Special Needs Mom, How Are You Doing this Mother’s Day?
Special needs mom, how are you doing this Mother’s Day?
Has anyone ask you that question before? Has anyone acknowledged that your feelings may not match what cards and commercials make them out to be? Have you had the courage to acknowledge, even to yourself, the swirl of emotions that surround you as the second Sunday in May approaches?
Joy.
Loss.
Love.
Grief.
Wonder.
Fear.
Gratitude.
Guilt.
I felt all those emotions as Mother’s Day and our son’s first birthday arrived within weeks of one another in 1983. I was a wreck that May––exhausted, worried, depleted, and unable to think straight. Though our son is now an independent adult, those early emotions tend to resurface each May. As our son got older, I became wiser about how to acknowledge my feelings and celebrate being a mom without letting difficult emotions rule the day. I hope these 5 lessons help you do the same.
Lesson #1: Enjoy your Child
Your child is a wonder, perhaps not the wonder you expected, but wonderful all the same. Take a moment to enjoy who your child is––or who she was if she’s no longer physically present. What about her makes you laugh? How does she surprise you? Why is your world better because of her? What has she taught you about love? Let your answers increase your joy in the wonderful aspects of her life and lighten your heart.
Lesson #2: Make Room for Grief
The joy your child brings is real and so is your grief. This Mother’s Day weekend make room to acknowledge this emotion for what it is––the loss of many dreams. Dreams of what parenting would be like. Dreams of how your child’s development would progress. Dreams of celebrating milestones. Write your thoughts down. Tell God how much your heart hurts. Admit how hard your grief is to bear. God knows a thing or two about loss and heartache. Let him hold you as you grieve.
Lesson #3: Put on your Mama Bear
Not the kind of mama bear who destroys everything in her path to protect her child, but the kind who uses her strength to advocate for her child, her family, and herself. This can involve big things like advocating with doctors, therapists, schools, and churches regarding resources and accessibility needs. It can also mean being the mama bear who lets other people in by introducing herself and her child to other moms and kids at the park. By joining an online or in person support group for parents of kids with disabilities. By taking advantage of a neighbor’s offer to come over with coffee and cookies to get to know her and her child.
Lesson #4: Anticipate Adventures to Come
Thinking about the future was tough when my husband and I were busy keeping our son safe and alive. I wish I could go back to Mother’s Day 1983 and assure the woman I was then that the future held both struggles and adventures. I would want her to know that the adventures yet to come were rooted in the hard stuff our family was experiencing then. The same is true for you and your family. Since anticipation is part and parcel of future adventures, start dreaming about what’s yet to come now!
Lesson #5: Trust the God Who Is Both Parent and Child
You may not understand why God allowed your child’s disability and your parenting journey. God, however, fully understands why Mother’s Day is a mixture of joy and grief for you. He has been where you are. Cling to that truth even as you doubt his kindness and are angry with his ways. Cling to this promise that held me fast when I couldn’t hold onto him. I am praying it for you this Mother’s Day.
He who did not spare his own Son, but delivered him for us all,
how will he not also graciously give us all things?
Romans 8:32 (NAS)
Written by Jolene Philo
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023. The audio version of Book 1, See Jane Run! See Jane Run!, was released in November of 2023.
4 Steps for Navigating Fear
With everything going on in the world with Covid-19, we have a lot more unknowns and a lot more fears. How do we navigate these fears? In this article, Jonathan McGuire outlines 4 steps to help.
In last week’s article, I shared how fear serves an important role and acts like the warning light on the dash of our car. How did last week go? Did you recognize this warning light going off in yourself, your spouse, or child?
If your answer is yes, then you may be wondering what to do. Here are four steps to help you navigate your fear and for you to help your family members navigate their fears:
1. Pray & remind yourself of who God is:
Take a deep, slow breath or 20 and share your fears with your heavenly father. Ask Him for His peace and wisdom. Remind yourself of those truths in God’s word about who He is and His character. For example, He is sovereign and all knowing.
2. Develop & implement a plan:
For example:
Determine steps needed to protect your family from getting sick, such as limit social interaction, wash hands, etc.
Establish a new routine – after being somewhere, get in car and use hand sanitizer on hands, inside door handle, phone and wallet before touching the steering wheel
Check into alternative options to meet medical needs, if the need arises
Think of alternative solutions for social engagement
…..
This will not be a one and done plan. As you implement it, you will need to revise it to better meet your family’s needs. There will be items on the list that you won’t have immediate solutions for but part of your plan may be steps to find those solutions.
3. Find a community:
Fear becomes more paralyzing when we go through it alone. Find a community that gets it but be aware of the culture of that community. You become like the people you spend the most time with. If the community is negative and not hope-filled, that will feed your fear and not reset it.
As a side note, if this is a need that you see in your life, I would like to invite you to join the Hope Anew Online Community. This is a great time to join as we have waived the membership fee. You can learn more at HopeAnew.com
4. Look for ways to bless others:
When we look for ways to be “Jesus with skin on” to others, it can take our focus off ourselves and we can receive joy as we encourage others.
During this time you may need to be creative but it can become a fun family project.
As you are figuring out how to navigate this new season, remember that God is with you. He loves you and your family. He will never leave you and never forsake you.
Written by Jonathan McGuire
Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com. Due to COVID-19, Hope Anew is waiving all membership fees for the community!
Written by Jonathan McGuire
Is It Okay To Fear?
Is it okay to fear?
This is a question I keep finding myself asking, especially with the current COVID-19 pandemic. As I talk with other people and watch posts on social media, I see an unspoken tension between families who are fearful about the current health pandemic and those who say, “Do not fear and be courageous”….
Written by Jonathan McGuire
Is it okay to fear?
This is a question I keep finding myself asking, especially with the current COVID-19 pandemic. As I talk with other people and watch posts on social media, I see an unspoken tension between families who are fearful about the current health pandemic and those who say, “Do not fear and be courageous.”
Families fear for their parents or spouses that fall in the high risk category. Mothers are fearful for their spouses and children who have “essential” jobs and still have to go out. Parents are fearful of losing their jobs or how to provide for their families if they have lost their jobs. Moms and dads are fearful of how to protect their medically fragile children and make sure they have what they need whether that is medication, special equipment or even special food for restricted diets.
I remember standing in church singing, “There’s No Fear In Love.” This is a direct quote from the first sentence 1 John 4:18. The entirety of this passage reads:
"There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love."
Every time I sang this song, I would internally scoff and think, “Really…no fear.” Then I would get irritated as I thought of those who received a new diagnosis for their child and were scared or found themselves in a situation that was out of their control such as a job loss, cancer diagnosis or myriad of other fear inducing scenarios. I would half-heartedly sing through the song and move on.
If you look at the verse leading up to 1 John 4:18, it says the following:
“This is how love is made complete among us so that we will have confidence on the day of judgment: In this world we are like Jesus.”
“There’s no fear in love” refers to the day of judgement. Those who have a relationship with God through His son, Jesus, do not have to fear on the day of judgement.
So back to the original question. Is it okay to fear? Yes…but.
God created our emotions, including fear. Fear can serve a beneficial purpose. It can help trigger that fight or flight response. If a lion starts to chase you, fear pushes you to take action and to try to escape. It is like the warning light on your dash that tells you something needs to happen. If you ignore that low fuel light for long, you will find that your car will stop moving.
That light on your car’s dash makes you pause and put together a plan. You mentally go through the check list of determining how far you can go, when you will fill up and what gas station you will stop at to get gas. A plan is put in place.
Similarly, when fear lights up on our internal dashboard it should make us pause, figure out why it is showing up and then determine our response or action plan.
You may be thinking to yourself, you said, “Yes…but” when you asked if it is okay to fear. What is the “but.”
Have you ever watched a YouTube video or National Geographic show where a giant predator starts to attack its prey and the prey freezes in place? This is when fear becomes bad. When fear becomes all-consuming to the point that we are frozen in inaction.
It is also bad when it becomes chronic. When we live in a chronic state of “fight and flight”, our bodies will respond negatively. It will negatively affect our emotional, physical, and spiritual health.
So what can we do when we see that dash light? Next week we will look at four steps to walk through when we start to feel fearful.
As you look at how you are doing during this time, are there any dash board lights going off? If you are married or have children, do you see any warning lights going on with your family members?
Written by Jonathan McGuire
