The Cost of Missions

"Then Jesus came to them and said, “All authority in heaven and on earth has been given to me. Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age.” Matthew 28:18-20

Before Tim and I were married, both of us felt called into missions, so when we met and it seemed as if God was leading us to be married, we started making plans to do missions together as husband and wife.  Tim was a Bible major, and I was a Pre-Med major.  We had great plans for how we were going to work as a team on the foreign mission field.  We got married in 2002 in time for Tim to finish his final year of college.  In 2003, we moved to Pennsylvania for him to go to seminary.  I had chosen to not continue on to med school and instead became a Certified Nursing Assistant with the desire of some day getting my nursing degree.  We were full speed ahead for getting to the mission field.

In 2004, we were blessed with our first child.  In 2006, we found out we were unexpectedly expecting our second child.  We were discouraged to have to decide for Tim to drop out of seminary because we couldn't afford to have him continue and be able to provide for yet another baby.  In 2007, I was forced to begin my nursing degree because I found out my science credits were all expiring.  That same year and into 2008, we were overwhelmed by the increasing special medical needs of our youngest and starting to be concerned by some behaviors of our oldest.  In 2009, our suspicions about our oldest were confirmed, and Josh was given the scary diagnosis of Autism.  By the time I finished my degree in 2010, Tim was in full swing of being a financial adviser, and really excelling.  The action of missions was changing, so we decided that instead of having Tim finish seminary, we could do mission work looking into opportunities for business as missions.  Also, because of the special needs of our children, God had given us a heart for ministering to those with special needs.  We knew that we'd never be able to minister in a third world country due to our children's medical needs, so when we discovered the field of Bulgaria, we saw many doors of opportunity open before us, so we excitedly started walking through each one.

In April 2011, Tim and I went to Bulgaria on a Vision trip with the hope to figure out how our family can live there, see what schooling options were available, make sure we'd be a good fit with the ministry already there, and understand what our housing options were.  We loved everything about being there and saw many opportunities to minster.  We came home encouraged and believing we could make it work and that God was continuing to open necessary doors.

However, upon our return, David's health took as turn for the worst and by September, he was needing weekly antibody transfusions to help him fight bacterial illnesses.  In November, I ended up with a migraine that took 3 months to finally break despite several drugs, visits with 4 neurologists, and a 4 day hospital stay.  At the beginning of the ordeal, a CT Scan revealed 2 brain lesions that the doctors were concerned may be cancer or signs of Multiple Sclerosis.  All tests for those were ruled out, but they never could figure out what the lesions were or what caused them.

By February 2012, Josh had his first psychiatric hospitalization, and we were told that he had Bi-polar in addition to Autism and would need to be on a mood stabilizer for the rest of his life.  A few months later, we had a huge family crisis that nearly crushed us.  In November, Josh was hospitalized for the second time.  By then, we were so discouraged and felt that despite the call to missions in our lives, the door for Bulgaria as well as any full-time missions had been permanently closed.

We had to find contentment in the mission field at home where God had us in dealing with many medical and psychological specialists and finding opportunities to minister to families in similar situations as ours.  Missions didn't look anything like we had planned, but we knew God had a plan and purpose greater than ours.  We also found comfort in doing short term missions work and being able to be involved with a partnership in the Middle East.  We enjoyed the trips we were able to make over there and the growing relationships with our dear brothers and sisters in Christ.  In 2014, we had toyed with the idea of going over there as a family bringing our boys with us, but with the unrest happening in the country, we decided it wouldn't be wise.

In each of these attempts to serve God in missions, we felt these trials as a heavy hand of Satan working hard to keep us from the field.  We related to Job in many ways.  However, through each situation, we felt that God used the attacks of Satan to redirect our steps.  After all, Satan is not able to thwart God's ultimate plans!

Finally, in November 2016, we starting praying about taking our family over there in the Spring of 2017.  After much prayer, discussing logistics, analyzing the calendar, looking at the cost of flights, and coordinating dates with a gathering that was to happen in the Spring as well, we made the decision to go as a family and start making plans accordingly.  Within less than a week of that decision, our stable family situation crumbled in several directions.  It started with a crisis regarding David's outpatient therapy on November 30 that led to dealing with a legal agency which then resulted in the need to figure out another way for David to get help because of the trauma and loss of confidence in his counselor.  The decision also affected Josh's therapy hence disrupting the therapy both boys were receiving.  While in the midst of dealing with that emotional roller coaster, our beloved family kitten, who has brought so much joy to our lives the last several months, went missing after we let him out for the night on December 3.  He is an outdoor cat, but he would come in a few times a day to be loved and cuddled.  The missing cat brought heavy hearts to all of us but really took its toll on the boys, particularly Josh who began perseverating over his missing cat causing increased behavior issues at school and home.  It was difficult for us to hear the boys prayers pleading with God to bring their cat home and see their discouragement when in their minds "God didn't listen."

Seeing this battle in their hearts and seeing their tenuous faith shaken even more, I started to struggle with why God would do this to our children.  In the midst of working in the kitchen on December 14 praying and asking God to protect my boys' hearts and faith and asking Him "Why," God reminded me of the cost of missions and the struggles of our past each time we pursued missions.  I had that "aha" moment that this was Satan once again attacking our family trying to ruin our plans before they could even be put into action.  Tim and I had a great discussion that night about the circumstances, and while we had seen God using the circumstances in the past to redirect our paths, we really felt that God was in this trip and its timing and desired for us to go.  So, we decided to declare war with Satan and persevere and not let his attacks keep us from serving.  It was time to arm up for battle and move forward to show Satan he can't win.  We sent requests to both boys' schools for an excused absence for the trip, and we started working on a support letter.

Ephesians 6:10-13a - "Finally, be strong in the Lord and in his mighty power. Put on the full armor of God, so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground."

It didn't take long for Satan to take things up another level this time causing significant issues at school for Josh and unjust treatment of his behaviors and the resulting situations leading us into a battle for Josh's well-being and the legal rights of a kid with his diagnoses and the requirements of his Individualized Educational Plan (IEP).  This began the week of December 19 for us.  After the events and frustrations with Josh's school on December 20, I had reached my breaking point.  I could not fight Satan any longer.  If he wants to attack me, fine, so be it!  But LEAVE MY CHILDREN ALONE!  It's not fair to them!  Satan had found my weakness, and I was ready to surrender.

Luke 24:26-27:  “If anyone comes to me and does not hate father and mother, wife and children, brothers and sisters—yes, even their own life—such a person cannot be my disciple. And whoever does not carry their cross and follow me cannot be my disciple."

I Peter 4: 12-13, 16, 19: Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed...However, if you suffer as a Christian, do not be ashamed, but praise God that you bear that name...So then, those who suffer according to God’s will should commit themselves to their faithful Creator and continue to do good."

Thankfully, our story doesn't end here!  Read "The Miracle of Hope" to hear how God miraculously intervened.

2014 Year in Review - A Year of Answered Prayers

 "Not to us, O LORD, not to us, but to your name give glory, for the sake of your steadfast love and your faithfulness!" - Psalm 115:1 ESV

 "I love the LORD, because he has heard my voice and my pleas for mercy.  Because he inclined his ear to me, therefore I will call on him as long as I live."  - Psalm 116:1-2 ESV

Our hearts are full with awe at God's goodness to our family over this past year.  We have seen long-prayed for requests answered in wonderful ways.  Thank you to so many of you who have prayed faithfully for us.

David, now 8 years old and in the 3rd grade, is a sensitive, caring, young man who is becoming quite the violinist.  He has been playing the violin for 3 years and got to play his violin in a wedding this Fall.  David is also becoming quite the artist.  He was able to attend an art camp this summer and Saturday art classes this Fall. He is looking forward to continuing art classes this Spring.  As most of you know, David has Primary Immune Deficiency Disorder and has had a rough life of infections, antibiotics for his first 6.5 years, and weekly antibody transfusions the last 3 years.  This summer, his immune specialist trialed stopping the transfusions to see if David's body could produce enough antibodies on its own to sustain health.  David did extremely well and ended up with only one bacterial infection this Fall which was an infection many people were catching, and he fought it well with the help of essential oils and an antibiotic.  After reviewing David's blood test results this Fall, the immune specialist decided that David can remain off of the transfusions and be closely monitored because his body is producing some antibodies on its own, and while far from being within normal limits, it is sufficient enough for his doctor to continue to keep him off of the transfusions.  We are absolutely thrilled about this, and David is enjoying his freedom on the weekends without having to spend 1.5 hours getting his transfusions.  David has had 2 viral infections this Fall, and with the help of essential oils, he never developed a secondary bacterial infection like he usually does. In addition, David has been able to successfully wean off 1 of his 3 stomach medicines and is able to control his stomach pains with an essential oil blend instead.  We hope to wean him off of another by the Spring.

Joshua, now 10 years old and in the 5th grade, is growing tall and is a hard worker.  He is now on his third instrument - the piano - and is enjoying taking piano lessons as well as voice lessons.  He loves to sing in chorus at school also.  He is loving being in the second year at his new school and is thriving in such a supportive environment.  We have seen him make huge strides this year in dealing with his Autism, Bi-polar, Generalized Anxiety Disorder, and ADHD.  We started using essential oils this past Spring in an attempt to get his bi-polar under control.  It worked wonders, and as a result, we have spent most of the year weaning him down on his mood stabilizer drug which has been causing terrible side effects. There is a chance that by this coming Spring, he will be completely off of the drug.  We are praising God for these oils and allowing us to find something natural and so effective in helping him to maintain stability and function better.  This is a HUGE answer to prayer.  Josh is growing socially and learning to understand his emotions, using his words to describe his feelings and starting to ask for  help with using coping skills. We are very proud of the huge progress he has made this year.  Josh loves animals and nature.  We are hoping to find an animal shelter where he can work with cats (his favorite animal) this summer.

I continue to work part time as a special needs pediatric nurse for Bayada Pediatrics.  I received an award in Bayada's Hero program this summer.  My migraines and headaches have become a thing of the past since using an essential oil blend in the Spring.  By using the oil blend, I have stopped 3 migraines before they fully began and have been able to instantly relieve the occasional headache.  I have never felt better and am enjoying so much more energy and increased health since using essential oils daily.  Because essential oils have so greatly impacted our family, I have begun teaching classes about using essential oils for various purposes to enhance health and have started my own business selling essential oils and making and selling various, all-natural, health and beauty products with essential oils.  For more information about the business, visit  Naturally Essential Health & Beauty facebook page or the Essential oils page on this blog.

Tim continues to excel as a Financial Adviser for The Life Financial Group.  He is growing into a leadership role at his office and enjoys working with his colleagues and clients.  He has continued to thrive in his professional coaching program that he has been a part of the past 2 years that requires multiple trips to CA.  Tim's business and influence has grown substantially as a result of this coaching program.  We are enjoying having him home more as a result.  He is excited about the continued growth God has in store for him in 2015.  I must say that it's also been nice to see his allergies under better control than they ever have been thanks to an essential oil blend he is using.

God truly has been so good to us!  We are definitely excited to be using His creation to enhance and support our health and wellness and look forward to another year of good health.  We are currently praying about taking the boys with us on our next mission's trip.  We are hoping to take one this year, if God opens the door and works out the details.  We were disappointed that the two trips we were thinking we would do this year didn't work out.  We know that God is in control, and He works all things together for our good and His glory (Romans 8:28).

It is our prayer that each of you know and see God's goodness and faithfulness to you in a big way this coming year!

"Praise the LORD! Praise God in his sanctuary; praise him in his mighty heavens!

Praise him for his mighty deeds; praise him according to his excellent greatness!"

Psalm 150:1-2 ESV

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

This is the conclusion of my 3-part post of my struggles and blessings of being a special needs parents.  Feel free to read part 1 and part 2 if you haven't done so already.

Struggle #6:
I struggle with guilt.  I feel guilty that I'm not doing enough for my children.  I feel guilty that most of my time and energy goes into my children making me feel like I am letting my husband down.  I hate being so exhausted that I have nothing left to give him at the end of the day.  I also feel guilty if and when I take time to care for myself.

Feeling guilty when I do something for myself seems to be the most problematic for me.  With the many therapists coming in and out of our house and the visits with Josh's developmental pediatrician and psychologist, I have heard, "Make sure you take time for yourself.  That's important!" way too often!  However, I rarely heed the advice.  I'm too busy.  Then, when I do take an evening to go out, I don't enjoy myself because I am thinking of all of the housework I could be doing or how I should be helping Tim put the boys to bed.  Often, my mind is my worst enemy.  It is very hard for me to do something for myself.  For my own well-being and that of my family's, this struggle needs significant work.  It's just so hard to find time in our crazy schedules for me to have "me" time.

My husband and I would love to get out more often and enjoy more frequent dates, but duty calls, and because the needs of both boys are complicated, it's not as if is capable of caring for them.  It takes a special and understanding person to know how to meet Josh's needs.  Those kinds of people are hard to come by in our circles, but slowly, we are seeing doors opening in this area.  Now, we need to figure out how to carve out the time to have "us" times.  

Blessing #6:
I am blessed to be used of God to minister to others.  It has been so difficult to go through life feeling the burden to answer God's call in long-term missions when God has seemingly put so many hurdles and obstacles in the way.  There were times when I felt like time was wasting away and I couldn't be serving God.  God has shown me time and time again that He's using me for Kingdom-work in every circumstance He places me.  I don't have to be in a foreign country to be His vessel of ministry.  He gladly uses me in the ordinary details of my everyday life.  More and more, I am amazed by the ways in which I am able to minister to others as a result of the struggles I have faced in my life personally or with Josh or David.  From people I meet in a waiting room, to doctors and therapists, to neighbors and friends, to someone reading my blog...the list could go on for a while.  I am humbled by the knowledge that God chooses to use me in all of my imperfections to be a blessing and ministry to those around me.   

Struggle #7:

I struggle with fears -- fear about whether I am making the right medical decision for my child, fear that I'm not choosing the right consequence for my son's actions, fear about the next bacterial infection, fear of what others will think about me, fear about the future for my sons, fear about whether I am doing enough as a mother or wife, fear about whether I am doing enough for God, fear that I will forget something important in our busy schedule, fear that I am just not good enough for the roles in which I find myself.  I hate the doubts that creep up on me all of the time.  Satan has a way of catching me off guard all too frequently.  On the positive side, I have been driven to trust in God no matter how tough the situation appears.  The more I rely on God to work out the details of my life, it becomes easier to release the fears and cast my burdens and fears on the Lord, for He truly cares for me and will sustain me (Psalm 55:22, I Peter 5:7).

Blessing #7:

I am blessed with peace that passes all understanding.  As a result of facing my fears and difficulties in God's strength and casting my cares on the Lord, I am filled with His perfect peace and rest (Isaiah 26:3, Matthew 11:28-30, John 14:27, Philippians 4:4-7).  Often, I get the question, "How do you manage everything and not get overwhelmed?"  I always answer, "God!" then go on to explain that God gives me His strength and grace to make it through each day and that even in the midst of the scariest of times, God fills me with His peace.  With God, I can truly have peace in the midst of the storm.  My heart can be calm when life's circumstances could fill it with anxiety.  There's no better place to be than resting beside God's quiet waters where even if I find myself in the valley of the shadow of death, I will fear no evil because God is with me filling me with His love and wondrous peace (Psalm 23).

My Struggles and Blessings of Being a Special Needs Parent - Part 2 of 3

For the first 2 struggles and blessings, see Part 1.  This is the second part of my posts about my struggles and blessings of being a special needs parent.

Struggle #3:
I struggle with self-doubt and helplessness.  I am constantly second-guessing my decisions in parenting, my medical judgment, my ability to be a good wife, and my call in life.  As if parenting isn't hard enough for any given person, the complications of a special needs child, not to mention two, really make things difficult and messy at times.  We have been blessed to work with some great therapists who have been able to guide us in our parenting and choices, particularly in dealing with Josh and understanding what behaviors are simply sin issues, what are a result of his Autism or other mental health diagnoses, when to give consequences, when to take advantage of a teaching moment, when to comfort, when to be firm, etc.  With David, we have had to make many hard decisions, particularly with what surgeries to have him undergo, what immune-enhancing methods to try, and the biggest - having weekly antibody transfusions in which the antibodies I put into his subcutaneous tissue through a pump come from 70+ donors in which he could react to any of the 70 different blood types going into his system.  Then, there's knowing how to address the trauma David has suffered witnessing and experiencing some horrible violence that no child should see or experience when his brother goes into a violent rage.  For both boys, we have had to make tough decisions about medicines, such as David having to be on antibiotics prophylactically for 6 years, or the harsh psych drugs with significant side effects to help make life easier and more balanced for Josh.  These decisions are weighty enough to make me doubt myself.  Add onto those, the negative feedback and judgments of others around me!

I feel utterly helpless when I watch my boys suffer.  I feel helpless watching David succumb to yet another bacterial infection, wondering if he is going to live through it and not being able to take the pain and suffering from him.  I feel helpless watching Josh swing from the extreme moods of bipolar and feel even worse when Josh is aware of the swings and is able to voice how out of control he feels of his own body.  When he cries to God with tears running down his face asking God why he has to be this way, I feel my heart being squeezed to the point of bursting.  I have the power of prayer, but I often forget that it is a power I have, but knowing that God can choose to answer my prayer "yes" or "no" also renders me helpless as I realize that God holds my boys in His hands.  Being helpless in that sense is a good thing because there is no better place for my boys to be, but yet the human side of me wants to do something tangible to ease their pain, suffering, and misery.

Blessing #3:

I am blessed with abounding joy when I see progress or success in my boys.  It could be something as simple as Josh using good eye contact, David doing well on a test in school, hearing Josh appropriately ask an adult in passing how his week was, counting the weeks that go by without another bacterial infection, getting a good behavior report from Josh's teacher or school TSS (therapeutic support staff), seeing a heart of gold in a child who has suffered so much, enjoying stability in Josh's mood for an extended period of time, watching the boys grow and develop, seeing them increase in their spiritual understanding and relationship with God, hearing them play together nicely, watching Josh use a coping skill without prompting, hearing David improve in his violin playing, hearing Josh appropriately use an idiom (because he is very literal, these are hard for him to understand unless someone explains them to him).  I love praising my boys for their accomplishments.  Seeing the joy on their faces when they know they have done well or things are going well fills my heart with sheer gladness.  Sometimes progress for Josh with his Autism and mental health struggles can be very slow or nonexistent, so we gladly rejoice at the small accomplishments he makes that would ordinarily be overlooked in a neurotypical child.  God helps me to find joy in the small things, and that joy helps to sustain me and carry me through the tough times.

Struggle #4:
I struggle with worrying about what other people think of me.  This struggle has been a difficult one to overcome.  I have made significant progress but still have a long way to go in conquering this struggle.

When Josh was younger, he was incapable of using coping skills to help him get through a change of plans, something unexpected, or sensory overload.  As a result, he had countless meltdowns daily.  One of the hardest things to deal with were his fits in grocery stores when he was in full sensory overload.  People would look at me in judgmental ways or actually say things to me or about me in my hearing about how I had no control over my child, I had spoiled my child rotten, I needed to teach my child self-control, or I needed to give my child a good spanking.  These looks and comments pierced my soul.  It didn't take long for me to stop taking Josh to the grocery store as a result.  I still to this day avoid having to bring him into a store if at all possible.

It's been even more painful to suffer people's judgments and comments when it comes from family or church family.  I'm sure everyone means well, but they speak out of ignorance if they have never raised a child with Autism.  Seeing people get frustrated with Josh's behaviors or having people only come to us to complain about Josh's behaviors and never hearing positive things about him can be extremely draining, infuriating, and humiliating.  Even though I know that I am doing all that I can for my son following the best recommendations for addressing negative and positive behaviors and using the wisdom from God that I pray for daily, I can't help but let those comments get to me.  They used to eat away at me.  Thankfully, our family has come to a much greater understanding and our church family is starting to come around.  I am also getting better about just bringing these frustrations to the Lord and leaving them in His hands rather than internalizing them.

I hate it when I feel embarrassed by my son.  It is so selfish of me to be worrying about what others around me are thinking rather than doing all that I can to help my son through his meltdown.  I am working hard and improving in this area as well, but that selfishness still tries to make an appearance each time I deal with a meltdown in public.

Blessing #4:
I am blessed to see answered prayers in abundance as well as be on the receiving end of the prayers of God's saints.  Because our boys have special needs, we have a lot to pray about.  We have a wonderful network of friends and family who pray faithfully for us and who can be called upon to pray for an urgent need.  There is nothing more comforting than knowing saints from all around the world are lifting our family in prayer.

Prayer is powerful, and we have seen some amazing ways in which God has answered our prayers and the prayers prayed on our behalf.  Whether it be having a full night's sleep, a good behavior day, a good report from the doctor, a hospitalization avoided, a medicine that worked, the success of a new therapy, a meal provided by a friend, help with housework, help with childcare, an infection cleared, a successful surgery, etc., God has answered prayer!

We have also seen God move the hearts of friends to pray for us when they have no idea how to specifically pray.  In the past six months, we have had this happen twice.  God has even used someone in another part of the world to do this.  Because of their burden to pray, these friends emailed us to check see how things were going only to find out we were in the midst of a major struggle and that they were unknowingly praying us through it because they were following God's leading.  We are truly blessed to have access to God through prayer, to be prayed for, and to witness God's answers in the lives of our family.  

Struggle #5:
I struggle with selfish thoughts.  This is a hard one to admit to, but I hope that by exposing my sinful heart, I will have renewed determination to continue to work on this struggle.  I have a crazy and hectic life.  My days are filled with phone calls and emails from doctors, therapists, and schools; juggling doctor and therapy appointments; and trying to prevent meltdowns.  That is on top of the normal responsibilities I have in keeping up with housework, laundry, cooking meals, grocery shopping, helping the boys with school work and music lessons, being a wife, working part time...My life is exhausting!  Sometimes, I just want to have a "boring life" and get frustrated that I can't have it.  I question why life has to be so difficult and become discontent with the life God has chosen for me.  Far too often, I find myself begrudgingly processing a negative behavior with Josh or talking him down off the cliff or from a rage.  I often roll my eyes or wish I didn't have to oblige Josh in scratching his back to help him get the sensory input he needs in order to slow his engine down, especially when I am so tired from a long day.  I get frustrated that I have to plan out our weekends to ensure I have time to do David's transfusions.  I hate that we can't be spontaneous since Josh needs to know ahead of time what to expect.  At times, I get bitter that I never get to do something that I want to do or do something for me because I'm too busy doing things for everyone else.  It is so easy to fall into the pattern of feeling sorry for myself, so it's a daily battle to keep my eyes off myself and my circumstances and look to Jesus, the author and finisher of my faith (Hebrews 12:2).

Blessing #5:
I am blessed with growing faith and sanctification.  My life as a special needs parent has been full of very hard and difficult trials.  My faith has been stretched and strengthened in ways that still amaze me in looking back at how far I have come.  I am thankful for the fires that have helped me come forth as gold (Job 23:10).  I wouldn't be who I am today without these countless trials.  Even though I wouldn't have chosen to have them, I am grateful that I did.  My relationship with God is so much closer and stronger because of the countless times I have been brought to my knees, utterly helpless and having to depend completely on God to carry me through.

God has used the good and bad times to grow in my sanctification.  I can't begin to count the times that God has revealed a sin or struggle in my own life through my addressing behavior issues with Josh or David.  Also, God has had to force me to rely on Him instead of myself by giving me trials that are impossible for me to overcome without Him.  This has been a hard thing to deal with because I am independent, strong, a fighter, and I don't give up.  I like to have control, but God has had to show me that even when I think I am in control, I'm really not because He is.  I am finding it easier to rest in Him and turn to Him for strength for each day.  Each day, through the good and bad, God is making me more like Christ.  He is chipping away at the old man and revealing the new.  I am grateful for the way God continues to do good work in my life, but I do long for completion at the day of Jesus Christ (Philippians 1:6).

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

One Step Forward, Two Steps Back

An update on David's health issues has been long overdue, but a move and the usual crazy Russell household activity has kept me away from the computer.  I am taking a quick break from cleaning and trying to unpack decorations to update everyone on David's current health status.

The beginning of September marked 1 ENTIRE YEAR of no bacterial infections for David.  This is absolutely HUGE considering that his longest stretch ever in his life has been 5 months and his norm was at least 1 monthly.  We are praising the Lord for this improvement.  As I had posted earlier this year, David was able to successfully come off of his prophylactic antibiotic in March of this year finally being officially antibiotic-free for the first time since infancy.

However, after David came off of his antibiotic, within a few weeks he started having severe gastrointestinal (GI)cramping.  I started documenting the attacks to find a trend but came up empty.  The attacks got so severe, I took him to his pediatrician who quickly referred him to his Gastroenterologist who ran multiple tests throughout June and July.  We found out that the normal bacteria in David's gut has overpopulated and backed up through his whole GI system.  His doctor thinks that his body got used to having an antibiotic on board to control the population for all of those years, and stopping the antibiotic put his gut into a crisis not knowing how to handle the bacteria population on its own.  David is now currently on an antibiotic (Flagyl for you medical people) to get his intestinal bacteria to just below a normal level.  Once David finishes this 7 week course of antibiotics, we are hoping that his body will then kick into gear and control the bacteria population on its own.

If David's body is successful in controlling the bacteria in his gut, his immunologist is going to try decreasing his antibody transfusions from once a week to every other week.  This is a HUGE step for David and us, and we are excited to be at this point.  The goal is to continue to successfully wean down the transfusions with the hope that David's body will now be able to properly produce the antibodies needed to fight bacterial infections.  His immunologist is hopeful that David may be officially weaned within a year's time!  We couldn't be happier.

On another note, at David's last visit with the immunologist when we discussed this plan, we found out that David's lungs aren't functioning as well as they normally do, but his doctor isn't entirely sure why.  David also had strange rivulets of mucous going down the back of his throat.  He doesn't seem to be having any drainage from  his sinuses, so the doctor is not sure where it is coming from.  However, one suspicion is that David's reflux is severe enough that he is refluxing into his oral/nasal cavity causing the mucous trail.  In addition, the reflux is then going into his lungs (he is aspirating reflux) irritating the lining of his airway decreasing his lung function.  David's reflux is made more severe by the deformed artery he has coming off of his heart that pushes into the esophagus.  As a result, he is on a steroid inhaler daily to try to keep the inflammation down.  He will be re-checked in October.

So, yes, we are taking a major step forward with the weaning process, but with the decreased lung function and the GI struggles, we have taken 2 steps back.  However, we will not lose heart.  David is in the very capable hands of our mighty God who is the Great Physician.  We are excited to see God's continued work in David's life.  He's got some incredible plans in store for strong, resilient David.

David - 9/2/13 (2nd Grade - almost 7 years old)

After the Winter comes the Spring

The LORD is far from the wicked,
but he hears the prayer of the righteous.
The light of the eyes rejoices the heart,
and good news refreshes the bones.
(Proverbs 15:29-30 ESV)

After praying for 6 years for God to heal David of his debilitating Primary Immune Deficiency Disease, we are seeing God finally answer those prayers "yes."  We are refreshed just like the earth is refreshed after a long winter at the good news that has unfolded before our eyes!

As an infant, David's doctor's determined that he had an "immature immune system" explaining his continued battles with ear infections, bronchitis, and a bout of pneumonia.  After the doctors operated on 2-year-old David putting tubes in his ears and draining his current ear infection which had been resistant to 5 different antibiotics, we saw a sudden decrease of ear infections only to see a nearly-monthly battle with sinus infections.  Despite the drugs to treat his sinuses and nose and prophylactic antibiotics (antibiotics given at lower doses daily to help prevent infection), the sinus infections continued.  David's doctors then decided to take out his adenoids almost exactly one year after his ear surgery.  After the surgery, we saw a slight decrease in the number of sinus infections but a huge increase in tonsillitis infections.  At this point, with the continued prophylactic antibiotic use mixed with the full-strength antibiotics for active infections, David had built up a resistance to 2 classes of antibiotics.

When David turned 4, the age that kids with "immature immune systems" turn the corner and improve, David's conditioned only worsened leading to many more tests which led to his official diagnosis of Primary Immune Deficiency Disease.  David's body was barely producing IgG antibodies (those which fight bacterial infections).  Just before his 5th birthday, David's immune specialist decided that we had done everything we could to fight this immune disease and with his worsening infections and continued antibiotic resistance, the only other option was to give him infusions of antibodies taken from the blood of 70+ donors and given to him weekly subcutaneously through a pump.  Once the infusions began, we did see a huge improvement in his health.  He set a new record of being infection-free for 5 months.  At that point, tonsillitis infections and sometimes sinus infections on top of that began to take vengeance on David's body.

In a year's time, David had suffered from 11 bouts of tonsillitis despite always being on an antibiotic.  In September 2012, we were faced with the decision of allowing David's surgeon to perform a tonsillectomy on him despite the fears of what removing yet another immune organ would do to David not to mention his trend of having the infections move to another site, which at this point would only go to his lungs.  We bathed David in prayer asking that God would allow the surgery to be more successful than we could ever imagine.  God heard our prayers and answered them in the most incredible way!  Since his surgery, David has not had 1 bacterial infection making his new record of being infection-free at 6.5 months!!!!

In discussing David's continued progress with the immune specialist this past Friday, the doctor has made the decision to take David off of the prophylactic antibiotic and see how David's body responds with only the weekly antibody infusions.  We are thrilled beyond words!  As we see the ground and trees around us start to show signs of life after the winter, we feel that Spring for us has truly come, and the darkness of dealing with this Primary Immune Deficiency Disease is starting to be made light through God's amazing work.

You have turned for me my mourning into dancing;
you have loosed my sackcloth
and clothed me with gladness,
(Psalm 30:11 ESV)

Tonight, as David prepares for bed, he will NOT be taking an antibiotic for the first time in a year straight!  We are continuing to cover him in prayer asking that God would allow David's body to fight without the antibiotics.  We are praying that the next step in the goal--decreasing his antibody infusions to every other week from weekly--will be able to happen this summer as a result of David's remaining infection-free!  We know that this can happen only through God's power and will.

Light dawns in the darkness for the upright;
he is gracious, merciful, and righteous.
It is well with the man who deals generously and lends;
who conducts his affairs with justice.
For the righteous will never be moved;
he will be remembered forever.
He is not afraid of bad news;
his heart is firm, trusting in the LORD.
His heart is steady; he will not be afraid...
(Psalm 112:4-8a ESV)

We invite you to praise the Lord with us for his continued goodness in David's life and continue to pray with us that God would continue to bless David with good health.

Light is sown for the righteous,
and joy for the upright in heart.
Rejoice in the LORD, O you righteous,
and give thanks to his holy name!
(Psalm 97:11-12 ESV)

Laughter in the Midst of Sorrow

Once again, I have been silent on the blog front because of the trials that continue to bombard us from every side.  I decided it's about time I write down my thoughts.

After battling for David's new health insurance to cover his antibody blood transfusions, we finally got things settled and calmed down by the end of October.  We saw God work a miracle first-hand in getting the infusion supplies covered only causing David to get his next transfusion 1 day late instead of 4 days late as circumstances had determined.  Another exciting praise is that David remains HEALTHY!  He has been infection-free since the end of August--right before his September 7 surgery.  This means his surgery was successful, and our prayers have been answered.

Our greatest struggle has been with Joshua.  As I mentioned in my last blog post, we and his doctor took him off of one of his medications since it was causing his behaviors to worsen instead of improve.  However, we didn't replace it with a different drug.  Because he struggles with a mood disorder (which the doctors believe is bi-polar, but he's too young for the official diagnosis), he needed to remain on a mood stabilizer but be on one that didn't make his behaviors worse.  After he stopped the problematic drug, he got so much better, and we saw the old Josh for the first time since I had begun my battles with the chronic migraine over a year ago.  However, after a little over a week, his behaviors worsened again as he became emotionally/psychologically unstable.  In November, we put him on a different mood stabilizer, but it was too late.  He went into crisis mode.  In addition to episodes of paranoia, his melt-downs were becoming extremely violent and very long.  Tim was no longer able to control him which was very scary for the safety of our family as well as Josh's.  On November 13, we made the very difficult, heart-wrenching decision to admit Josh into a psych hospital for the second time (he was hospitalized in Feb. 2012).  He was hospitalized for 14 days and did really well on new meds and in the controlled environment.  He came home on the 26th.  He started to struggle with falling asleep in the middle of class as a result of the new medications.  When I called the hospital psychiatrist about it that Thursday,  he told me to give Josh's am dose with his bedtime dose.  The next day, I did not give him his am dose, and he saw his outpatient psychiatrist who told me Josh looked way too sedated and that his dose needed to be decreased by half.  By the afternoon, he fell over asleep while standing up and dancing during a music assembly at school.  The school nurse called me because they couldn't get him to wake up, and it was hard for her to tell he was breathing.  I picked him up and took him to the ER where we found out he was having drug-induced narcolepsy-like symptoms.  He was also wheezing, so the doctor chose to give him a double albuteral nebulizer treatment to slam his system into overdrive and open his airways.  The treatment worked, and his vitals remained stable afterward, so they discharged him.  Since then, after dealing with some severe melt-downs, things have finally seemed to stabilize, and Josh has been doing much better this past week.

Josh's hospitalization was very difficult on us because we felt like failures in being able to help Josh even though we were reassured that we did everything possible to help him and that mood disorders are very difficult to treat.  We missed Josh greatly.  We were allowed to visit him 4 days a week.  Some visits were really discouraging but others were encouraging.  Poor David suffered the most without having his brother, best friend, and play mate with him.  All 3 of us had heavy hearts as we went throughout our days leaning on God's strength and grace to get us through each day, for that was the only way we survived.

We are concerned about David as a result of everything he has witnessed and experienced with Josh and his issues.  Since Josh's hospitalization, David has become very emotional and is having a difficult time focusing.  We thought things would improve when Josh got home, but they have only worsened.  David is usually the first victim of Josh's anger melt-downs.  He has been kicked, punched, bitten, and leveled to the ground.  He has also witnessed his mom and dad getting violently attacked and has heard some awful words coming out of Josh's mouth when he would verbally abuse us.  No 6 year old child should have to experience these things.  He does not like to talk about his feelings, so we are having a hard time understanding what is going on inside of him.

Needless to say, in all of this, our hearts have been extremely heavy and filled with great sorrow.  Many tears have been shed.  Reminding ourselves of God's promises has been the only thing to keep us from being swallowed up in the suffocating darkness of our grief.  God never stopped holding us.  Even in the midst of our deepest sorrow and most difficult days, He provided times of laughter and gladness to help us carry on.

We experienced the truth of Proverbs 17:22 (ESV) firsthand:

"A joyful heart is good medicine,
but a crushed spirit dries up the bones."

 We happened to capture two particular incidents where God gave us laughter in the midst of our sorrow on video, so we share those times with you:

You have turned for me my mourning into dancing;
you have loosed my sackcloth
and clothed me with gladness,
that my glory may sing your praise and not be silent.
O LORD my God, I will give thanks to you forever!
(Psalm 30:11-12 ESV)

I find great hope and comfort as I relate to the Psalmist's words in this wonderful passage (with emphasis added:

I love the LORD, because he has heard
my voice and my pleas for mercy.
Because he inclined his ear to me,
therefore I will call on him as long as I live.
The snares of death encompassed me;
the pangs of Sheol laid hold on me;
I suffered distress and anguish.
Then I called on the name of the LORD:
“O LORD, I pray, deliver my soul!”
Gracious is the LORD, and righteous;
our God is merciful.
The LORD preserves the simple;
when I was brought low, he saved me.
Return, O my soul, to your rest;
for the LORD has dealt bountifully with you.
For you have delivered my soul from death,
my eyes from tears,
my feet from stumbling;
I will walk before the LORD
in the land of the living.
(Psalm 116:1-9 ESV) 

Overwhelmed but Clinging to Hope

I have been silent on the blog front for a while now mostly because the demands of life have kept me too busy to write out my thoughts but also in part because I did not know where to begin to express my thoughts and feelings of the struggles of the past month plus.

Yesterday's congregational Scripture reading of Psalm 13 struck a cord with me:

[TO THE CHOIRMASTER. A PSALM OF DAVID.] How long, O LORD? Will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me? Consider and answer me, O LORD my God; light up my eyes, lest I sleep the sleep of death, lest my enemy say, “I have prevailed over him,” lest my foes rejoice because I am shaken. But I have trusted in your steadfast love; my heart shall rejoice in your salvation. I will sing to the LORD, because he has dealt bountifully with me. (Psalm 13 ESV)

The enemy I face is Satan, and he is doing everything in his power to take me down and make me feel defeated.  At times I feel as if he has won.  When I am at my lowest, God uses passages like this or songs about His promises to remind me that He has not forsaken me and that He loves me and is taking care of me.

If you've read other blog posts from this past year plus, you know that things for the Russell family have not been easy.  Things continue to be a daily struggle with new battles to be fought it seems almost on a daily basis.  Currently, we are in a medical insurance crisis with David whose government-funded insurance (CHIP) dropped him due to their labeling him with a "chronic disability" aka, his immune disorder.  We are in the process of appealing the decision but it could take months.  In the meantime, he has been sent to the welfare insurance (Medical Assistance-MA) which has made him lose his pediatrician in order to keep his immune specialist because of our limited choices of plans which few doctors accept.  We currently do not know if and how he will be able to get his next weekly antibody transfusion due to MA not wanting to cover it. Josh continues to have behavioral, psychological, and emotional challenges that try our patience and sanity.  Coordinating care with three different doctors has been a challenge.  We are struggling to get the proper care and supports into place for Josh in his school due to a new school year and a failure of the school to complete a behavior analysis at the end of last school year.  My health continues to be a struggle for me and a mystery to all doctors involved in my care.  After the last series of testing rechecking my thyroid which came back normal, my doctor has said, "No more testing. Sometimes people go for years without a diagnosis.  You need to accept that."  So, she has given up, and I've lost my last medical ally willing to help me find a diagnosis.

Needless to say, just in these challenges alone, I spend many hours a day on the phone, on email, at doctor's appointments, and at the welfare office trying to take care of the problems.  House work has been pushed to the back burner making me feel more like a failure as a wife and mother and frustrated with my situation.   As I feel discouragement and doubt creeping into my heart's door almost on a daily basis as I fight my daily battles, I need to remember the good things of life and the many blessings God has given me in the midst of my multiple storms.

• David made it through his surgery better than we could have ever hoped.  He kept us laughing helping to ease the anxiety in our hearts before his surgery as his pre-anesthesia drug made him do silly things.  We couldn't help but take a video of him and his silliness.  He healed better than even his surgeon expected and had barely any post-op pain at all.  It was difficult to keep him down during his 2 weeks of activity restrictions, but he made it, and now he's enjoying being wild and crazy.  It has almost been a month since surgery, and David has remained infection-free which is approaching a record for the past few months. We have so much to be thankful for in this area!

• I contacted Senator Rafferty's office about David's health insurance.  They are doing what they can to help us with the situation and sympathetic to our crisis.

• My health has been better than it has been with fewer flares where the symptoms are at its worst ever since I decreased the seizure med used to control the pain in my head.  My headache pain has been stable or pretty good outside of a few breakthrough migraines or headaches.  This is all reassuring especially considering the amount of stress I have been under in the last month.

• After meeting with Josh's Developmental Pediatrician, God helped me to see a possible cause of Josh's behaviors since his hospitalization in February.  As a result, I have consulted with his psychiatrist, and we are doing an experiment with his medication taking him off of one completely to see if we see a difference.  It has only been a few days, and we have noticed a huge improvement, so we are praying that this is the answer we have been praying for for months.

• The boys celebrated another year of life this month.  David turned 6 years old on Sept. 9, and Joshua turned 8 years old on Sept. 18.  They had a Spy birthday party on Sept. 22 which was fun for everyone there including the adults.

For more birthday party pictures, check out my Facebook Album (you do not need facebook account).

• Tim continues to be the anchor of our family.  Outside of a recent battle with allergies and a sinus infection, he has been healthy, strong, works so diligently to provide financially for our family, and supports our family's emotional and spiritual needs.  I am so thankful for him.

God uses all trials to teach me and make me more like Him.  With each struggle, He is giving me more tools to be a blessing and instrument in the lives of others.  With each battle, He is forcing me to lean on Him more.  When all seems lost, He forces me to see that He remains my Rock and holds me close.

Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy. (Psalm 61:1-3 ESV)

David Awaits His Third Surgery!

Well, after David's infection in the middle of May, his immune specialist increased the amount of antibodies David got in his weekly antibody blood transfusions and also put David on a rotating class schedule of prophylactic antibiotics in the attempt to curb David's infections and keep him healthy.

This was successful until Sunday, August 12, when in the evening, he spiked a fever.  Getting out my nursing equipment and doing an assessment, I came to the conclusion that David had a sinus infection and tonsillitis.  Anytime David runs a fever, we have to call the doctor, so Monday morning, while driving to work, I made a call to his immune specialist who was out for the day and asked that we get David's pediatrician to see him for a throat culture in light of the issues David had in May with having heavy growth of a bacteria called staph aureus which was resistant to many antibiotics and led him to the ER.  Monday evening, I took him to his pediatrician who diagnosed him with a sinus infection, tonsillitis, and STREP THROAT to top things off!  My head was spinning at how he could be so sick with having an antibiotic in his system all the time on top of the extra antibodies from his transfusions.  So, David's prophylactic antibiotic of omnicef was doubled to be a full-strength antibiotic to fight all three infections.

The confirmation of tonsillitis meant David would need to see his Ear, Nose, and Throat specialist (ENT) again, and this time surgery was a MUST.  We met with his ENT on Wednesday which was just in time since David had been running a 104°F temperature for the past 2 days despite the antibiotic and maximum dose of Tylenol and ibuprofen which meant that once again, his tonsillitis was resistant to the antibiotic he was on to treat the infections.  The ENT put David on Augmentin which did the trick back in May and was one of the few oral antibiotics that the bacteria was sensitive to.  Surgery details were discussed and paperwork signed.

On Friday, September 7, David will have a tonsillectomy, his third surgery in his 5 years of life (ear tube surgery & adenoidectomy were the other 2).  This surgery date is bad timing in many ways.  First of all, David starts 1st grade on Sept. 5, only 2 days before.  Secondly, David's birthday is Sept. 9, so he will only be 2 days post-op and most likely not feeling up to celebrating.  He will still need to be eating only cold, soft foods too, so an ice cream cake is definitely in order. :-)  We had to also push back the boys' joint birthday party to Sat., Sept. 22 so that David will be able to run around and have fun with his friends since he will be on activity restrictions for 2 weeks post-op.  Finally, the most scary timing issue is that David will finish the Augmentin about 2 weeks before the surgery.  He will resume his prophylactic antibiotic, but after this last infection, we know that he still is susceptible to infection.  We need to bathe David in prayer that God would protect his body from infection and help him to stay healthy to make it to his surgery date.  Otherwise, an infection would cause the surgery to have to be postponed.

David competing in his first horse show this summer after a week of horse camp which he thoroughly LOVED!.
You can see the ribbons he had already won there in the picture, and in this particular heat, he took 1st place!

David is in good spirits about all of this and wants the surgery.  He is sick of getting tonsillitis, and I don't blame him since this is his 11th case of tonsillitis since last Spring (2011).  We continually thank God for David's easy-going spirit.  He is such a trooper!

The ever present smile that warms my heart in David's good and bad times!

The other concern and need for prayer is that this surgery will be successful in PREVENTING infection.  The past 2 surgeries have only caused the infections to go somewhere else.  His ear surgery stopped the ear infections, but David started to get sinus infections.  His adenoidectomy was intended to stop the sinus infections, and although it reduced the amount of them, he continued to get them but also started getting tonsillitis infections.  Our fear is that if we remove the tonsils, the infection would find another location as before.  The only place to go is farther down meaning infecting his lungs.  It's not like his lungs can be removed next.  The real problem is his immune system, and with the removal of the tonsils, he will now be down 2 immune organs which doesn't help his already deficient immune system.  At this point, there is no other alternative.  We are still praying for God's healing and that the antibody transfusions will be sufficient and most importantly, that David's body will start producing the antibodies on its own so that all of this can become a thing of the past to the glory of God, the Great Physician.

David is in God's capable hands.  God is working out His perfect will in David's life molding him and making him into the vessel He desires for His service.  We are resting in God's promises and are walking in His daily doses of grace and strength.  Will you join us in praying for David's health and his upcoming surgery?  Perhaps God wants this to happen so that we can be a shining light to the staff of Pottstown Memorial Medical Center, the hospital where David will have his surgery.  We don't know God's purposes, but we know that our all-sufficient God will work His perfect will, and we stand humbled that He chooses to use all of us as his tools in His Kingdom!