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Dear Special Needs Parents
Jessica Hurlbut • November 4, 2020
Dear Special Need Parents,
As infection rate creeps upward across the country and you continue to shelter in place, I see you.
I see you chasing your child around the house, cleaning up smeared yogurt and tripping over toy avalanches, all the while trying to keep your cool. I see your coffee still sitting in the microwave after you have attempted to reheat it five times and still have not had a sip. I hear you mumble under your breath and complain to your spouse, “I CAN’T KEEP DOING THIS!”
I see you.
I know the pain of scrolling through Facebook and seeing all your friends camping and vacationing. You should be excited for them, but jealousy seeps into your heart like a poison. You attempted to go to the park yesterday and that ended in a meltdown, so vacation is out of the question.
I see you.
I know how many times you have Googled self care, only to come to the realization that most of the recommendations aren’t humanly possibly for you.
“Suggestion One: Take a day off and head to the spa.”
You laugh like a madman and roll your eyes. Never going to happen!
I see you.
I see your hopes dashed as they cancel summer school. Your greatest fear has come to pass, as you watch your child regress and you are powerless to fix it. I know how exhausted you are, yet you lie awake at night mulling over the governor’s latest address regarding education in the fall.
I see you.
I know how inadequate you feel. You can’t give your child the education they need. You can’t possibly be a mom, a special ed teacher, an occupational therapist, a physical therapist, and a speech instructor all-in-one. To top it off, you don’t even feel like a good parent. You yell more than you care to admit. Your child spends hours in front of the TV or on their iPad inorder for you to remain sane and make it through another day. You measure yourself against parents of typical kids, and you always fall short.
I see you.
And although I don’t have ANY answers and I have no idea what the future holds for your child, I want to convey this one message:
YOU ARE NOT ALONE.
I spent last week ministering to the homeless in New York City. It was a sweet time but the hustle and bustle of the city still surprises me. Everyone’s in a hurry. Everyone’s busy with their super important agendas and their super private lives. No one looks you in the eye. And greetings of hello are not reciprocated. It’s kind of depressing. But this week, I flew over the Big Apple to attend a conference and I was dazzled by the city from above. I couldn’t hear the blaring car horns or see the bumper to bumper traffic. Rather, the twinkling city resembled Christmas lights; headlights gleamed white and brake lights blazed red. From above, I couldn’t observe the crowded streets or catch the rude comments. I only heard the gentle hum of the plane as I viewed the glory of the night sky through my porthole window. Then a thought hit me: this is God’s view. He sits above it all. He’s not anxious. He’s not in a rush. He’s simply enjoying the beauty of HIS creation. It’s was a tender moment until a twinge of guilt gnawed at me. God’s perspective is nothing like mine. Some of my worst moments as a human happen when I attempt to get my kids out the door for school. I’m always in a rush. Always bickering with my children to get their shoes on. Always pushing people to hurry up. Always stressing to get all the things done while hurling stones at the most precious people in my life. I can’t count the number of times I’ve dropped my kids off at school with a snarky comment or an angry tone. “Hurry up! I’ve got to get to work on time! You’re gonna make me late, AGAIN!” (Mind you, I work at a church and I’m stressing about being late for morning prayer. ) If we’re honest, our hurried pace speaks less to our jam-packed schedule and more to our lack of trust in a God who sits outside of time and holds the world in his hands. God not in a rush. Why should we be? As the author John Mark Comer puts it: “Hurry kills relationships. Love takes time and hurry doesn’t have it. It kills joy, gratitude, appreciation; people in a rush don’t have time to enter the goodness of the moment.” So, my prayer for you today is this: May you slow down and simply enjoy the beauty of YOUR creation.
“There’s no heartbeat, ” the doctor explained. We had received this devastating news two weeks prior, but we hoped and prayed the machine was faulty or the baby’s heartbeat was too early to detect. So, we returned for another ultrasound, begging God for a miracle. But we didn’t get one. Grief is funny. One minute you think you’re fine and the next minute it sneaks up on you. One minute you’re laughing with friends at a restaurant and the next minute you’re in the bathroom stall drying your tears with cheap toilet paper. A family member asked me the other night if I was over my miscarriage. A miscarriage isn’t something you get over. It’s not a cold. It’s a child. It’s a future you envisioned. It’s a gift from God that almost happened. And I think that’s what makes it so hard—the almost part. The possibility was closer than my next breath. I don’t blame them. No one really knows what to say when someone suffers loss. They fumble over their words while we try to cover up our bullet holes with bandaids. The truth is, we hide our wounds because no matter how much someone loves you, they don’t really want to see them. They desperately want us to feel better. They want us to smile—to laugh and joke and act like everything is okay. But sometimes it’s not okay. Yet there is one person who actually wants to come close to our wounds. His name is Jesus. The Bible says that “The Lord is near to the brokenhearted; he rescues those crushed in spirit.” (Psalm 34:18) The Message translation puts it this way: “If your heart is broken, you’ll find God right there; if you’re kicked in the gut, he’ll help you catch your breath.” The Hebrew word for God drawing near is karov , which means “close enough to touch.” In our pain, Jesus rushes to our aid. There is an intimacy with Jesus we can only experience in our brokenness. The Apostle Paul calls it “the fellowship of his suffering.” I’m not sure that’s a club I want a membership card to. But there is a depth of love we can’t comprehend unless we allow him access to our wounds so he can do what he does best. With a medic bag in hand, Jesus approaches. “ You don’t want to see this, Jesus. I’m a mess.” “ Yes, I do,” he insists as he pulls out the gauze. “You said you wanted to know me more.” “But I didn’t think it would hurt this much.” “I know, me neither.” Jesus whispers as his nail scarred hands wrap your wounds. We ask to be Jesus’ hands and feet, but we often forget what those hands and feet have gone through.
The Cornish pasty is a meat pie. Now as a kid, the idea of combining the words pie and meat together seemed like a mean trick. But fast forward thirty years, and Cornish Pasties are a Hurlbut Thanksgiving tradition. Pasties are known and loved throughout Great Britain. It's believed the pasty originated with Cornish tin miners who, unable to return to the surface at lunchtime, could still enjoy a hearty meal. With their hands often dirty from a morning's work, the pasty could be held easily by a "handle" at one end of the thick pastry crust, avoiding contaminating the pie. When laborers immigrated to the United States, they brought the pasty with them; Michigan's Upper Penninsula is also well-known for pasties. Maybe you're like us and you're not a huge turkey fan, or maybe you just want to try something different this holiday. I hope you enjoy this awesome recipe and please email me back if you try it!!! Crust Ingredients: 5 cups of flour 1 1/2 tsp of salt 2 1/2 ounces of shortening 1 stick of unsalted butter (cold) Pie Filling: 1 cup cubed skirt steak 1 cup diced rutabaga 1 cup diced potato 1/2 cup diced onion Seasoning Salt Pepper 4 brown gravy packets 2 eggs beaten Directions: Place the flour, salt, and butter in a large bowl. Using your fingertips, rub the butter into the flour and salt until the mixture resembles fine breadcrumbs. Work as quickly as possible to prevent the dough from becoming warm. Add 2 tablespoons of cold water to the mixture and, using a cold knife, stir until the dough binds together. Add more cold water, 1 teaspoon at a time, if the mixture is too dry. Wrap the dough in plastic wrap and chill for a minimum of 15 minutes or up to 30 minutes. Gather filling ingredients and preheat the oven to 425 degrees. Divide the dough into 6-8 balls and flatten them into 6-7 inch circles with a rolling pin. Place the steak, potato, rutabaga, and onion in a large mixing bowl and combine. Season well with salt and pepper. Divide the meat mixture evenly among each pastry circle and place it on one side.Sprinkle with the gravy packet and brush the edges with the beaten egg. Fold the circle in half over the filling so the two edges meet. Crimp the edges together to create a tight seal. Brush each pasty all over with the remaining beaten egg. Place the pasties on a greased backing sheet and bake for 20 minutes. Lower the oven temperature to 350 F and bake another 20 minutes until golden brown. Serve hot with gravy for dipping. ENJOY!
Some days are going to be so hard that you’re gonna want to quit. You’ll want a new husband. New kids. A new job. Basically, a different life. But you can’t stop running. When I was training for a marathon, there were times every step I took resulted in a sharp pain that would radiate from the sole of my foot all the way up my leg. Every. Step. Hurt. Everything in me wanted to quit. My mind would argue, “Why am I doing this? It’s a waste of time. It’s not worth the pain.” But guess what? Your family IS worth the pain. Your marriage IS worth the pain. Your calling IS worth the pain. And the next time I went out for a run, I could go further and faster than I had before. This is how we build endurance. The biblical word for endurance means to abide under a heavy weight. What if when you feel the weakest—when you’re legs are burning and your faith is is shaken—that’s the moment you’re actually getting stronger? This is exactly why the Apostle Paul proclaimed, “When I am weak, then I am strong.”(2 Cor 12:10) God doesn’t need you to run fast, to run hard, or to win a race. The only thing required of you is to REMAIN in the pain rather than trying to find a way to escape it. “For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.” (James 1:3-4)
M ost Sundays, my husband stands alone at church. A pastor. A husband. A father of five. Yet most Sundays, he stands alone. The circumstances of our lives prevent us from bringing our two kids on the severe end of the spectrum to church. Sometimes, I stay home. Other times, my teen son holds down the fort. But most Sundays, my husband stands alone. Maybe you’re standing alone too. Maybe you’re the crazy one who gets up early on Sundays and heads to church. You pray at meals or during bed-time routines while the others roll their eyes. Or maybe you stand alone as a parent, shouldering a burden one person was never meant to bear. You desperately try to fill in the gaps, but you’re failing left and right. Or maybe you stand alone on the battle field of faith, contending for something that others call make believe. Maybe God has placed a dream in your heart, a vision in your soul, or a calling on your life that the rest scoff at. Maybe you stand alone—but that’s all God requires of you—to stand. World War I was a war fought in the trenches. These trenches provided protection from the enemy. But early mornings were prime time for surprise attacks. So each day, an hour before dawn, soldiers were given the stand-to order. All men in the frontline were commanded to stand on the fire-step with their rifles in hand, watching for the enemy’s advancement. In our darkest hour, God calls us to climb out of the trenches and stand at attention—chin up, chest out, shoulders back, stomach in. Jesus isn’t recruiting professional fighters. He’s looking for good standers. It’s the most unfair tradeoff in history: If we STAND for him, the God of the universe FIGHTS for us. So, crawl out of the trenches, dust the gravel off your knees, and stand. It’s always darkest before dawn. And I promise you, we win this war. “Therefore put on the full armor of God, so that when the day of evil comes, you may be able to STAND your ground, and after you have done everything—STAND.” (Ephesians 6:13)
I ran into Tim Horton’s the other day while my daughter Mara rocked out to music in the car. I pulled into a handicap parking spot in order to keep her bobbing head in my line of vision from the checkout counter. Two women in the line ahead of me noticed Mara flailing about in the passenger seat. “What is wrong with that girl?” the first asked with a look of disgust on her face. The other woman laughed and said, “Wow! I have no clue what is happening.” I should have spoken up. I should have defended my daughter and gave those women a lesson on autism awareness. But I didn’t say a word. It isn’t often that I get to hear people speak so openly about my special needs child. Those conversations are usually whispered or said behind closed doors. I didn’t feel embarrassed for Mara or myself. I’m way past that stage. I just felt sad. Sad that the world will never understand her. Sad that no matter what I do, I can’t stop the stares or the whispers. Sad that when we walk into a public setting, the whole place pauses for a moment to feel bad for us. Sad that unless Jesus does a miracle in her life, Mara will never work, never marry, or never live independently. Sad that 90% of her time is spent alone in her room on her iPad. And sad that she likes it that way. Sad that so many parents are walking this same road. The newest statistic is that 1 in 36 kids are diagnosed with autism. Life on the spectrum can feel so isolating. But you’re not alone. I’m right here with you. God’s right here with you. Even in our sadness. “The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.” (Psalm 34:18)
M y husband and I got into a heated argument while at a family reunion. He stormed off and I sent a nasty text vowing not to speak to him the rest of the day. Ten minutes later, I needed Tylenol, which meant venturing down the winding roads of the Pocono Mountains in search of a pharmacy. I was unfamiliar with the area and didn’t want to go alone, but the last thing I was going to do was ask my husband to drive. As I headed out the door, I heard footsteps behind me. I turned to find my father with his hand out. “Give me the keys. I’ll drive.” “Dad, I’m 41 and I know how to use Google maps. I’ve got this.” “Give me the keys. These roads are tricky and I know exactly where you need to go.” So, I reluctantly sat in the passenger seat and as I did the tears began to flow. I dug my sunglasses out of my purse in a futile attempt to cover up my emotions. Some pain is so deep that every time you think a certain thought it feels like a dagger plunges straight into your heart. The thought that kept piercing mine was this: “No one cares for me like he does. I’m 41 and I still need my dad.” There is a love a father can give that no other human can offer. No spouse can be a substitute. No family member or friend can replicate it. It’s a protective care that mirrors the heart of our heavenly Father. 1 Peter 5:7 says, “Give all your worries to God because he CARES FOR YOU.” The Greek word for “cares” means to be concerned for, interested in, and worried about. God is not just aware of what your are facing. He is not just interested in your life. He CARES for you. He is the kind of father who stays up late and worries sick when you’re not home. Unable to sleep, he sits on the edge of the couch and stares out the window. He counts the tick of the second hand as he anxiously waits for your headlights to pull into the driveway. And he’s not mad. He simply wants you to hand him the keys and climb into the passenger seat. Not because he is controlling or overbearing, but simply because he wants to protect you, to lead you, and to supply all your needs. But here is the kicker, you have to accept his care. He’s a gentlemen and he will never force his will upon you. He simply stands behind you with his hands open wide and says, “Give me the keys. I’ll drive.”
I never expected my life to be this hard. It reminds me of when we started house hunting as newlyweds. I was bursting with excitement at the possibilities. I strolled up the walkway of a cute home—envisioning my future—only to realize the utter disaster that awaited me inside. The previous owner was a hoarder and the entire house needed to be gutted. Looks can be deceiving. The exciting life we anticipate often feels like a giant letdown. I can’t count the number of times I’ve cried myself to sleep thinking, “l want a different life, Jesus.” But Jesus doesn’t want to buy you a new house or give you a different life. He’s not in the house-building business, He’s in the restoration business. My husband told me to ignore the shag carpet and the hideous paint job and see the potential. This is what God does best. He looks past your broken places and sidesteps your heartaches. He’s not staring at the tacky wallpaper but his master plan. Brick by brick, he begins rebuilding your life. He stacks the loss and pain of the past alongside his goodness and grace. Both are necessary materials in the home He is restoring. Your life will look completely different than what you envisioned. And as he begins the demolition process, it will probably look worse before it gets better. But sometimes we have to let go of the life we envisioned and let God do what he does best: flip houses . I never imagine my life to be this hard—but I never fathomed it would turn out this beautiful. “ And we know that God causes EVERYTHING to work TOGETHER for the GOOD of those who love God and are called according to his purpose .” (Romans 8:28)
Hey Jesus, I have no clue what to do. I pray and pray but hear nothing. One minute I’m certain of a decision only to experience whiplash a second later and second guess myself. I want to do what you want, Jesus—I think. And to make matters worse, there are so many different opinions swirling in my head; Family, friends, strangers online. I feel seasick as I ride the waves of indecision. Jesus, calm my mind. Speak to my heart. Silence my doubt. Show me the way. My Child, It’s not your job to calm the storm in your mind—it’s mine. Remember when the waves slapped against the fishing boat on the Sea of Galilee? The hail and rain were so thick, the disciples could not see their own hand in front of their face. In moments when you can’t see me through the storm, trust I’m coming towards you. Stop rowing frantically. Stop making lists and trying to figure it all out. Put down your oars of logic and reason and just wait. You don’t have to find me. I’m coming to you. Strain with eyes of faith, I’m on my way—walking on the sea. And when I come, I will climb into the boat and with one word, the raging waters stop. Your mind will be at peace. The waves will die down and the sky will clear, and you’ll know exactly which way to go. You don’t need answers. You need me. Just wait. “If you need wisdom, ask our generous God, and he will give it to you. He will not rebuke you for asking. But when you ask him, be sure that your faith is in God alone. Do not waver, for a person with divided loyalty is as unsettled as a wave of the sea that is blown and tossed by the wind. Such people should not expect to receive anything from the Lord. Their loyalty is divided between God and the world, and they are unstable in everything they do.” (James 1:5-8)
I think I secretly suffer from ADHD. I can’t seem to sit still. I’m always chasing after something new and I manage to lose everything. I think I lost my peace in the bathroom stall of Target three years ago and I've never been able to find it since. Last week, God spoke to my heart: “You spend your life pursuing so many things. But there is one pursuit you've neglected—the PURSUIT OF PEACE.” In my defense, pursuing peace as a mom is like trying to find a needle in a haystack—blindfolded, spun around fifty times, with your hands tied, and multiple children hanging off of your back like monkeys. Yet I’m reminded of the story when Jesus was sleeping in a boat with his friends in the middle of a tsunami. The boat was taking on water, they were all about to die, and Jesus was found snoozing. How does he do it? There is no storm that rattles him. No chaos too loud to shake him. I used to think peace was something granted. All that was required was to turn to your neighbor, shake his hand and repeat, “Peace be with you”. Or if I prayed hard enough, angel dust would fall from the sky. land on my stressful situation, and it would magically dissolve before my eyes. Yet the dust never fell and the chaos kept mounting. But what if peace isn’t something that can be found? What if peace must be FIERCELY PURSUED? “Whoever desires to love life and see good days…let him turn away from evil and do good; let him SEEK peace and PURSUE it.” (1 Peter 3:10-11) The word seek in Greek means to search for something lost. Yep. That’s it right there. I have lost my peace. Maybe you have too? Take one look at the world around us: the news, the government, racial tension, the economy, inflation, and gas prices. It all screams conflict and unrest. There is zero peace in this world. So, if peace can’t be found outside of us, we must seek to find it within. The Greek word for pursue means to do something with intense effort, to pursue a hard thing that tends to flee. In order to obtain peace, relentless determination is required. But how do you pursue something so abstract? To be honest, I’m not quite sure. But here is some practical advice I’m implementing in my own life to relieve the pressure and actively pursue peace. SAY NO A LOT MORE. I have said no to more people in the last week than I have in my entire life. No to dinner plans, no to crazy sports schedules, no to phone calls, Zoom calls, emails, and text messages. No, no, no, no! No lengthy explanations necessary. LOWER THE BAR. I’m a high achiever and I like to be productive. But guess what? Sometimes it’s ok to not accomplish as much as you once did. Admit you’re stressed and then release yourself from some of your own unrealistic expectations. LEARN TO JUST BE. One of the best prayers prayed over me went like this: I feel God wants to remind you of Psalm 46:10 - “Be still and know that I am God.” "Actually, I feel God just wants you to “Be still and know…” Wait, I hear him say, “Just be still…” Never mind, He said, “Just be.”