Spiritual Leadership for Parents Of: Special NeedsChikamu

Finding Joy On Our Special Needs Journey

I sat rocking my beautiful Shelby one afternoon around naptime. I felt the heaviness of a new journey, and I felt like I was breaking. Tears fell as I slowly rocked back and forth. Focusing on the movement, I took a deep breath and allowed the chatter in my mind to quiet. I felt the whisper of God say, “Just be with me.” I realized, in that moment, that I was trying to make sure everyone was okay, and in that place, I lost what was important. I lost the joy in my journey.

In my defense, I was trying to help my little family thrive in every way possible. However, I was striving to make things alright instead of trusting the Lord to set our paths. I was working so hard to help Shelby reach her therapy goals while at the same time loving on her sister and my husband, cooking healthy homemade food, and keeping a clean house. It was all “crazy making.” I needed to find space again to just let things be. I needed to stop trying so hard. I needed to slow down and allow myself to be a mom, Shelby to be a toddler, and her sister Savannah, to be the most delightful 5-year-old possible.

I started to wake up each morning and give just that particular day to God. I asked Him to help me focus on the beauty of that day, even in the hard. This, of course, was not habitual for me, so I needed help. I hung encouraging scripture around the house. I played worship music and danced with my girls. It took time, but things started to shift.

Joy is a tricky thing. Most of the time, people mistake happiness for joy or use the words interchangeably, yet they are not the same. Happiness comes from our external circumstances. Joy, however, is not based on our circumstances but rather comes from within. It comes from our Heavenly Father and is in alignment with his will. It comes from seeking Him daily and knowing He is good and that we are loved. Joy is not always happy. Joy can look like sadness. It can look like laughter. It can look like beauty in your grief. Our hope is that it does not come and go, but rather we can sit in the joy of the Lord all the time. It is our strength, our hope, our daily rhythm.

Psalm 28:7:“The Lord is my strength and shield. I trust him with all of my heart. He helps me, and my heart is filled with joy.”

My joy comes from my dependence on him.

This is one of my favorite verses! It challenges me daily to surrender it all to Him and to trust Him with Shelby’s medical journey, my marriage, and my other precious children. That is the key for me! I need to remember to try not to control the circumstances but to lean on Him with ALL MY HEART, not just pieces of my day. (Believe me, I can sometimes try to give God advice!)

Now… am I skipping down my street with freshly baked blueberry muffins handing out joy to neighbors??? Hardly! Nope, I still mess up. I still lose it and must apologize to my children. I still find purpose in embarrassing my children with my awesome dance moves and, with a family of 7, my house is in constant chaos and clutter!

Worry and stress:

The thing I must watch most is when the enemy comes in to steal my joy. It usually is on a layered day paired with exhaustion. He uses worry the most, and on the days I feel weak, he swoops in and plants those seeds of doubt. Doubt in who I am. Then he uses exhaustion and hopelessness to spiral me downward. I can find myself in burnout on those days, and not enjoying our journey at all.

This is the word I use on those days…

1 Peter 5:2: “Care for the flock God has entrusted you. Watch over it willingly, not grudgingly - not for what you will get out of it, but because you are eager to serve God”

This is the only “kick in the pants” I need on those days of attack. You see, God entrusted me with this beautiful and imperfect family. If he trusts me, then I know he equips me! He has given me all that I need for this journey and He carries the rest. For this, I can honestly shout “Hallelujah!”

Medical stress:

For the first year of Shelby’s life, she had to be propped upon or strapped to a wedge any time she was lying down. She had such severe reflux that she could aspirate, especially in her sleep. This fear consumed my heart, especially at tuck-in time, which should be so intimate and precious. The enemy would drown me in worry, stealing the joy of this moment.

Therefore, I would use another word:

Psalm 4:8: “I will both lie down in peace and sleep; for you alone oh Lord make me dwell in safety.”

I would recite this over both of my girls every night. It was the only thing that would allow my mama heart to let go and rest.

God is so faithful, and his word is my power in each day. I encourage you on your own personal journeys to seek God’s word and to memorize the ones that give you strength and hope in every circumstance. We are never alone on this journey. It is a blessed and beautiful journey, and it has taught us the power of God’s love. Because of this, we can love…