When Being Thankful Is Hard As a Special Needs Parent

When being thankful is hard as a special needs parent––and let's not beat around the bush, watching our children struggle doesn't lend itself to loud hosannas––how do we approach Thanksgiving? How do we cultivate gratitude without sugar coating the challenges in our kids' lives? How can we be grateful when a child's condition is going from bad to worse, and we can find nothing to be grateful for?

I stared down those questions more than once when our baby boy struggled to stay alive.

The first time was during my first Thanksgiving as a parent. By then our six-month-old had endured 2 major surgeries, a three week NICU stay, a week long PICU stay, two dozen early morning GI procedures, and an overnight hospital stay on Halloween weekend. I was sleep-deprived, grieving, and my breasts were sore after months of pumping milk for our tube-fed baby who could tolerate nothing but breast milk. The thought of being thankful for my child's precarious state of health and the pain our baby had endured was unimaginable. Cruel.

I couldn't do it.

The week after my thankless Thanksgiving, I did what proud, new parents everywhere do. I composed a Christmas letter, complete with pictures of our baby boy in his elf costume, to mail to the many friends and family members who had faithfully prayed for us since our son's birth. As I reread Luke 1 and 2, looking for a verse for the end of the letter, the story of Jesus' birth came alive for me in a way it never had before. For the first time, I understood the enormity of what God had done in sending His Son to earth to live among sinners and die to save them. I understood that while God knew the good that would come through the death of Jesus, the sacrifice he made broke his heart.

In that moment, for the first time since I had become a parent, gratitude flooded my soul.

 Not for my son's condition. Not for the anguish my husband and I had experienced. Not for our son's life. Not for healing. Not for doctors. Not for modern medicine. Not for the family and friends who had rallied around us. Not for any of the things clueless people said should make me thankful as the parent of a child with special needs.

I was grateful because God, the ruler of the universe, knew my pain.

Instead of commanding me to be grateful, he shared my broken heart. He sat with me. He put his arm around me. He cried with me. He said, "I know. It hurts. Go ahead and cry. Borrow my hankie. Take as long as you need. I'm here for you."

When being thankful is hard as a special needs parent this Thanksgiving, remember that he is here for you too.

He's not asking you to be grateful for the challenges in your child's life. He's not asking you to deny your emotions. He's not asking you to act like everything is okay. He's not asking you to soldier on. He's asking you to lean into him. To cry on his shoulder. To cling to his compassion until one day, a day you can not yet imagine, you realize you have someone to be thankful for.

Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families. Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at  www.DifferentDream.com. She and her husband live in Iowa.

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When Our Faith Falters We Need Faith-filled Friends

If you read You Are Not Alone, you know that I had some significant struggles with questions about God and my faith. There were times I couldn’t muster the faith I knew I needed. I wanted to have faith. I wanted to trust God. But, I didn’t.

Yes, I trusted Him for my eternal salvation, but I didn’t trust Him for how my daily life was unfolding. I felt ashamed. I knew where I wanted to be – at peace and rest in His arms, not worrying about the things of daily life, because He’s got this! But I couldn’t seem to get there on my own.

I claimed, “I walk by faith and not by sight” and said it a hundred times per day some days. Reminding myself that walking by faith doesn’t mean everything works out or makes sense, yet I could trust God anyway. He has a plan. But in reality, I felt more like, “I stumble blindly.” Period. The end. 

This bring me to Mark 2: 1-12. Jesus is preaching at a house and so many people come to see him there’s no more room, not even outside the door.  

You’ve been there, right? An 18-year waiting list for services your child needs. A doctor or therapy that might help, but it’s too expensive and insurance doesn’t cover it. You need rest SO badly but can’t access respite services. There’s help in view, but you can’t get to it.

Back to Mark 2. A paralyzed man arrives carried on a mat by four men. He couldn’t get to Jesus on his own, so four people carried him! I don’t know how it came about, maybe he asked them to carry him or maybe he protested the whole way, “Put me down. I don’t want to be a bother. I’ll be such an inconvenience.” We don’t know. 

They arrived to find the house where Jesus was filled to overflowing. Did his helpers stop there? No. They made a hole through the roof and lowered the man down right in front of Jesus. “Seeing their faith Jesus said to the paralyzed man, ‘My child, your sins are forgiven.’” Because of the religious teachers who were present and their thinking that was a blasphemous statement, Jesus went on to heal the man physically as well!

The phrase that stands out to me in this recounting is, “Seeing their faith…”. “Their,” plural, not “the man’s” or “his” faith, but “their faith”. Whether this indicates all five of them or not, I don’t know. But it does refer to more than one of them. Whether it applies to the man who was paralyzed or only to his helpers, I do not know.  

What I do know is that the faith of the man’s helpers played a substantial part in the man being forgiven of his sins and physically healed. Sometimes, when our faith is weak, we need to depend on the faith of those around us. We need to let their faith carry us for a time.

Do you have faithful friends who can speak words of encouraging truth, said with grace, to you? Do you have friends around you, who, when you struggle in your faith, can pick you up on your mat and carry you where you need to go? That is what Christian community is all about! If you don’t have that or don’t have enough of that, come check out the Hope Anew Online Community and let’s walk this parenting kids with disabilities journey together!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Beauty In The Ordinary

It never ceases to amaze me just how tiring and intense our family life can be, especially if I’m honest when school term is over and everyone has time off. All around us friends and family are heading off excitedly on holidays together – and we also head off, but perhaps with a more complex set of emotions than simple excitement.

Out of routine children in unfamiliar places can be a challenge! Just thinking about the extra energy needed to get us there, and survive the experience makes me tired in itself! You know how it is.

We have just had to be spontaneous (I know, not one of our family strengths) and come home earlier than planned because a weather front plus camping at a Christian festival might not have been the most sensible plan. Its upset all the known plans, and caused anxiety all round but before we left I was sitting in a seminar surrounded by other carers and parents who find hope in Jesus like me, and I was reminded by one who commented that her way of self-care in the midst of caring for others was to notice the beauty in the ordinary.

It struck me, and I have brought that thought home with me. If the weather behaves for us I will pack that thought and take it with us to our next week of camping with my sister and her kids by the coast.

Seeing the beauty in the ordinary, such a simple thing.

And as I think about it, such a transforming thing.

Simply taking time to notice beauty; in an unexpected smile; a flower growing through the pavement cracks; the pattern of the sun bouncing and dancing off the sequins of my daughters T-shirt in the car. There is beauty everywhere we turn, when we notice. But how easy to miss it when we are feeling tired and overwhelmed. Somehow we find ourselves using our energy to anticipate the negatives and the problems round every corner, and forgetting to note the beauty in each other and the world around us.

I am reminded of Jesus’ words to a crowd of worried parents,

“Will all your worries add a single moment to your life? For example why worry about clothes? Look how the wild flowers grow. They don’t work hard to make their clothes. But I tell you that Solomon with all his wealth wasn’t as well clothed as one of them. - have you ever seen colour and design quite like it?” (Matthew 6:27-29)

When we stop and notice beauty, pause just for a moment to take it in, we can’t help but see intricate detail and design, amazing extravagant colours and shapes. They remind me of a Creator who takes care in the details – all the small things, even the things so many of us walk past. He sees them, they make Him smile, they delight Him. He has knit beauty into His world at every turn and every hidden corner, nothing is too small for His attention and care.

I am reminded again that nothing in my life, or in my family is too small for His attention and care either.

He has knit beauty in and through us too. We make Him smile, we delight Him! There is nothing about us, even in our most awkward and ordinary moments that He walks past without noticing. He sees. He smiles.

So, today waking up unexpectedly at home and faced with piles of washing, suitcases everywhere hurriedly packed, the kitchen piled high with shopping done for camping that needs sorting and tidying – perhaps today is a good day to put this into practice! Where is the beauty in all of that? I need to take those moments just to notice and take it in. I need reminding that my God sees, and smiles. He sees the beauty in the ordinary- every time!

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with Him.

Emmanuel, God With Us

The very name of God, Emmanuel, God with us. It leaves me astounded.

We live on this Earth with pain, brokenness, strife, and evil of every kind all around us and bombarding us in the headlines daily.  

In the midst of everything we went through with our son, who was allergic to all food except for sweet potato and on the severe end of the autism spectrum; I found myself questioning God. “God, why did you allow this?” “God, why don’t you stop evil?” “God, where are you?” “God, have you abandoned me?”  I sank into a rather dark and hopeless place.

I questioned and felt lost. I knew what the Bible said. I knew the theological answers. But, suddenly, the questions and answers were no longer hypothetical. You know the hard places too, right? Maybe you’ve had some of the same questions.

Something I forgot in my dark, hopeless space was this – Emmanuel, God with us. It is part of who God is. It is His name. It is part of His very identity.

From the very beginning after creation, when the Earth and people were still perfect, before sin entered our story, God walked and talked directly with Adam and Eve. Emmanuel, God with us.  

Our choice to sin forced a separation between God and us. Yet, He loved us too much to leave us with the consequences of our actions and forever separated from Him. So, He sent His son as a man. Emmanuel, God with us.

He had His only son pay the price of our sin in our place. Emmanuel, God with us.

He sent His Holy Spirit to inhabit His people to act as comforter and guide until His son returns to gather us to heaven. Emmanuel, God with us.

We now have the hope of eternity spent with Him. A God who loves us beyond comprehension. Enough that He came from the perfection of heaven to this sin-cursed, pain-filled, broken, evil world in order to be with us forever. Emmanuel, God with us.

It astounds me. He is the God of the entire universe and being with us is one of His greatest desires. So much so, that it is His name. This Christmas may be a happy, sad, or challenging season for you, but remember that you are not alone. You have a God who loves you and is with you. Nothing can separate you from His love.

 “And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love.  No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.” ~ Romans 8:38, 39 (NLT)

Written by Sarah McGuire, Co-Founder of Hope Anew