Sunday, March 9, 2014

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...

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