 2.5 hour journey by car, I was in pain and nauseated--something my doctor said would be a possibility and had instructed me to take Toradol for pain and Zofran for nausea.  Because I wanted to make the car ride as comfortable as possible and given my current symptoms, I chose to take 1 Toradol and 1 Zofran.  Instead of getting better as the journey continued, I got worse.  By the time I arrived to my parents' house, I was feeling terrible.  It was all I could do to sit on the couch and be still.  As the night wore on, I began to feel like my head was in a fog.  I knew something was wrong but didn't have enough cognition left to figure it out.  Twice, I asked my husband what was wrong with me which befuddled him, and he just reminded me I was tired from having surgery that day.  Shortly after that, I lost all conscious awareness and memory.  My husband claims I mumbled responses to a few more of his questions to communicate basic needs, but I have no recollection of any of these discussions.

Tim carried me downstairs to our awaiting bedroom and put me to bed.  At 1 a.m. on Thanksgiving Day, Thursday, November 23, I screamed a "bone-chilling, blood-curdling cry" that will forever be etched into Tim's memory and made him jump out of bed and turn on the light.  He found me in a full Grand mal seizure.  Tim managed to lower me to the floor to prevent me from falling out of bed and put me on my side as I foamed at the mouth with blood running out the side of my mouth thanks to my biting my tongue.  The seizure lasted about 90 seconds according to Tim.  Because I am the one who makes the medical decisions in the house, Tim decided to wait for me to wake up to ask me what we should do.  I never woke up.  By 3:00 a.m., I had vomited all over myself.  After the second vomiting episode, Tim was really starting to get concerned, but was too afraid to leave me to go up 2 floors to awake the rest of the household.  Just before 6, David awoke, and sensing something wasn't right went downstairs to find Tim and me.  Tim hurried David to wake up my parents to let them know we needed to go to the hospital.  That started a flurry of activity as preparations were made for my dad to drive Tim and me to the hospital 20 minutes away in Scranton.  After another vomiting episode in the car, we arrived at the hospital where the real urgency quickly became evident to all.

I was whisked off to Trauma 1 and pounced on by many specialists.  I was unconscious and unresponsive.  However, I had a lot of meaningless movements that showed agitation and inhibited medical care making medical intervention difficult.  I was injected with Versed, a sedative, to assist the staff in getting blood drawn and an IV line in.  I was given a rating of a 7 in the Glasgow Coma Scale which falls in the severe brain damage category.  My pupils were not dilating or responding, I had no signs of cognition, and I had severely abnormal flexion of extremities to give you a small glimpse of how bad it looked.

Due to my depressed mental status and agitation, the decision was made to intubate me and put me on a ventilator.  I was also further sedated in order for a CT scan of my brain to be done to check for a brain bleed (thankfully, the CT scan showed no brain bleed).  My preliminary blood tests came back with the most alarming result showing my Sodium level to be 121 which is dangerously low!  My EKG also showed some issues going on with my heart which isn't a surprise with low sodium, and I was placed on a heart monitor.  At that point, the doctors were thinking it was too late and that I wasn't going to make it, but they made every effort to get me as stable as possible.  The parish nurse was called in to say a final prayer over me.  The doctors began to treat some other electrolytes out of whack and get me hydrated.  Tim said at one point, I had 4 usable IV sites in my arms and had 3 IV sites being used at the same time to get meds and IV solutions into me.  I also had an Nasogastric tube (NGT) down which they were using to get electrolyte tablets into my stomach.  Once I was stable, they transferred me to the ICU (Intensive Care Unit).
My ventilator

I had a foley catheter inserted into my bladder to keep my bladder draining, and thankfully, the thermometer gage on it alerted the staff to a quickly elevating body temperature.  They discovered I had aspiration pneumonia from aspirating on my vomit, so they quickly responded with IV antibiotics.  Tylenol was given via NGT and a fan was brought in to get my temperature down.

As the hours went by, and I remained alive, and my sodium levels started to increase, the thinking turned to maybe I will survive, but will I be permanently brain damaged or will I ever wake up or will I remain in this vegetative state?  I also continued to be very agitated and was allegedly pretty persistent in trying to pull out all of the many tubes and wires going into me.  While I was intubated and breathing on a ventilator, I had to be restrained in order to keep me from pulling the breathing tube out.  Tim claims that didn't stop me from trying to slide my body down so that I could try to reach the tube with my tied up hands anyway.  Who knew I could be such a fighter when unresponsive??? As the day wore on, I passed a spontaneous breathing trial and was maintaining proper oxygen levels, so I was weaned from the vent and extubated and placed on an oxygen mask.
Hand restraints to keep me from pulling out all of my tubes
Breathing on my own but with an oxygen mask

In the evening, my parents brought David to see me.  He sweetly sat by my bed and held my limp, unresponsive hand while I continued to lie there with oxygen going in via nasal cannula by that point.  As the sun went down, I got more and more agitated, so David couldn't stay at my side any longer.  He was such a trooper through the whole, scary ordeal.  [He won't talk about how he is feeling after going through all of that which concerns us.  We pray he will open up when he is ready.]
Overnight Thursday into Friday, I was taken off of oxygen completely
Note: David wanted to help calm me down while he was with me and did my hair.  Do you like my hair dew?
Holding steady

I finally had to be sedated again to keep me calm, and Tim entered another sleepless night waiting at my bedside praying that I would wake up.  Sometime early Friday morning, I woke up for the first time.  I was very groggy and pretty confused.  I was shocked to learn that I was in the hospital then succumbed to sleep once more.  Later that morning, I woke up again to relearn I was in the hospital, discover that I was in a hospital in Scranton (for a while, I couldn't figure out how I had even got up there since I didn't remember the drive up to my parents' house Wednesday night at first), and then I felt panicked when I learned I was in the ICU!  I was also disheartened to learn that I had completely missed Thanksgiving!  It took a few more periods of sleep and being awake before I learned the whole story of how I got there.
Sleeping peacefully after having become responsive once again

By the afternoon, I was allowed to get out of bed for the first time.  It set off the heart alarm making staff come running, but it felt so good to get up.  A physical therapist and occupational therapist later came by to help me walk a little bit for the first time.  I learned a new meaning of baby steps!  I had a visit from one of my aunts and then my parents and sister and David.  I am sure David was so happy to see me awake, and it was so good to give him a hug and truly hold his hand.
Working with the PT and OT to walk for the first time
My second walk was with my handsome date as my escort

I was so much better come late that evening, the doctor decided to move me from the ICU to the main floor.  Ironically, I ended up being moved to their pediatric unit.  It was very weird for me, a pediatric nurse, to be a patient in a pediatric unit!  I continued to set off the heart alarm each time I got up, but at least then, only one person came running.
Saturday morning in the pediatric unit
Enjoying our visit with David

On Saturday, I was feeling stronger and enjoyed a visit from David, my parents, sister, and brother.  We were then given the good news that I could go home that evening if my last blood test results came back fine and after I had a brain MRI to follow up on the findings of the CT Scan.  [Back in 2011, I was diagnosed with a brain lesion.  Cancer, Multiple Sclerosis, Lupus, and a parasite were all ruled out, but the four neurologists I did see couldn't figure out what it was.  The decision was made to repeat the MRI yearly and follow up with the neurologist I chose to be my treating neurologist.  After two subsequent yearly MRIs showed no changes, the decision was made to repeat the MRI every few years.  My last MRI was in 2013.  The CT scan revealed another lesion and changes to the previous lesion, and the MRI in the hospital that day ended up showing definitive changes.  I follow up with my neurologist this coming Wednesday to find out her thoughts on the changes and to discuss any long term damage to my brain that may have occurred from the dangerously low sodium levels.]

At 9:30 on Saturday evening, I was discharged following the completion of the MRI.  I arrived back at my parents' house by 10:00 to get settled into bed for the night.  The next morning, we woke up, packed up the car, and left to head back home swinging by the Lancaster area to pick up Josh for a home visit from his residential center he had been at for the month.  Once we were home, I got settled on the couch so I could enjoy seeing my family together and be able to interact with them as I was able.  It was a happy day despite the fact that I was tired and weak.
Settled at home and happy to spend time with Josh

So many people have asked what happened since all of this had been so sudden and unexpected, so I thought blogging about it would be helpful to give a thorough recounting and perhaps save me or Tim from having to rehash it several times a day.  There is still so much more to the continuing story, but perhaps that will be for more blog posts to come.  We are very much still trying to process all that has happened and figure out what God is trying to teach us.  We remain confident that God will work all of this out for our good and His glory and are praising Him for the miracles He worked in my life the two days when I walked on the brink of death unknown to me in my unresponsive state.  One other thing we are confident of is that God's not finished with me on earth yet!  I still have work to do!

Monday, August 14, 2017

Learning to Let it ALL Go

In approaching almost the 13th year of being a mother of a special needs child, you would think I would be done giving up all control of my son to my capable and loving Savior and that I was done giving up all of the circumstances around his needs to the Author and finisher of my faith.  Apparently, there are ways I haven't given up that control, and God is digging deeper to reveal the areas of my son's life and my own desires that I am still clinging desperately onto instead of entrusting them to my son's and my Maker.

I learned to give up my goals and dreams of serving God as a missionary full time on a foreign field and embrace the full time mission field ministering to my children and other special needs parents.  I learned to give up the anticipation of my son hitting his normal childhood milestones and instead celebrate the small things like not having a melt down in a community outing or appropriate use of coping skills when upset about a non-preferred directive.  I learned to accept that I can't enjoy the pre-teen years when your child becomes more independent while not needing constant supervision but that I can love on my son in more tangible ways and still have him be okay with mom rather than be embarrassed by her.  I learned to accept that I can't relax and spend more time doing various hobbies like my friends but enjoy the satisfaction that I am doing all that I can to make my son's life just a little bit easier.  I learned to give up the dream of seeing my son participate in team events and celebrate the successes of having a positive social interaction that only required a small amount of adult intervention.  I learned to accept his Autism diagnosis and all of the other diagnoses that have been added throughout the years and embrace the unique and perfect way in which God made my son.  I accepted all of this and gave it all to God along the way.  That's enough, isn't it?

Sadly, over the last 2 months of many set backs and discouraging battles, as the few rays of hope have started to diminish, God had to uncover yet another thing I needed to give up: my son's future: his spiritual walk, the outcome of his teen years and progression into adulthood, his happiness, his struggles.

The last 3 years, I have worked relentlessly to make my son's future and development as successful as possible.  I've stayed current with all of the latest research, behavioral interventions, and natural solutions to give him the best future possible.  We have made so much progress and paved the way for the best outcome possible.  I even got to the point that I once again had a glimmer of hope that he could even get married some day.

Then, it all came crashing down!  Puberty raised its evil head wrecking havoc on his body and causing many hardships and setbacks just as the doctors had predicted.  We coasted through the beginning thinking we were going to skip our way past the foreboding warnings of the doctors.  It looks like we won't be so lucky after all.
As we moved into the reality of what the next several years would look like, I began worrying about his future.  I don't want him to become another statistic of a bipolar youth who kills another person or himself in an angry, illogical rage.  I don't want him to get in trouble with the law and end up in a juvenile detention center.  I don't want him to reject and curse God and flee from the ways in which we brought him up.  I want to make his teen years as easy as possible.  I want him to be able to successfully enter the work force and make something of himself. I WANT...

As my son struggles to maintain control of all circumstances in his life even if it means fighting his way into more and more consequences and lost opportunities, I am struggling to give up the control of my son's future.  As he was formed in my womb, God had his days numbered and his course set.  I can't control how God gets a hold of his hurting and fragile heart.  I can't control whether his teen years are easy or frighteningly difficult.  I have no control because I am not God.  This has become a frightening reality to me the last couple of weeks.  It is so hard to give up control.  To sit back and let God be God and do as He sees fit in my son's life and heart.  It's not that I don't trust God and His sovereignty.  It's the fear of HOW God will accomplish His purposes.  My son has already had so many hurdles to cross, and I don't want to see him struggle anymore.  God doesn't promise that life will be easy but that He will work all things for good.  That has to be enough.

Once again, I find myself learning and battling to let go.  Just as I have let go of the other things, I have to do that with my son's future.  It's just a whole lot harder than I had expected.  Abraham had to give up all control of his son Isaac's life and be willing to sacrifice him in obedience to God.  Hannah gave up control of her son Samuel's life to give him to the ministry in the temple. Mary had to give up all control of her son Jesus' life and let him to his Heavenly Father's work even if it meant going to the cross.   It's time I learn to follow in their footsteps and give up all control of my son's life and his future.  It won't be easy, but it is necessary.  Once I do, the rays of light will break through again because the only place for my son to be is in the good hands of the Shepherd of my son's heart.  If I can do that, it won't be all doom and gloom, right?

Saturday, March 25, 2017

It Takes a Village to Raise a Special Needs Child

The last two weeks have been utterly horrific and ones that I pray we will never have to repeat.  Josh came completely unglued emotionally leading to terrible and horrifying behaviors.  It was like reliving the unstable days of years past when his bipolar was not well controlled.  He has been stable for the last 3 years, but since we decided to do a family missions trip because Josh was so stable, it seems as if Satan is pulling out all of the stops to get us to change our mind.

We spent the last week and a half deliberating about whether or not to hospitalize Josh.  It was the most agonizing decision to make knowing he was completely out of control and out of our ability to control yet knowing that if we send him back to the hospital, it will be yet another traumatic experience for him complicated by the fact that the hospital simply drugs the kids to make them calm, keeps them in front of a TV screen all day to keep them under control, and feeds them all of kinds of food that we do not put into our bodies not to mention the gluten and refined sugars that would be served that are huge triggers for Josh and his mood/behaviors.  It was a no-win situation, but we were quickly running out of other options.

Throughout this struggle, we had dear friends from church who regularly checked in with us, sent me encouraging texts including reminders of helpful Scripture passages, and who came at a last minute's notice to allow us to get out of the chaos for a quick breath of fresh air and a chance to celebrate Tim's passing of his Certified Financial Planner exam.  I was encouraged by a phone conversation I had with one of Josh's youth leaders who was concerned about Josh and his behaviors and wanting to know how the youth leaders can help him be more successful in youth group then praying with me that God would help Josh through this difficult time and return to stability.  David's Christian counselor who had done a joint session with the boys the last week and could tell Josh was coming undone sent me an email to check in and see how we were doing and see if she can help in anyway.  Josh's school was extremely concerned and offered their help and support to us and did all that was necessary to help keep him under control as much as it was possible.  Josh's psychiatrist saw Josh on an emergency basis then gave me her cell phone number so that I could contact her at any time (and she walked with us through the battle of whether or not to hospitalize several different days over the last two weeks).  She is also a blessing in that she doesn't always see medication as the answer to problems.  Josh's nutritionist responded to my email asking if she had any suggestions for ways we can help Josh by offering her chiropractor husband's services before his office hours began to do some specialized neurological adjustments to help Josh, and as he did so, he spoke the Gospel to him.  The nutritionist then offered to squeeze Josh into her busy schedule to see if anything from a nutritional and supplemental standpoint could be done to help him.  We had another friend who still willingly came in the midst of the chaos to watch the boys so we didn't have to cancel our plans to go to a concert in Philly that we had bought tickets for back in December.  I had another friend who deals with similar drama in her household come alongside of me and check in with me all while being an encouragement just through her mutual understanding.  We also had many friends and family members praying for Josh and for us, and prayer is just what all of us needed!

I can't imagine having to do these last two weeks alone!  I am thankful for the village God has built up around us to stand with us in trials and support and encourage us.  Had it not been for the support of those faithful villagers, I am not sure what things would be looking like right now.  God through His goodness and providence has helped us have all that we needed to walk through this fire.

With the sudden return to stability Josh experienced yesterday (most likely due to the prayers, neurological adjustment, and supplement changes), we are more than ready to take deep breaths of fresh air.  However as I do so, I am praising God for our village and the way He used dear people to help us get to the other side.  Raising a child with special needs is not for the faint of heart, but it's also impossible to do alone.  It truly does take a village to raise a special needs child, and I am grateful that God has not left us alone!

Friday, March 10, 2017

Letting Faith Rest in the Power of God

As our date of departure for our family missions trip draws ever nearer, and the final plans are made, I found myself feeling more and more nervous about bringing our oldest on the trip with us due to his continued mood instability.  I feared for his safety with the way he was acting not to mention that I worried about how his behavior would be looked upon by the people in that culture.  I was praying that God would help him to become stable again, but it seemed that each day, there were only more problems rather than fewer.  I began doubting our decision and whether or not God wanted us to bring our son with us.  On top of that, I wrestled with the fact that the country we were headed to had fewer than 1% of the population who were Christians and there really wasn't a model for what a Christian family should look like in that culture except what the pastors and their families are presenting as they blaze the trail raising Christian families.  Part of my vision for the trip was that we could let the people there see what an American Christian family looks like.  However, with the way our oldest was behaving, that idea would be a disaster because we'd only show them how truly broken we really are.  I worried about showing that side.

I expressed my concern in a discussion with Tim who stated that it's not our mission to present to them a "perfect" Christian family.  It's our mission to be with them in body and Spirit encouraging and ministering to each other.  That's what a partnership is all about.  Through the ministry of one another, God builds His Church.  I was thankful for Tim's insight, input, and decision that we are going as a complete family no matter what.

The next day, in reading an excerpt from a meditations book written by missionaries with Josh, I had to smile at God's providence at the passage of Scripture and following reflection about that passage because it was just what I needed to read and meditate upon in my heart.
I Corinthians 2:1-5:  And I, when I came to you, brothers, did not come proclaiming to you the testimony of God with lofty speech or wisdom. For I decided to know nothing among you except Jesus Christ and him crucified. And I was with you in weakness and in fear and much trembling, and my speech and my message were not in plausible words of wisdom, but in demonstration of the Spirit and of power, so that your faith might not rest in the wisdom of men but in the power of God.
God has this trip already worked out.  He has my son's stability under His control.  He's the one who called us to do this trip as a family, and He's the one doing amazing things to make this trip possible.  He has called us to be lights and bring the Gospel to all peoples making disciples.  We do that by presenting Christ in our brokenness.  We don't want to be making converts of the Russell Kingdom.  We want to make converts of Christ's Kingdom.  What better way to do that but through our own brokenness and desperate need for a Savior.  May these dear people we fellowship with see Christ and Christ alone in our broken lives and may all of the honor and glory go to Him who sustains us and gives us the strength to finish each day through His great and mighty power.

Interestingly enough, as soon as I embraced this new way of thinking, things calmed down in our household, and our son has seen the most stability yet since things got rough in December.  Perhaps God just needed to get my attention and teach me a lesson and grow my faith!  To God be the glory!

Tuesday, February 28, 2017

Encouraging Thoughts to Help You Carry On

Being a caregiver for a special needs person is not for the faint of heart.  It can be exhausting, emotionally draining, and often, it can seem repetitive and rewardless.  It's been twelve years since we started on our special needs journey with our first son and 10 years with our second son.  While we have seen remarkable changes over all of those years, when we are in the day in and day out toil, it often feels as if our efforts are in vain.  The day to day progress seems nonexistent and the step back for every two steps forward is disheartening.

Of late, I have become weary of the same conversations over and over again helping our son with Autism know how to appropriately act in various social situations and when given non-preferred directives.  I feel like a broken record on a daily basis, and it seems no matter what I say or do or how encouraged I am after a conversation, my time and energy spent in helping my son is in vain because either the same day or the next, he ends up doing exactly what we discussed he shouldn't do.  It can be infuriating to say the least.

It is times like these that I am so grateful that I am not on this journey alone but that I have my great God and Savior right there with me encouraging me forward, strengthening me to finish each day, and carrying me when I can no longer walk on my own.  Time spent in God's Word and in prayer  refreshes and nourishes me daily.  God-centered music daily ministers to my heart speaking God's truth into my mind.  Conversations with people who love and accept me and my family the way we are, who are willing to walk with us in our not-so-pretty daily lives, and treat us without judgment help my burdens to not be so unbearable and help me to not feel so alone.

If you know someone who cares for someone with special needs, I encourage you to reach out and be a blessing.  Don't judge.  Get involved in their messy, daily lives and love them with God's love.  Send an encouraging note with an encouraging Scripture verse or passage.  Don't ask "How can I help?" but instead ask "When can I come over and help with housework or care for the kids or bring over a meal?"

Sometimes, when struggles pile up, it's easy to get overwhelmed and discouraged.  Necessary daily tasks become repetitive and meaningless.  Sometimes we need a reminder that the mundane is not for nothing and that we are involved in Kingdom work.  After all, a large part of Jesus' ministry on this earth was ministering to those with special needs.

Some encouraging Scripture passages that help me keep going include:

"Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights" - Habakkuk 3:17-19.

"The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail" - Isaiah 58:11

"I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.” The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord." - Lamentations 3:19-26

Some songs that have really ministered to me in my hardest of days include:

"Blessings" by Laura Story

"He Will Hold Me Fast" by Keith & Kristyn Getty

"Grace" by Carolyn Hamlin

"Day by Day" a hymn written by Lina Sandell and translated by A. L. Skoog; music by: Oscar Ahnfeldt

No matter how hopeless a situation, our hope rests in God alone.  He is our strength and salvation.  He is our sovereign designer who is working all things together for our good and His glory!

Sunday, February 19, 2017

No Matter the Cost

As our family missions trip draws ever nearer, we are busy making plans and ironing out details and making reservations.  We are excitedly sharing our plans and desires for our trip with friends and family and asking for prayer and financial support.  We are also, more importantly, trying to mentally and spiritually prepare ourselves for the weeks ahead and the actual trip as we know that we "do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places" (Ephesians 6:12).

In my own personal preparations, I just finished reading the book The Insanity of God: A True Story of Faith Resurrected by Nik Ripken, which has been a HUGE blessing to me personally and a significant spiritual growth stimulator in my own life.  This book has incredible stories of Christians who suffered through significant persecution yet kept their faith and had God do amazing work in and through their lives and/or deaths. I have been reminded through these stories and lessons the author learned through his conversations with these believers that God doesn't call us to go and make disciples to areas that are safe.  He simply calls us to GO (Matthew 28:19-20).  At the same time, Jesus warned his disciples and us that the world will hate us and persecute us (John 15).  We are reminded by the Apostle Paul that we are crucified with Christ and no longer live but instead, Christ lives in us (Galatians 2:20).  He reminds us that we should desire to "know Christ and the power of his resurrection and the fellowship of his sufferings, becoming like him in his death" (Philippians 3:10).

When we decided to do this family missions trip, we knew the risks we would be taking in going to a country suffering from unrest and where our dear sisters and brothers in Christ suffer various forms of persecution for their faith.  One of the churches we will be worshiping in is on terrorist group hit lists.  In a country with less than 1% Christians, it can get very lonely for believers, and the temptation to lose faith is great.  On the flip side, the opportunity for faith to grow and be ever resilient is greater for them than it is for us here in the comforts of our freedoms and our assumption of safety.  We want to go and minister to and encourage these dear saints.  At the same time, we hope to be challenged spiritually by their faith and learn to be ever faithful in the midst of suffering.  We want our fellowship with the believers to be a time of edification for them and us alike as we bear each others burdens and sharpen one another helping each other to be more like Christ so that through our lives more people will be led to Christ.  Isn't that the Gospel in action?

Some of our well-meaning friends and family have asked us whether or not we are truly being wise and thinking about our boys in choosing to take them into a dangerous area.  While we appreciate their care and concern for our family's well-being and safety, we have to follow God's calling in this area.  We have discussed with the boys the risks and allowed them to have the final say in whether or not they think it's worth it, and they are 100% behind this and so very eager to go.  We truly believe God has called us to do this, and He has been confirming this call in so many different ways (some even miraculous!) since we made this decision.  God hasn't called us to do this to put us in danger.  He has promised to be with us "always, to the very end of the age (Matthew 28:20).  Our lives (and our boys' lives) are not our own -- they have been bought with a price, and hence, we must glorify God with our bodies (I Corinthians 6:19-20).  Our lives are nothing to us, and like Paul, our desire is to finish the race and complete the task the Lord has given us - testifying to the Gospel of God's grace (Acts 20:24)!  We have been reminded by a dear friend from this area that we are truly "bullet-proof"!  No bullet will take our lives or wound us unless it was God's ordained "bullet" because His work in us on this earth is complete or He has greater plans for us.

Are there fears and concerns?  Sure, we are, after all, human!  What's greater is God's call on our lives to take up His cross and follow Him and carry out the Great Commission wherever He leads us - right here in Elverson, PA right now and in other places near and far away as He directs our steps.

This great God whom we serve sacrificed His own Son's life through a terrible, painful death on the cross so that our sins could be wiped clean, and we could once and for all have right standing before God and a home in His presence for all eternity.  He intricately formed us in our mother's wombs giving us the breath of life and ordaining all of our days.  He made us His children when we were filthy in our sins unable to desire Him.  He has walked with us through our various struggles in this life and has never failed us.  He comforts us with His Word and His church universal.  He strengthens us and showers us with His grace to survive each day He has planned for us.  This is love too great for me to comprehend!

As Isaac Watts penned in his great hymn "When I Survey the Wondrous Cross," "Were the whole realm of nature mine, that were a present far too small; love so amazing, so divine, demands my soul, my life, my all."  No matter the cost, I give my life and the lives of my boys to our great God!  Here I stand.  I can do no other!

Wednesday, February 15, 2017

The Greatest Valentine

As I left the house yesterday morning on Valentine's Day heading to work, I enjoyed the Valentine God sent me in the form of a beautiful sunrise.  The sky was painted in the most brilliant and vibrant pink colors.  As my eyes drank in the beauty of God's Valentine for me at that moment, it made me think about how God has given me the Greatest Valentine in the form of His precious Son and all of the lavish gifts He has given me since His Son.

His love for me was poured out as Jesus' blood ran down his body as He hung on the cross innocent of any wrong-doing but bearing my filthy sins on His body and taking my punishment.

His love is poured out for me when He sees me as holy and just because He sees me through His victorious and Holy Son.

His love is poured out for me on a daily basis as he sovereignly controls my daily events to make me more like Him.  Even the mundane tasks that demand my time and attention are a result of His love.

His love is poured out for me through the many blessings He gives me when I deserve only punishment.

His love is poured out for me in the grace He gives me as I walk through the waters and the fires of life's trials that only make me come out more refined as gold.

His love is poured out for me when I daily open His Word - His Love Letter to me - to hear from Him, learn more about Him, and grow to be like Him.  Yesterday, I stumbled upon the verse Zephaniah 3:17 and was awed by the demonstration of love in it.  As God, He has every right to damn me to eternal hell, but yet, instead of rebuking me, He chooses to REJOICE OVER ME with SINGING!  After all of the countless times I have held my precious boys close to my heart and sang over them to comfort them, to make them happy, to help them know they were loved, my great God does the same thing to me!  What an amazing thought!

His love is poured out for me when I spend time in prayer fellowshipping with him, praising Him, and lifting requests before His powerful throne of grace.

His love is poured out for me through the love of my husband who works so hard to provide for me, pitches in around the house to make my life easier, and loves our boys.

His love is poured out for me through my two boys as He molds and shapes their hearts, as they give me hugs and kisses, and as I clean up after them.

His love is poured out for me through the joy I get from music whether it's playing the piano, singing, helping my boys with their instrument practices, or simply listening to worship music.

His love is poured out for me through the friends who take time to notice, to pray, to spend time with me, to lend a helping hand.

His love is poured out for me through the chances to be the Gospel in someone's life and to see the universal church grow and flourish.

Yep, I have the greatest Valentine ever, and He is my great God!  The most amazing and wonderful thing is that He can be yours too!  If He is not already your Valentine, make Him yours today!  I'd love to help you do just that if you don't know how!