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.
The Days Are Long, but the Years Are Short
When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”
Written by Jolene Philo
“The days are long, but the years are short.”
I repeat this phrase while I sit on the couch listening to my 7-year-old grandson read for a half hour every evening.
Each time he turns a page, he says something like, “Wow, Grammy! What do you think that is?” or “I wonder what will happen next?” He ignores the words on the page and launches into several winding, imaginative explanations.
My grandson really, really likes to talk. And use his imagination. As for the reading part? Not so much.
Which is why I eventually have to suggest, “Read the page and find out.”
He follows my suggestion––he can read more fluently than he believes––and finds out. Then he turns the page and begins the same process all over again.
To contain my impatience, I whisper to myself, “The days are long, but the years are short.”
One evening as we read, my mind wandered back to when our son was young and medically fragile. When complications arose––maybe he had a fever, refused to eat because of an oral aversion, or vomited his food because of an esophageal blockage––our days were very, very long.
Should we wait to see if he got better? Or worse?
Could we wait until morning to go to the doctor? Or call him right now?
Should we race to the emergency room in our car? Or should we call the ambulance?
Not only were the days long, but also the nights.
When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”
Mom smiled and said, “The days are long, but the years are short.”
My grandson turns a page and explains, “Look at that shark! What’s it’s name?”
His words draw me into the present. I smooth down his honey-colored rooster tail and inhale his little boy smell. He leans into me, and together we sound out a challenging word. He looks up at me and smiles in triumph.
“I’m getting the hang of this, Grammy!”
He is getting the hang of reading, and I am getting the hang of the fickleness of time.
I think of my son, whose early years required several corrective esophageal surgeries before he got the hang of eating and swallowing. He’s a middle-aged man now, healthy and independent.
Where did those years go?
I look down at my grandson and smile,
grateful for this precious half-hour together,
grateful for this reluctant reader’s victory over a pesky word,
grateful his dyslexia that brings us together each night,
grateful for the joy of being part of his life,
grateful for the wisdom gained through the special needs of my son and my grandson.
The days are long and the years are short, and in the eyes of God, both have eternal value.
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 Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.
When The Rug Gets Yanked Out From Under Your Life
The last year and a half has been a doozy for me, and I’d guess it has been for many of us for different reasons. I mean, 2020-2021, seriously? Over this year and a half my personal inner-life journey has taken me on quite a ride and while circumstances have offered up different challenges that haven’t resolved yet, my personal journey has been life-giving…
Written by Sarah McGuire
The last year and a half has been a doozy for me, and I’d guess it has been for many of us for different reasons. I mean, 2020-2021, seriously? Over this year and a half my personal inner-life journey has taken me on quite a ride and while circumstances have offered up different challenges that haven’t resolved yet, my personal journey has been life-giving.
How does that happen? How can we not have circumstances align with what we want or need, yet have our heart, mind, & soul thrive anyway?
I’ll give a caveat that my most basic physical needs were met. I had a roof over my head, heat, food, water, sleep, and my immediate family with me whom I love dearly and who love me. The rest of life, including a house, friends, church, church family, homeschool group, and a significant chunk of our income, well, those were stripped away and my health was already greatly diminished, so that’s where I was a year and a half ago.
How do we move forward when the rug gets yanked out from under us and our life, as it has been, as we liked, as we dreamed of and worked to build, suddenly crumbles? For some of us that day is when our child gets a diagnosis that we know will change our lives forever. For some, a job loss. For some, a support system we depend on suddenly isn’t dependable or even available. What then?
Finding a private place to melt into a pile on the floor and cry it out with a bag of Lindt chocolates (my personal favorite – the chocolate, not the melting into a sobbing mess) close at hand may come first. Screaming to God about it might happen too. Grief – however that looks for you – is important. Acknowledging the pain (in a healthy way – not hurling anger on everyone around us) is critical! If we bury it, it will fester and cause other problems.
After scraping myself off the floor and expressing my feelings and thoughts to God repeatedly, this is what I did. I made a conscious choice that when I stepped out of my beloved house and into my new (not what I would have chosen) residence, I would NOT complain. Complaints would not cross my lips. I could still acknowledge & grieve the sadness of the losses, but I would not complain about the present.
It took several months, but the resolution to not complain morphed into intentionally looking for things to be thankful for – every day. And when challenges arose, to look for what I could be thankful for in the situation. I didn’t deny that it wasn’t ideal or that it wasn’t hard or unwanted, but I’d look for the good in it.
Instead of griping about the hot water running out 6 minutes into my shower, I could be thankful for the hot water I did have and get my hair cut shorter so I could take quicker showers. Guess what, I got lots of compliments on my shorter hair. It suits me better!
Instead of complaining about things breaking, falling off, or getting damaged on our new home (an RV), I could focus on being thankful for a resourceful, capable, problem-solving husband and it became part of the adventure.
One of the latest examples, I was commenting to a friend how I felt bad for my kids and how they weren’t getting to experience a typical (even typical for homeschool) high school experience with friends close by, sports, group activities, etc. during these critical years. She graciously called my attention to all they are getting to experience. A few hours later as I reflected on the conversation, I realized an unfavorable trait (that isn’t the kind that can be overcome with teaching or training) that had characterized one of my sons a good part of his life had completely disappeared over the previous year. Oh my, I’d been focused on what my husband and I weren’t able to provide for them and what I thought was lacking and instead there was so, so much he had gained that was worth invaluably more!
I have a long way to go in overcoming my negative thinking and making thankfulness my default, but one day at a time, I get closer to that goal!
How about you, have you ever taken a period of time to intentionally focus on annihilating complaining and to be purposefully thankful? How did it go? What happened?
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're Grounded!!!
Parenting is one of the greatest joys and greatest challenges all at the same time. Overwhelming joy and deepest grief. This month, we’re looking at something we do daily as a part of parenting…DISCIPLINE.
Written by Sarah McGuire
Let’s talk parenting!
Parenting is one of the greatest joys and greatest challenges all at the same time. Overwhelming joy and deepest grief. This month, we’re looking at something we do daily as a part of parenting…DISCIPLINE.
We want so much for our kids. We love them with everything we are and have, and yet so often our relationships with them are characterized by frustration, tension, and conflict. When we correct them, what we really want to see is heart change, but most often after a discipline issue parent’s feel they’ve missed the mark or that their kid just hard-hearted and resistant.
But all is NOT lost – there is hope!
In the Hope Anew Online Community during the month of April the theme has been parenting. There are 4 short videos posted there on the subject:
Video 1 – I share some philosophies and approaches Jonathan and I have come to embrace in our parenting after some trial and error and weeding through MANY parenting books & approaches and even counseling courses. I share some reviews of and links to those in the next blog post.
I also share some things we do NOT do or STOPPED doing (because they were counterproductive, but the most well-known Chrisitan parenting advice says that’s exactly how to parent). And, I share some things we DO do and have found to be beneficial that’s rarely taught.
Videos 2 & 3 – We take the last part of video 1 (what TO do) to the next level as we look at the book Discipline That Connects with Your Child’s Heart by Jim & Lynne Jackson
Video 4 – Is about the power of vision-casting and blessing in our kids’ lives.
If you are finding that parenting is an area that leaves you hopeless, exasperated, or isn’t going how you hoped it would (beyond your child having extra challenges), hop on over to the Online Community and take a look at the videos and see what your next step could be in disciplining and discipling your kiddos!
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!
Due to COVID-19, Hope Anew is waiving all membership fees for the community!
The Polar Vortex and Gratitude: An Unlikely Combination
The polar vortex and gratitude. I never thought of pairing the two until the great polar vortex of January 2019. Even though I have lived through plenty of what we used to call "cold snaps"…written by Jolene Philo
The polar vortex and gratitude. I never thought of pairing the two until the great polar vortex of January 2019. Even though I have lived through plenty of what we used to call "cold snaps".
• I was 9 in 1965, the year that held the record low temperature for January 30 until 2019.
• I was 25 and 5 months pregnant in 1982 when the mercury dipped to -45° when we were living in northwest South Dakota.
• I was 33 in 1989 when school was called off for 2 days before Christmas break, which meant my third grade students had their anti-climactic Christmas party when school resumed in January.
The difference between my response to previous cold snaps and the 2019 polar vortex go far beyond a name change. My response to the 1965 cold snap was delight when Mom said she would drive me to school. In 1982, my husband and I piled into our friends' car and traveled 90 miles to go out to eat, though the thermometer was -20° at its warmest.
In 1989 our son born with medical special needs was 7, and his baby sister was a few months old. By then I was haunted by what our son's early years had revealed. His multiple surgeries, frequent invasive procedures, and nearly constant infections and illnesses showed that bad things happen even when you follow the rules and choose wisely. Therefore, my wisest course of action was to control the situation tightly, to protect my children, and keep everyone inside until the cold snap ended, or we ran out of Kraft Macaroni and Cheese.
By 2019 our son was on his own and doing well. We had begun an intergenerational living arrangement with our daughter, her husband, and their children, ages 3 and 1. We had gone through hard times and good ones. We had seen God faithfully provide doctors and therapists for our son. We had seen Him provide for every hospital and medical bill. We had seen Him provide when we changed careers. We had seen Him provide the houses we needed and could afford. We had seen how much better His plans were than ours.
So when the temperature plunged in January 2019, when condensation streamed down the windows, dripped from the ceilings, and pooled on the floors, when the dryer quit working and the service people weren't making house calls, when the editor of my latest book for special needs families sent revisions with a short deadline, I didn't respond with my pre-motherhood abandon or with my post-motherhood iron grip of control.
Instead, I responded to the polar vortex with gratitude born of more than six decades of experiencing God's faithfulness. This time, I sat back to watch the latest installment of God at work in our lives. He didn't disappoint.
• My husband and I saw God expose the condensation issues during preparations for an upcoming house remodel. Now we could talk to the contractor about what to do.
• When the repairman said the dryer was toast, we were able to purchase one, used for 3 days and returned because the previous owner didn't like the color, for 1/3 the original price, and with the original warranty.
• I asked friends to pray for me, specifically for wisdom and peace, while working on the requested revisions. The cold weather kept me home and focused, and the revisions went faster and more smoothly than expected.
For me, the polar vortex and gratitude are closely linked, as is my gratitude for the privilege of raising a child with special needs. You may find that statement ludicrous if you are new to the role of parenting a child with special needs.
Thirty-six years into the job, I have come to trust God's plan for my life and the lives of our children. I have learned that the best gifts are not always easy, but they are always good. This is a promise I can trust and so can you.
This is a hope upon which we can stand together. It's a truth to remember when the next cold snap rolls in and God shows you how the unlikely combination of polar vortex and gratitude, as well as special needs parenting and gratitude, really do belong in the same sentence.
Written by Jolene Philo
