Click here for a FREE download on tips to finding peace, hope & gratefulness in the hard places of being a special needs mom.

How is your week going? How are you doing with living in the here and now and being patient with living in the tension of life not being what you expected?

Honestly it’s been a bit of a rough week with the Holt family. No one ever told me that being a special needs mom meant walking through their grief as well as my own. As my son has aged, he has become increasingly more aware of his differences, limitations, and obstacles. No one told me that I would sit with my son in the ashes of tears, anger, sorrow, and hard questions such as:

Why doesn’t God do miracles now like he did in the Bible?
Why won’t God heal me so I can walk?
Will these new braces make me walk? (This new medical device is for positioning only, he won’t ever walk)

Maybe you can’t relate because your child is non-speaking, but that doesn’t mean they don’t still feel loss, frustration, and grief; the expression of such might be shown through behavior rather than the verbal expression of questions.

This week wasn’t so much about all of the medical appointments, but learning to be present for my son emotionally and mentally, helping him navigate difficult questions, big feelings, and once again accepting his limitations. I’m learning the delicate balance of sitting with my grieving son, being present, but also sharing truth, and gentle reminders that walking doesn’t define his worth. God knows and understands his pain.

No one ever told us this would happen, but someone showed us how.

It was Jesus.

I love watching his tenderness with those he healed, how he spoke truth to Peter, and his love for Mary, Martha and Lazarus. He wept. He grieved. He mourned. His heart broke. Aren’t you glad that we have that ever constant friend who is with us and feels everything we feel? He knows, cares, and is…now…and always.

“Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. But for me it is good to be near God; I have made the Lord God my refuge, that I may tell of all your works.” (Psalm 73:25-26, 28)

This month on the podcast we’re discussing the support we need, and our greatest strength comes from drawing near to God. How many times do you feel like your courage, heart, body, and soul are failing? Yet, God reminds us that He is our strength, He is our portion – FOREVER. He can handle our grief and the grief of our children.

Do you have friends or family members that don’t really know how to help or support you and your family? This month’s podcast episodes surrounding this topic may help, and it may be better received coming from someone outside your family. Let us speak on your behalf!

If you have any questions or want to continue this conversation, feel free to reply to this blog in the comments.

Authored By:

Carrie M. Holt

Caring for the Caregiver

Today marks day 4 of no caregiving duties. My son was chosen as a 2023 delegate for the Missouri Youth Leadership Forum (MYLF) through the MO Governor's Council on Disability. ⁣We dropped him off at the University of Missouri-Columbia to stay on campus for 5 days. It...

Run Your Own Race

This week, Amy interviewed Jennifer Dukes Lee on the podcast. If you haven’t listened to it - put it in your queue - it’s really good. Jennifer tells her story of how she has often measured success by the boxes that are checked, the things accomplished - move fast and...

What about my other kids? What I have learned about mom guilt.

Recently I had a conversation with my oldest son, who is 30. We talked about the things I would do differently as a parent. He said he thought we did a great job as parents (Yes! What we all want to hear!), but there was one thing he wished I hadn’t done. My heart...

Transitions In Caregiver Life

I have been doing fantastic work lately on getting my priorities straight. When I say "fantastic," I mean I hit a brick wall and had no choice but to decide what had to be done and what I needed to let go of immediately. Simply put, I have been overwhelmed. I won't go...

Running Triage: A Note From Carrie

Happy summer. Although, if you live in the Midwest, we’ve almost been running our heat in the last few weeks. It’s been so cold. My son has spent a lot of time in the emergency room, and as a result of his tracheostomy, we’ve often bypassed (much to the chagrin of...

Tips for Summer Break 

It is finally summer! Does that fill you with joy, dread, or a little bit of both? When my kids were younger, I would approach the coming summer break with apprehension. When I heard other moms looking forward to the lazy summer days, fun activities, family vacations,...

Terrifying Transitions for Special Needs Families

Hello friend!  Oh, summer - what mixed feelings I have for you. Summer tends to be a time most get to take a deep breath, plan vacations, visit relatives, work on tans, participate in traveling sports teams, open up lake houses, take out their boats, or plan camping...

Ending Well As a Mom 

It's May, a busy month for moms and often the celebration of many endings: the ending of a school year, graduations, recitals, field trips, and picnics. I recently watched a hilarious video of the Holderness family singing a parody song about May, entitled Maycember....

Savor the Small Moments

This past Saturday, I stood in the cool green grass and took pictures of my daughter and her prom date. She looked beautiful. It was an ordinary moment in a not-so-ordinary life. It was a mother-daughter moment that I do not get very often, a moment when I could see...

The Ripple Impact of Advocacy

Well, this week had the makings of a craptastic week, but a group of 16-18 year old high school boys saved it. Seriously. No joke. I had this master plan to take some time off for myself (insert hysterical laugh). My son's semi-annual Duchenne Muscular Dystrophy...