The Waiting Room

Before I had children waiting rooms served one purpose.  They were a place to wait.  I’d look forward to those few quiet moments to flip through the pages of a Better Homes and Gardens stashed in the pile of outdated magazines.  I would exhale.  I would zone out.  I would be still.  Then, I would hear my name called and forget I was ever there. 

As a mom, and especially as a special needs parent, I very often find myself in waiting rooms.  However, the waiting is altogether different…

When I’m waiting for my child to complete testing with the school psychologist, or finish a session of occupational therapy, or therapeutic gymnastics, or swimming lessons, the list goes on, it’s never a time of exhale. I am zoned way in.  I am far from still.   It’s often a time of held breath.  It’s a time of anxiety.  I am almost always lending one ear to the task of waiting for signs of the session going awry or hear myself be beckoned to the room.  I can pretend to flip through the pages of a tattered magazine left for waiting parents, but it’s just to fill the time with any kind of distraction.  That is, unless there is another waiting parent there.  That’s when magic happens.

In these places of waiting, special needs parents find each other.  We are all so desiring of community and relationship with people in our same, or similar situation, that when you sit two of us in a room together, we just get to chatting.  A smile.  A greeting.  Then, before you know it, you’ve exchanged stories, you have shed the anxiety that you may have entered the waiting with and are sad when the waiting time ends.  You might, in the case of a recurring appointment, get to see this parent again. You might not. 

Regardless of that, in the midst of these sometimes frantic days, you connected with someone who gets it.  You were given the gift of a pause, a judgement-free exchange and probably even a shared laugh or tear.

I skip out of these chance meetings feeling so heard and so understood and with such an incredibly full cup.  What’s even more magical is when a bonafide friendship begins to form in the waiting room.  I’ve experienced that a few times on this road.  Imagine that, meeting a person in a waiting room, of all places, and bonding nearly instantly over this shared journey.  You just never know who might be waiting with you.  

I can admit that those peaceful days of leisurely and seemingly carefree times of solitude and reflection were nice.  Okay, very nice. They were maybe even dreamy.  I can share too, that this new type of waiting is far more fulfilling. 

If you find yourself waiting nervously for your child to finish up their speech session, pick your head up from that magazine, or from your phone, and look around that room.  Drum up some conversation with the parent next to you.  Even if it feels clumsy or awkward at first, don’t let that stop you.  Push through and take a chance. Odds are they are desiring connection, too.  You will both be blessed by interacting, and you may just make a treasured new friend.  

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

Not Alone

I have often felt lonely as a mom.  It’s a weird feeling when you are always surrounded by little people to also feel so alone, but I’m rarely really alone. Sometimes the depth of my loneliness as a parent feels suffocating. 

Who could possibly understand this feeling?  Truly, I am not alone.  In Isaiah 7:14 and Matthew 1:22-23 we are introduced to the idea of God being Immanuel, God with us.  This idea of God being with us is an idea I quickly took comfort in. Knowing I was seen by God in my struggles brings me deep comfort for my loneliness.  God is so many things, but having God with me is a place to take shelter. 

The depth of God’s desire to be with us is so strong that He has sacrificed his Son to bring us closer to him.  God is our shelter, protector, healer, comforter, loving father, He is wise, loving, faithful, unchanging, merciful, gracious, creative and he is all these things with us.   

There are so many times my children want me with them.  They want me to protect them and comfort them, show them affection, give them affirmation and remind them that they are loved.  Even though I am an adult I still long for those same things. 

God with me, Immanuel, is where I can find the love, affirmation, protection, healing and strength to be filled and continue to pour out to my children.  My oldest daughter struggled to learn how to ride her bike without the training wheels.  She worked tirelessly for 2 years to be able to ride successfully.  The entire time she was working on mastering this new skill she did not want me to let go of her. 

Having my hand on the back of her bike was a comfort she needed. My hand gave her the physical stability she needed, increased her confidence, and was a huge comfort to her.  Sometimes I want to have someone’s hand on my back as I walk through scary or new situations. I want to have God’s hand on me to increase my confidence as I interact with my child’s educational team at her school and ask for accommodations that will benefit her.  It can feel so lonely to navigate the series of waiting rooms and overwhelming to read the educational and behavioral reports on my daughter. In these challenging situations I am not alone.  I have God with me, offering similar comforts to the familiar hand that guides my daughter on her shaky bike.  

When the Israelites were wandering in the desert for 40 years, God guided them.  God led them as a pillar of fire and a cloud of smoke (Exodus 13:21).  Wandering. For 40 years. And God was with them as a visible presence.  Do you ever feel like you might be wandering in a desert?

I remember before we began our process of getting our daughter identified, I felt lost, wandering, disoriented.  I would move from one failed parenting attempt to another.  Reading blogs, books and anything that could help me feel like I had a handle on how to connect with my daughter.  I was not lost, nor was I wandering, I was being guided.  Do you know what the Israelites did as they wandered following this mystical cloud and fire?  They doubted, they complained and they felt that they were never going to make it out of it.  I have been there, complaining, doubting and feeling like I would never make it out.  Although my daughter’s challenges are quite mild, to see your child struggle in any way is painful.  Navigating this with God is a huge comfort. 

God deeply desires intimacy with us.  He wants to be with us in all situations.  God wants us to go to Him for our needs before we go elsewhere.  God wants to sit with me in the unknowns and the frustrations and also wants to celebrate with me when we have success.  We are his beloved children and he would rather we spend time with him then be busy, worried or distracted.  God with us, Immanuel, is an unending relationship with our creator. Immanuel is seeking us, waiting for us and guiding us into a deeper relationship with him.  This relational time brings joy, peace, comfort, strength and more.  We just have to be willing to be with Him. 

To grow closer to God we should go to God in prayer, walk with God, sit quietly and learn His loving, guiding corrective voice. Studying His word is how we grow closer to the God in us, the God with us, the God who sees us, the God who loves us and the God who deeply wants to be in an intimate relationship with us always.

Fear not, for I am with you; Be not dismayed for I am your God.  I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Romance, A Divine Design

As I shared last week, I’m a complete romantic. To my core. I love romantic books and movies. December rolls around and I get excited about the sappy movies that will soon be on television. Jonathan teases me saying, “Let me tell you what happens. Boy meets girl. Boy has an ugly sweater. Girl has a problem. It gets solved. They fall in love. The end.”  I grin and say, “Yup, isn’t it great! You want to watch with me?” That usually earns me a kind-hearted eye-roll. Yes, the story line is basically the same in all of them, but I don’t tire of it. I love all things about falling in love

When I find myself longing for something that seems impossible to attain or to attain fully, I find that it often points to a desire placed in me by God that will be fulfilled in eternity. I think romance is one of those longings.

The thing I love about romance is that it involves being known, chosen, desired, completely loved and adored for who you uniquely are. There is no disapproval or disappointment, only delight, delight in each other over all others.

 Throughout Scripture, there are several pictures of God’s relationship with us such as potter/clay, shepherd/sheep, father/child, as well as bridegroom and bride (that translates as “fiancé”). He has proposed. And when He returns for us, to bring us to the home He has been preparing, there will be a wedding celebration feast!

Hosea 2:16, 19-20 says, “When that day comes,” says the LORD, “you will call me ‘my husband’.” “I will make you my wife forever, showing you…unfailing love and compassion. I will be faithful to you and make you mine.”

 This story doesn’t just follow the typical plot line, it created the typical plot line. Boy loves girl. Girl has a problem (sin). Boy rescues girl (gives His life, pays the price owed by girl to get her out of her problem – I John 4:10). They fall in love. There’s a wedding!

Are you questioning the falling in love part? Does it feel like a long-distance relationship before the telephone? When the doctor handed you the diagnosis, your child is in surgery – again, you haven’t had a full night of sleep in years due to the breathing machine, your child has no friends and your heart breaks with their pain, when your spouse says, “I didn’t sign up for this” and leaves. It can all feel like God doesn’t care for you at all, let alone that He cares with unfailing love.

If that is where you are at, take time to contemplate that He defines love. He IS love (I John 4:8). He has chosen you and He takes “great delight in you” (Zeph. 3:17). He knows the number of hairs on your head (Matt. 10:30) and collects your tears in a bottle (Ps. 56:8) and promises to one day wipe every tear from your eye and to get rid of death, sorrow and pain forever (Rev. 21:4). How romantic is that!

 

I find that too often I walk through life consumed with my tasks and problems, totally unaware of the things my Fiancé has put all around me to show His love for me and that He’s thinking of me. If His love feels distant, ask Him to show it to you and then keep your eyes open for little things He puts in your path to say, “I love you. You are precious to me. Enjoy this, my darling”. Tonight, maybe look up in the sky and remember that your Fiancé actually did hang the moon for you.

Written by Sarah McGuire, Co-Founder of Hope Anew

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that comes alongside the parents of children with additional needs on spiritual and emotional level.

A God Who Gets It

Do you ever feel so alone and like there just is not anyone who really gets it? It is impossible to explain to someone in passing the realities of what it took for you to be at that place at that moment.  Most people won’t be able to understand what goes into your average week or would not know what to really say when you tell them where you are really at emotionally or spiritually.  When you finally are able to sit down with your friends over a cup of coffee, you find it hard to really enter into the conversation because you are in such different places. You find your priorities are different and discussing vacation plans or home decorating ideas is taxing.

Finding those one or two people who you can really be open with and really share your heart with is so hard. This Easter season I have been reminded that while being a parent of a child impacted with special needs can be really lonely, we have a God who gets it.  He gets it like no one else really can.

Many of us memorized John 3:16 as a child. It says, "For this is how God loved the world: He gave His one and only Son, so that everyone who believes in Him will not perish but have eternal life." It is so easy to just read over that and think how nice it is that God provided a way that our sins can be forgiven and that we can once again have a relationship with Him.  When reading this verse, I have always thought about the cost to Jesus for our salvation and it wasn't until recently that I really stopped and thought about what it cost God the Father.

He knew what restoring our relationship with Him would cost His only son. The Father knew what Jesus would endure when He came to a sin cursed world. He knew that as Isaiah, prophesied in chapter 53, His son would be a "man of sorrows, acquainted with deepest grief" and despised and rejected. Our Heavenly Father heard Jesus' prayer in the Garden of Gethsemane when Jesus was praying so intensely for another option that He sweated drops of blood. He knew that His son would die on a cross after being whipped, mocked and having a crown of thorns placed on His head. This is how I know that He understands what we are going through.  He gets my pain when I see the additional struggles my son faces. He gets my joy when I celebrate the successes.

So this Easter season, while I am celebrating the resurrection of my Savior, I am also celebrating the fact that I am not alone. My Father gets it and I can pour out my heart to Him at any time.

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.

~ Psalm 91:1 (NLT)

5 Things Parents Of Children With Special Needs Want You To Know

Have you ever wondered what it would be like to sit down with the parent of a child with special needs and ask them what it is like? More than likely you would be greeted with a glazed stare, both from exhaustion and from determining if you are safe person to share with. 

They say that the best way to get to know a person is to walk a mile in their shoes.  This really hits home with special needs.  Many parents of children with additional needs have been hurt by well-meaning people who have never been in their shoes and it is difficult for them to really share where they are at with you.  However, if they open up, and I mean really open up, their answers will likely have the following five themes.

• It is really, really (can I add another really) lonely. When plans change, it is not because we are trying to avoid you.  We do value you and want to be with you but our kids are our priority.  We’re sorry we can’t make it to coffee, the guys night out, to the women’s retreat, to the ladies night, or to the family reunion.  Thank you for asking and please keep inviting us. That shows us that you still care.
• It is so hard and exhausting and will be hard for you to have a friendship with us.  We are a package deal with our kids.  It means that we are always in survival mode and never able to relax because something is bound to come up.  It is having to be hyper-vigilant, a strong advocate and on the ready.
• We are just like you. We are ordinary parents. We are not “Super Mom” or “Super Dad.” Please don’t try to encourage us by telling us that “God knew that you could handle a special needs child.” Some days we aren’t handling it very well at all.
• We often feel judged as parents.  We have to be creative and think out of the box.  We know you mean well but please don’t offer advice on how to parent.  As parents of children with additional needs, we have to do things differently.  Please respect our choices. Thank you for being understanding, having extra patience, and compassion.
• It is hard but it is amazing and I am a better person because of my child.  I love them and can’t imagine life without them.

Next time you are in a grocery store and see that mom sitting on the floor, while her child is melting down, let her know she is doing a good job.  When you see that friend with the autistic son, let them know you miss seeing them. Love them and when you are able, be there for them. 

We want to hear from you!  If you are the parent of a child with additional needs, what do you wish your friends and family knew?