My Struggles and Blessings of Being a Special Needs Parent - Part 1 of 3

I recently read a blog post by a mother of a special needs child called 7 Things You Don't Know about a Special Needs Parent that got me thinking about my own experience of being a parent to 2 boys with special needs and how that has revealed struggles I have in my own life as well as blessings I enjoy as a result.  I can't speak for other parents of special needs, but I am sure we all struggle with similar things and face similar blessings.  I thought I'd share my struggles and blessings juxtaposed with each other in a 3-part series of blog posts.

Struggle #1:
I struggle with exhaustion - physical, mental, emotional, and psychological exhaustion - nearly every day.  With balancing and keeping schedule of doctor's appointments, therapist visits, weekly transfusions, meetings with the school, using my time and energy to advocate for my son ensuring he gets the best treatments/services possible, defending or explaining my son's behavior to an upset adult or child, having to to check on a child throughout the night who turns blue, hospital visits, seeing progress, dealing with setbacks -- the list could go on.

I feel like I am on an unending roller coaster completely in the dark never knowing where the next turn will be.  Often, the whiplash from it all takes my breath away.  I am thankful that I don't have to check on David in his sleep to make sure he's still breathing anymore, but the unending battles with his immune disorder and continued struggles with his reflux still can be draining.  Between both boys, I administer 21 medicines in a day, and that doesn't include David's weekly antibody transfusions or medicines they need once in a while.  My days are filled with being a nurse to my own kids, trying to avoid meltdowns, phone calls to doctors or therapists (sometimes multiple in a given day), emailing teachers, coordinating my schedule with my husband's schedule, making sure we have food to eat and clean clothes to wear, eating lunch if I am lucky, and, oh yeah, just trying to survive another day.

Blessing #1:
I am blessed with a superabundance of God's strength and grace.  God promises that His grace is sufficient for me (2 Corinthians 12:9) and that He gives His strength in measure (Psalm 68:35, Isaiah 40:29).  My days are so full of busyness and stress that I need extra grace and strength compared to other mothers just to get through my day.  I have never been lacking even when my circumstances make me feel as if I will most certainly drown.  God has never failed me.  When I have been too weak to walk, He has carried me in His capable arms.  I would not be here today if it were not for God's strength and grace.

Struggle #2:
I struggle with loneliness.  It is so easy to feel isolated as a parent of a special needs child.  You don't get to do the "normal things" other parents do.  You often feel trapped as a prisoner in your own home.  If you do get out, it's to take a child to see a specialist or a therapist or go to the school because there is a problem.  I have turned down many opportunities to socialize because I was afraid to expose my immune deficient child to unnecessary germs or I didn't want to chance a meltdown by my son with Autism.  It's easier to hide, but then loneliness is the result.  Even amid people, I feel lonely because I know people really don't understand, and I find it hard to share my struggles and burdens because it's hard for someone who has never raised a child with special needs to truly understand the hardships.  When my son first got his Autism diagnosis, Autism still wasn't very well-known, although it was on the rise.  I had to explain what Autism was and try to explain why my son was acting the way he was even though he looked "normal."  I didn't know anyone else personally who had a child with Autism.  Now, with Autism at epidemic proportions in the U.S., I have several friends who truly understand my struggles which has helped fill the loneliness void to an extent.

Blessing #2:
I am blessed with countless evidences of God's presence in my family's life as He works in each of our lives.  God promises that He will never leave me or forsake me (Deuteronomy 31:6, Hebrews 13:5) and that He will work all things together for my good and His glory (Romans 8:28).  He has done and continues to do just that.  I witness spiritual growth in each one of us as God does His amazing work in our lives.

I see God at work strengthening David's body, protecting him from illness.  We have seen a miraculous improvement in David's health since his last (3rd) surgery.  There is a chance that we will be backing down the frequency of his transfusions this summer if he continues to do as well as he is currently doing.  We see God giving him a heart of compassion and understanding to those around him.  He is quick to bring troubles (his and others) to God in prayer.  We watched God save David from having a dangerous open heart surgery as a baby and have since found out that he most likely will not need surgery to fix any of his 3 heart defects.  We have watched him grow from a failure-to-thrive infant into a healthy, tall boy who is above the 75th percentile across the board for growth and development.  We also have seen him struggle in his school work and then succeed.

In Josh's life, we rejoice in the small things, particularly the things not many people notice.  We've celebrated the first attempt to initiate imaginative play, making eye contact when talking with a person, working in a group, and accurately interpreting another person's facial expression.  In the past year, we have been thrilled to see Josh be able to use his words to express how he is feeling and what he needs in order to cope with a given feeling.  Two weeks ago, I almost did a happy dance in church when Josh asked an adult how his week was after this adult said hello to him.  I am thrilled with the small victories Josh has in controlling his anger and mood instability, when he willingly uses coping skills (sometimes without any prompting) or goes to his calm down spot.  It is encouraging to hear him crying out to God in prayer to help him when Josh can barely keep up with his oscillating moods.

When some marriages fall apart due to the strain of special needs parenting, God has strengthened ours through each fiery trial we experience.  As we draw closer to God, we find that we draw closer to each other. God has given us wisdom in dealing with our boys and has grown us in our patience with the boys and each other.

Finding beauty even in the cold, bleak winter

Stay tuned for Part 2 of 3...

A Year Experiencing the God of All Comfort

II Corinthians 1:3-11³ Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, ⁴ who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. ⁵ For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too. ⁶ If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. ⁷ Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.
⁸ For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. ⁹ Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. ¹⁰ He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. ¹¹ You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.

I feel that this passage is such a perfect summary of how we feel and what we believe.  For those of you who follow our story and pray so faithfully for us, this passage perfectly describes your relationship with us.  We are bound together in life through Christ.

We praise the Lord that He is the God of all comfort.  Although our year has definitely had its ups and downs, God has brought comfort to our hearts and lives in many ways, answering many prayers. We want to share with you some of the comforts God has given us this year.

David

Now 7 years old and in 2^nd grade, David has experienced his first full year of good health without any bacterial infections since his surgery in September 2012.  He was able to successfully come off of his prophylactic antibiotic for the first time in his life in March.  His gastrointestinal system went into shock requiring a month-long course of antibiotics to get his healthy gut bacteria back under control, but now his system is working properly again on its own.  If all goes well this winter, he will be able to start the weaning process of his weekly antibody transfusions in the Spring. God continues to work in his heart and life.  We are excited to see his willingness to use his gift of music with the violin to glorify God. 

Joshua

At 9 years of age and in the 4^th grade, Joshua is thriving and successful in his new school.  We moved in the summer to get Josh into a better school district where he will be supported with his Autism struggles.  His new school has absolutely amazed us with all that they do for him.  As a result, Josh is happy and showing great potential.  While he still struggles with the ups and downs of his mood disorder, we have successfully kept him out of the hospital now for a year.  We have to take each day as it comes and heavily rely on God’s wisdom to make the right decisions for Josh.  He has a loving spirit and wants to understand his environment desperately.  He too has found ways to glorify God through music using his talents for the Lord.

Christine

I celebrated a year in November of dramatically improved health when it comes to my migraines as a result of taking Vitamin B-12 and Magnesium supplements.  I now can experience up to 3-4 days at a time of being pain-free, and when I am in pain, it’s mostly manageable only being severe 1-2 times a month.  My last MRI also showed that my brain lesions are stable and not growing, so now I can wait until 2015 before having another MRI. I enjoy having much more energy now that pain doesn’t daily consume me.  I am still a part-time special needs pediatric nurse, although this year I changed to a better agency.  I am now working for Bayada Pediatrics.

Tim

Tim is growing his financial adviser position at the Life Financial Group and has taken on a more complex role as a result of a training course he has been taking.  His tasks at home have increased significantly with our new home and large property that needs upkeep. On top of that, he is still trying to rent out our Pottstown house, and until he does, he has to maintain that house as well.  He has also enjoyed his role as a den leader for David’s den in Cub Scouts.  As if that's not enough, he continues his work as a deacon at our church all while being a huge help and support to me at home as we parent our children. 

Answering the Call

We have come to significantly know God’s comfort when it comes to His call on our lives to be missionaries.  We have struggled to understand what God is doing with our family since God closed the door for us to be missionaries in Bulgaria.  This year, God has showed us in many ways that He is using us for His Kingdom work on the mission field where we currently find ourselves.  We don’t have to live overseas to be used by God.  Yet, God has also showed us how we can still be actively involved in foreign missions.  We have stepped up our work in the Asia Minor Partnership we have been a part of now for over 6 years.  Tim took another trip to Turkey this past August.  We are praying about taking our whole family over there at the end of this coming summer. 

In addition, God has been opening many doors to missions through the special needs of our family.  Not only are we working to help our home church launch a special needs ministry, but we have been talking with some key people regarding training churches internationally to make the Gospel accessible to ALL – including those with special needs.  As a result, we might be making a trip to Bulgaria this year to help with a special needs seminar in some churches there.  We don’t know what the future holds, but we are excited about the ways in which God is working in our hearts and lives and using our family with all of our faults and struggles for His Kingdom work and His glory.

Thanks for sharing in our afflictions and comforts.  We get through each day on prayer and God’s grace.  We hope and pray that this next year will be a year in which each of you experience God’s unending comfort despite the circumstances in which you find yourself.

In Christ's love and grace,
Tim, Christine, Joshua, and David Russell

Doing the Ordinary

God has been working in my heart the past several months helping me to be content with where He has me in this life.  I just returned late last night from a 3-day Mission to the World Global Missions Conference in Greenville, SC where God sealed the deal in my mind that He has me right where He wants me, and now, not only am I content, but I am humbled and excited all at the same time.

For those of you who have known me for a long time, you know that my heart has always been sold out to missions.  I had God's plan for my life all mapped out ever since I felt His call to missions as an 11 year old girl.  The problem was, once God gave me the call, I ran with the "how" it was going to all work out.  I eagerly looked forward to the day that I could go GREAT THINGS for God as a medical missionary.  I went to college on the fast-track to med school to become a doctor.  I was going to be a single missionary doctor and spend the rest of my life on a foreign field showing needy people God's love.

The problem was that I forgot to ask God how HE planned to carry out His will for my life.  God started working on that revelation when He put my husband Tim in my life during my second year of college.  Marriage upon graduation from college certainly put a wrench into my plans, but I was able to smooth things out deciding I could become a Physician's Assistant as a married woman and serve on the foreign mission field.  While waiting for Tim to finish college, I worked in a maternity ward and got the "baby bug."  At the same time, I was working as a certified nursing assistant, quickly realizing that the role of a nurse was so much closer to my desires of having a relationship with and being able to care for patients, so with the "baby bug" in full force, I quickly figured out that I could go back to school to become a nurse once my baby was school-aged.  That plan got more complicated when I got unexpectedly pregnant with our second child and then found out all of my Pre-Med college credits were expiring and that if I didn't start nursing school just after giving birth, I would lose 12 more credits on top of the 8 I had already lost from expiration.  I started and completed nursing school by the grace of God and became very excited about how God was going to use me to do GREAT THINGS for him.  However, through the years of nursing school, our family world was quickly becoming unraveled as we faced the realization that we had two children with significant special needs.  Despite that realization, Tim and I stepped out in faith that God would provide, and we pursued full-time foreign missions in 2010.

Tim and I quickly became excited how fast we were walking through open doors to finally do the work we felt God had called us to do.  As we pursued joining the missions work in Bulgaria, our world came crashing down, and in a few short months, we had our feet kicked out from under us multiple times from multiple causes.  The special needs of our children intensified, my health failed, and our relationship was challenged.  We felt as if we were collapsed on the ground, incapable of moving, with our heads spinning.  We couldn't believe how fast our lives had done a 180° turn.  The question in my mind: How am I ever going to do GREAT THINGS for God?

Now those of you who know anything about me know that I am a planner.  I like to know well in advance what to expect so that I can have all of my plans laid out in orderly fashion.  All of the sudden I found myself in a situation where I was clueless to what God was doing and where He wanted me to go.  It was a very unsettling place to be and has been since that time.  Even though I continued to trust God to work all things for good in my life (Romans 8:28), I was frustrated by God's choice to leave me in the dark regarding His plans for my life and frustrated about all of the time being wasted for me to do GREAT THINGS for God.  I chose to submit to God, but it didn't mean I was happy about it.

However, despite the sin of backhanded rebellion (I was submitting, but not happily or willingly), God started using me in the ordinary things in my ordinary life.  In different interactions with doctors, therapists, other caregivers of special needs children, etc., God started opening doors for me to share the Gospel through our story and struggles.  Sometimes, it was more my actions than what I said that stood as a Gospel witness.  I began to get excited about these witnessing opportunities.

In addition, with our increasing love for and participation in Asia Minor Partners, a partnership in our favorite country in the Middle East, I began learning the lesson of living in the moment and taking each day as it comes.  With the increasing stress of the issues my boys were facing, I was forced to have to take one day at a time.  My brothers and sisters in the Middle East, due to the instability of their environment and practices of culture, were great examples to me of not worrying about what tomorrow will hold but living for the day that God had given me.  It's not an easy or comfortable place for me to be, but it was necessary.

Now in 2013, our heads are spinning once again, but now for a different reason: God is opening many doors of opportunity for missional/Gospel involvement in ways we never envisioned or dreamed.  God is using the fact that we are stuck here in the States for the time-being to allow us to come along side and partner with mission works around the world.  God is opening doors for us to be a part of helping the Church love and embrace those with special needs helping to make the Gospel accessible to ALL.  God reminded us that we are on a mission field right here where He has us.

Through speakers at the missions conference this week, I was reminded that God chooses to use ORDINARY people through ORDINARY means to do intentional KINGDOM work.  As I reflect back on the course of my life these past few years, I realize the ways in which God was working and using me.  He wasn't using me because I was GREAT.  He was using me because I was ORDINARY.  I am so humbled that God chooses to use me (just an ordinary person) to do His work.  It's not about what GREAT THINGS I can do for Him, but the GREAT THINGS that He can accomplish through little, ORDINARY me.  Now, I stand with excitement and anticipation, being perfectly content in God's will for my life--still not knowing what tomorrow will bring--but confident that He who began a good work in me will bring it to completion in the day of Jesus Christ (Philippians 1:6).