Friday, September 29, 2017

What if the nest doesn’t empty?

“And let us not grow weary of doing good, for in due season we will reap, if we do not give up.” Galatians 6:9, ESV

His last year as a “minor” has begun. My son with a rare genetic disordered celebrated his 17th birthday a few months back. It is slowly gaining on me, this concept of what’s next.  I will no longer be in the club of moms to special needs children — I will be the parent of a disabled adult. Doesn’t sound as cute, or inspiring, does it? Seems rather dull now that I think about it.  

I have two boys. My oldest, Ben, is a “typical” and exceptional young man, who is now 20. He is cruising through his second year of college, has a lovely girlfriend, and is chomping at the bit to be unleashed on his future. My husband and I cherish every moment he still lives at home because we know those days are numbered. While many of our friends lament the the moment their kids leave home, my husband and I take great pride in the man that God allowed us to nurture and we relish the idea that he is an independent adult who is capable of doing anything he sets his mind to, with or without us.  

But then there is Nick. He won’t be moving out, going to college, dating cute girls, or any of those other things that mark “adulthood.” What will he do? What will we do? The same things we’ve done since he was born. Daily grind: wake him, dress him, toilet, bathe, brush teeth, feed, entertain, keep safe, hopefully drop him off somewhere for continuing education of activities, and then start all over the next day. Forever.  

When a momma takes a minute to look at the endless monotony of it all, she can feel really tired. My group of girlfriends are now little by little finding the new freedom and excitement of an empty nest. Because, honestly, at 50, there are things you’re ready for: sleeping in late, spa appointments, getaways to cozy New England bed and breakfasts (I’ll spare you my full list which goes on for days). This morning as all of this rattled around in my mind, these words kept coming to me, "Do not grow weary.” So I pulled out my Bible and made sure I knew the rest of that phrase. Here’s what I found: "Do not grow weary in well doing, for in due season we will reap, if we do not give up." The Message Version says, "Let’s not allow ourselves to get fatigued doing good. At the right time we will harvest a good crop…" 

I know one thing: I want a good harvest. I want that which God has planned, planted and prepared just for me and there is a perfect timing with it. Because I know that I can trust Him to keep his promise, and fulfill His word, I can rely on that good harvest and get myself back in the game. How can I possible grow weary of expecting and receiving His lavish gifts and love? That is the full picture. So let me know just look at what my friends are doing or what I’m not doing, let me always remember to see that there is a complete promise here within this monotony I am gifted to live out. There is a certainty of a good harvest and I will not grow weary as I wait for it. Others reap different harvests, by sowing and tending different things — let that not distract me for a moment from my own field which is rich in bounty if I will take the time to see it.  

Here’s my prayer, and perhaps yours too:
Lord, thank you that you have called me to something exceptional. Give me the strength to wait on your promise, and to not grow weary or quit doing good. Thank you for not only supernatural edification, but also natural wisdom to know what to do in order to keep going where you lead.  

Thursday, September 28, 2017

The making of a robot

 "My grace is sufficient for you, for power is perfected in weakness." Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.
1 Corinthians 12:9-10 (NASB) 

My daughter needs a great deal of assistance to do things that the rest of us don’t have problems doing.

She needs a gait trainer to walk.

She needs special shorts to help keep her hips in line so she does not get hip malformations.

She needs a special vest to keep her scoliosis from getting worse.

She needs foot braces to keep her feet from getting turned out permanently.

She needs a computer to help her talk.

She needs a wheelchair in order to move within a space.

She needs a lift for caregivers to move her from one area to another.

The equipment, equipment, equipment gets overwhelming. And I am sure I am leaving out something. 

In a moment of complete frustration after the delivery of the most recent piece of equipment, my sweet husband said:

 I feel like we are turning Girlie into a robot.”

Oh my.

A robot?

Covered in things that are supposed to help her.

Covered in useful but sometimes overwhelming amounts of items.

We are so VERY thankful for all the amazing inventions and interventions that can help girlie, and thankful for the people who are assisting us with all of these, both in obtaining them but also in using them daily.

But balance and discernment are needed to know how much, how often, and to what extent each is needed.

Things that help her feel and look and be more like everyone else.

Things that address each area of her physical weakness.

My weakness – not so much physical but spiritual. I am spiritually weak – pride overwhelms, "to do" list dictating over people, lover of self and security. 

I cover my weaknesses, prop them, mask them, strengthen them, artificially making my weaknesses stronger, finding equipment to fix my weaknesses.

Do I rely on my phone to fill voids and make pretend usefulness?

Do I rely on Facebook to connect me to the world?

Or do I rely on the Word to connect me to my Creator?

Do I rely on the words of others to prop up my feelings and hold on to those words for strength?

Or do I rely on the Word to provide true hopefulness?

Can I be "content" in my weakness as 1 Corinthians 12 says I can?

Please pray with me:
God, I pray that you would help me in my weakness. My flesh seems to over take me, but you seek to overwhelm me with your love every day. Open my eyes that I may see you in the every day, every day. Please help me to look to you as my source in every area of weakness, and be content in my weakness.  
In Jesus name I pray. Amen.

Wednesday, September 27, 2017

What Are You So Afraid Of?

“Do not fear, for I am with you, do not be afraid, for I am your God; I will strengthen you, I will help you, I will uphold you with my victorious right hand.” 
(Isaiah 41:10 NRS)

“What are you so afraid of?” I kept asking myself that question repeatedly as I packed my suitcase for a trip I suddenly did not want to take. It wasn’t the flight that had me feeling anxious, even though it was on 9/11. It wasn’t the destination. I was going to be with friends for the week. It wasn’t the task at hand I feared. I was going to ground zero of the Houston flood with my suitcase bulging with safety goggles, dry wall saws, work gloves, and lots and lots of respirator masks. I felt called to go. I wanted to go. I was prepared to go. Yet, I felt afraid.

I was afraid of the unknown.

News and social media fed the fear:
“I know a friend who found an alligator in her house after the water receded.” 
“Several rescue workers were electrocuted.”
“One volunteer I know got that flesh-eating bacteria and he almost died.”
“There is toxic mold everywhere and it’s getting worse every day!”

Sign me up? Not so much. But, faith goes where fear says, “No!”

In all of my years of ministry with parents of children with special needs, the unknown is the biggest tormentor that drives our fears. Sometimes it is our closest friends meaning to offer comfort who instead feed the fear of the unknown. “I know a friend whose child has (fill in the blank) and… (insert horror story here)” It offers no comfort. 

Yet, God promises, “Do not fear for I am with you.” The unknown holds no power in comparison to God’s offer to strengthen and uphold us. How do we prepare for the unknown? What are the “safety goggles and work gloves” of the special needs parent? We can educate ourselves about our children’s diagnoses. We can research programs and services. We can engage in financial planning for a future we cannot see. Maybe what we need most of all are spiritual respirators. Breathing in the word of God. Filtering out the anxious advice of well-meaning friends. Breathe in peace. Breathe out worry. Breathe in strength. Breathe out fear.

After all that fear of the unknown, what did I encounter in the midst of devastation? I found blessing and relationship. I volunteered through Current Church in Katy, Texas and they put a priority to helping the elderly and those without a network of support. They focused on those who were on the margins and put them at the top of the list. It was Christ-like. It was epic. It also smelled really, really bad.

God who conquers all fear, fill us with your peace. Help us face the unknown fully confident of your strength and your promise that we are never alone. Amen

Tuesday, September 26, 2017

Lonely Season of Gathering

“Pay attention and turn your ear to the sayings of the wise; apply your heart to what I teach...” Proverbs 22:17 NIV 

Can you believe that this week is the end of October? Thanksgiving and Christmas are right around the corner. First we get to enjoy Thanksgiving- a time of thanking the Lord for the many blessings that he has given to us. We get to follow this with Christmas celebrating Jesus- the greatest blessing that God has ever given to his world. We can enjoy lights, decorations, special foods, treats, gifts and social gatherings.  What could ever overshadow such a joyous season of holidays? The excitement of it all difficult for children to wait.  For us, parents, though the holiday season can be difficult.

There are so many challenges for special needs families when it comes to social gatherings. There are physical obstacles for families whose children have difficulty with mobility, but more difficult than that are misunderstandings and the general feeling that we don’t fit in at social gatherings. 

Sometimes our children cannot play or follow directions the way that peers of a similar age can. Many of our children (especially ones with sensory sensitivities) are not at their best in unfamiliar situations and their discomfort can show in so many ways.  Friends and relatives might make comments assessing our child. After Liam’s diagnosis we knew that he would have orthopedic and communication disabilities along with a host of medical complexities.  Yet when in social settings people often made comments similar to “He looks just fine. Are you sure the doctors are right?”  As much a I wished that the doctors were wrong, having that conversation repeatedly was difficult for me on so many levels. Today if I share something about our life- like Liam’s utter obsession with his iPad and Thomas the train- friends will often say that it is the same with their own (typical) child.  This leaves me feeling so misunderstood because the kind of obsession that my son has is ABSOLUTELY nothing like that of any typical child.  REALLY.  No comparison.  When Liam is in an uncomfortable situation he will usually sit watching his iPad and refuse to engage with those around him.  This LOOKS to the general public like a perfectly behaved child.  So when others comment on what an easy guy he is, that is hard for me.  A big boy with total care needs is not easy, even if he has a wonderfully easygoing, gentle personality.  Sometimes our friends and relatives say all the right things. They make us feel so welcome, but the utter work to be there and care for our loved one is just too much.  Instead of feeling celebratory, these experiences can leave us feeling more isolated and alone in our journey than we did before we came.

Jesus knows exactly what it is like to feel alone in the midst of those who love you. During his last week alive on earth, he took his three best friends with him to the garden to pray. He was in agony knowing that he would face the cross. As he prayed, the disciples fell asleep. They weren’t with him in his difficult time. They were snoring! Later that same night, Peter went on to deny him three times. Yet Jesus loved them and forgave them.

To make things easier for our loved ones, we can be clear with them about our child’s needs. If there are accommodations that will make a gathering easier, call ahead to be sure that the hosts know about them. Being realistic helps as well. We often let friends know that if Liam seems overwhelmed, our visit will be short.  Sometimes we bring a second car so that one of us can take him home and the other can keep the rest of the family at the gathering.

To make gatherings easier for me, I have begun praying that God would help me to make a conscious effort to take the words and actions of others in the kindest possible way.
“My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry...” James 1:19

I also ask him to remind me that His words are the only ones that matter. “Pay attention and turn your ear to the sayings of the wise; apply your heart to what I teach...” Proverbs 22:17 NIV 

I pray that God would soothe my heart as I read his word and pray.  I pray that he would give me his love and forgiveness to apply to those around me.  I ask him to make me captive to his word and to remind me that I am not alone in this journey. He is with me.  The same is true for you.

May he give you his peace and true joy as you celebrate the holiday season to come.

Dear Jesus, Please soothe my heart as I read your.  Give me your  love and forgiveness to share with everyone around me.  Make me captive to your word and to remind me that I am not alone in this journey. You are with me. Help me to feel your presence in the arms and presence of my loved ones.  Amen.

When I am afraid

“Be strong and courageous, for you are the one who will lead these people to possess all the land I swore to their ancestors I would give them. Be strong and very courageous. Be careful to obey all the instructions Moses gave you. Do not deviate from them, turning either to the right or to the left. Then you will be successful in everything you do. Study this Book of Instruction continually. Meditate on it day and night so you will be sure to obey everything written in it. Only then will you prosper and succeed in all you do. This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”
Joshua 1:6-9 NLT

When I learned I was having serious pregnancy complications, I was afraid. The following 6 long weeks of bed rest meant opportunity to ruminate on everything that could go wrong, everything that did go wrong, and everything that I had possibly done wrong. And after all of the fear and worrying, something really did go wrong; my son was born on the first day of our third trimester. He was 13 weeks premature and weighed in at just 2 and half pounds. My husband and I spent all day of the next nine weeks hovering over his incubator in the NICU, hanging on to every word of the nurses and waiting as patiently as we could muster to change his diaper every 2 hours. Days spent in the hospital are exhausting, but nighttime is much worse. The night shift never seemed to tire of our panicked, middle of the night phone calls when we checked in on our little boy. Every time our phone would ring, I came close to panic, worrying what the NICU might be calling to tell us. It was a long road for that determined little boy to become the robust 10 year old that he is now. A journey filled with doctor appointments, therapies, special diets, ER visits, oxygen, sensory disorder, feeding aversions, sleepless nights, and fear. There was always fear on that daunting road of raising my first child.

Joshua had a daunting task ahead of him. He was to take over for Moses and lead the people into the Promised Land. But there was one problem: the Promised Land still housed the enemy! I can only imagine that Joshua felt intimidated and afraid to fill the shoes of Israel's beloved leader, Moses. Moses, the man who spoke to God face to face. Moses, the man who was considered to be God's friend. Moses, who led the people through the desert for 40 years. How could Joshua ever take his place? How could Joshua conquer Israel's enemies and take over the Promised Land? But God doesn't want for us to be afraid. He tells us through the story of Joshua, to be strong and courageous! Do not be afraid! God will never fail us or abandon us, but will be with us wherever we go. When God repeats Himself, we know the words He speaks are important. Three times in these three little verses, God repeats these words: "Be strong and courageous!" God does not give us fear, rather, He says that perfect love casts out all fear. God's perfect love for us casts out fear.

I find it so easy to let my worries overtake me. It's easy to focus on our fears over our faith, especially when we are faced with medical challenges, IEP's, sleepless nights, and difficult days. Fear and worry can be relentless. But God doesn't want us to be afraid at all! God does not want me to fear the future, or worry about the present, or face anxiety from the past. God wants us to draw near to Him because He will be with us wherever we go. How we do move from the place of worry and fear into the place of peace and love? How do we evacuate the fear enemy from the Promised Land? By continually reviewing the Word of God and by constantly renewing ourselves through God's Promises, drawing closer to Him one little step at a time. God can replace our fear of the unknown with peace in Him. Whether we're leading a mission team into a foreign land or piling another load of laundry into the washing machines, God is with us!

Dear God, Please renew my faith and conquer my fear! Help me to focus on You instead of the worries and anxieties that weigh me down. Most of all, help me to know Your constant Presence each and every day. Amen

Amanda Furbeck

Monday, September 25, 2017

Typical Siblings, Much Fruit

But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control...
Galatians 5:22 ESV

Do you think about how your child’s disability has affected your family? If you are anything like me, you think about it fairly often.

Thinking about Liam’s disabilities is a necessity when we try to plan activities.  I have to think of how he will react to stimuli, how his wheelchair will fit into places, and where/if we will be able to change his diaper if we are someplace for more than a couple of hours. I feel sad when we can’t do things as a family because they aren’t accessible or would be upsetting for Liam.

When my little girl plays pretend with her friend and they discuss their siblings’ disabilities, my heart aches and swells at the same time. When my eldest discusses medical interventions and therapies as easily as some kids discuss movies, I feel a conflicted pride and sadness. 

If you were to draw a wheel depicting our family, Liam would be in the center. The family only operates well when his needs are met and he is content. If any of the spokes break or fall off, the wheel cannot turn. When Liam is sick or unhappy, we all go into a sort of “survival” mode and everyone works to help him. Perhaps your family is similar to ours in this way?

Last week our family attended an Autumn event for children and families with special needs. At the end, we were invited to go into the orchard and pick 6 apples to take home. The orchard was a very young one. We would be the first people to pick fruit off the rows of small trees. As we approached the row of tiny trees, I expected to find only a few apples. I was so surprised to find that the small trees were bursting with beautiful red apples. After each person in our group picked 6, there were still trees full of apples left. 

When I think of how Liam’s disabilities affect my children’s lives, it’s usually the hard things that I am thinking of. It is easy to see all of the ways that families without disabilities have an easier life. I forget that God is growing these girls for HIS purpose. He is using the circumstances in their lives to glorify him. Through their love for the Lord, their love for Liam, and the circumstances that Liam’s disabilities bring into our lives, God is pruning them into the very trees that he needs them to be. He always has their eternal good in mind and is working toward that.

My girls are like those little trees in that new orchard. They are young and people may approach them expecting only small things, but through the Lord, they are full of fruit. I see this in so many ways in their kind, generous, and sympathetic personalities. I see it in the way that they notice a child who has hurt feelings and extend kindness. I see it in the way that they acknowledge the elderly and hold doors for others. I see it in all of the little ways that they care for their brother and put his needs ahead of their own on a regular basis. God put this precious boy and these precious girls into this family with His good plan in mind. The same is true for your family.

The Message says, 
“But what happens when we live God’s way? He brings gifts into our lives, much the same way that fruit appears in an orchard—things like affection for others, exuberance about life, serenity. We develop a willingness to stick with things, a sense of compassion in the heart, and a conviction that a basic holiness permeates things and people. We find ourselves involved in loyal commitments, not needing to force our way in life, able to marshal and direct our energies wisely.” (Galatians 5:22)
Dear Heavenly Father, Please be with our families. Strengthen our children and guide them so that they can grow beautiful fruit for you.  Amen.

Sunday, September 24, 2017

Share a Little Love — #SacredSunday

Life beats up on each of us more than enough. The world could definitely use more kindness. No matter what your circumstances, God wants you to share love and encouragement with those around you. Will you answer the call?
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Friday, September 22, 2017

"Special Needs" or Human Needs?

God created humankind in His own image, in the image of God He created them, male and female He created them. (Genesis 1:27, NET)

There are so many misunderstandings, false perceptions, and judgments concerning the sphere of special needs; physical, intellectual, and invisible disabilities.

Ever since Bethany was born God has used her humanity to teach us some wondrous truths: 

Everyone is fearfully and wonderfully made.
We are not so much different as alike.
Not one of us are whole, perfect, or invincible.
ALL of us need a Savior.

While blogging, I’ve spent a lot of energy and words trying to convince people that “they” are just like our daughter, Bethany (who has Down Syndrome) because we ALL have special needs. But what if I have it backwards???? What if everyone isn’t like Bethany, what if Bethany is like everyone else? Instead of labeling "needs" as special, maybe we should label them as human needs! 

“Special” should be word that sets you apart in a positive way. When Bethany was born, I can’t count how many times people would come up and say, “God gave you a such special child because He knew you were such special parents.” I inwardly shuddered and revolted against that word, "special." 

ALL our children are special.

Down syndrome didn't make her more special. She is special because she's our child, created in God's image, with less-than-perfect DNA (just like all of us). Linking the word "special" to Down Syndrome instead of her personhood seemed like a slap in the face considering the potential future we might be facing.

Is it “special” to have potential heart problems, learning challenges, inclusion battles, possible speech impediments, hearing difficulties, and an increased chance of Alzheimer's? 

Is it "special" to have to fight for an inclusive education, opportunities for jobs, a fair wage, friends, understanding and respect as a person?

Which brings me full circle and prompts this question:

Are these “special needs” or basic human needs?

Everyone has special needs. Everyone is challenged. Everyone is disabled. Everyone is human (despite that Peter Sanger wants to label the disabled as "sub"human!)

No one has special needs, just human needs. 

Instead of labeling our challenges as special, maybe we should just label them as “human.”
Our human needs are as varied as there are stars in the heaven. Individual and distinct. The Good News is there is One who loves and accepts us in all our brokenness but who loves us too much to leave us there. Our Father in Heaven is in the redemption and restoration business. He’s committed to meeting each and every one of our human needs through Jesus Christ.  

Our human needs will be one day be fully met and satisfied in Jesus Christ. In His presence we will know fullness of joy and perfect shalom — mind, body, and spirit. Now that, THAT will be really special!

Prayer: Father God, Help us have eyes to see the needs and challenges each and every person faces. Help us respect and give dignity to each person, compassion and truth. And when we see needs that are greater than our own, help us understand and offer compassion and help.