Take Heart

The Importance of Grieving in Special Needs Motherhood

• Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 36

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Today’s episode is a gentle reminder that grieving our circumstances doesn’t mean we don’t accept and love our current life as special needs moms. God will not leave you in the broken places of your grief. You can run to Him with your sorrow, letting Him write new dreams for your life. 

April 20, 2021

Timestamps & Key Topics:

  • 0:19-     Intro
  • 1:01-     Grieving
  • 3:29-     Fear Disguised
  • 5:24-     Grief Allowed
  • 7:02-     Desolate Places
  • 9:04-     Blessing
  • 10:15-   Outro

Episode Links & Resources

  • A Grief Observed by C.S. Lewis
  • Scripture Mentioned: Genesis 6:6, Psalm 34:18, John 11:35, Matthew 14:13, Psalm 119:28,
  • Every Moment Holy “Death of a Dream” (Pg. 234-235).

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(0:19) Welcome to Take Heart. Our goal is to give you hope and offer insight and encouragement, so you can flourish in your journey as a special needs mom. Each week, Amy, Carrie and Sara will explore a theme, share an inspiring story, a practical tip and an encouraging blessing using our combined experience of over 30 years of parenting children with special needs.

(1:01) Hi, it's Sara this week. Thanks for joining me today. This month, we are talking about grief. Before my son's diagnosis, I'd always associated grief with death. My son has a complex medical issue, and his diagnosis is degenerative and terminal. Since he was alive, when others had already succumbed to the disease, I didn't feel like I had the right to grieve, at least yet. Death doesn't have sole rights over grief. Grief, more times than not is about the end or the change in something familiar, desired or even expected. We didn't choose a child with complex medical and physical issues. When we realized our little family's dreams had abruptly changed, we experienced many emotions, most of which we didn't even know how to name. I had no idea at the time, but the emotion I was feeling was grief. Obviously, we were grieving the apparent loss of a child that would come way too soon. We were also grieving dreams we had for him, and for his brother, for us, for our family. Even more recently, I realized that I am grieving retirement. I was avoiding the discussion of retirement with my husband when up to that point, it was something we reviewed often. I realized I was avoiding it because I was planning for a time when our son TJ wasn't going to be with us. At least in my head that's what I associated retirement with. I didn't want to talk about retirement because I didn't want to talk and plan for a time where we would be able to experience our golden years, knowing our child wasn't going to be with us. Those are brutally real confusions, fears, and even griefs. Even though no special needs diagnoses are the same, one constant remains: raising a special needs child is a continuous lesson in grieving. Maybe you grieved when you first received the diagnosis. Possibly you were grieving before that, or after that. Maybe you continue to grieve when your child doesn't reach milestones as their peers do. How often do we hear, "not thriving" said from a doctor? Those are real moments to grieve. Then if grieving isn't enough, maybe you feel guilt about the grief. Let me start by saying this. You are not a bad mom if you grieve the dreams you had for your child or your family. Grieving those dreams does not mean you're not accepting and loving the life you have now. 

(3:29) I think grief for special needs moms is often fear disguised. I have a love/hate relationship with C.S. Lewis's book A Grief Observed. In that book he says, “No one ever told me that grief felt so much like fear.” That is so true for me and my journey as a special needs mom. I don't know about you, but I fear so many things about being a special needs mom and that turns into grief because I know, I can't do anything to reverse my son's diagnosis. I grieve and fear so much about what he has to endure, what he will endure, and I fear that I will have to sit back and watch helplessly. I fear the next stage of his disease and what that means for him and of our family. I fear not being prepared or qualified for what he will need next. I grieve that my mom duties include preparing for his deterioration or his death. But most of all, I fear the day I will lose him. I used to berate myself for anticipating the grief. There are times when I felt guilty, and I still feel guilty for grieving my sons and my family circumstances. I think we have so much and others have so little. What do I have to be sad about? I thought the anticipatory grief was me being negative, you know the glass half empty. I know now that I can't muscle my way through grief. I can't suck it up, or bear it, or fake it until you make it, or whatever other phrases are out there. There's only one way to the other side of grief and that is to go through it. You can't sidestep it, and you can't jump over it, and you can't beat it to a pulp unfortunately. Once you do make it through it, you aren't removed from it. Anniversaries, circumstances or certain situations will sometimes trigger that grief. 

(5:24) Not only are we allowed to grieve, but God expects it. He created us to grieve. He created us in His image, because he grieved. Genesis 6:6 says, “that God was grieved, and his heart was filled with pain.” God also grieves with us. Psalm 34:18 says, “The Lord is close to the brokenhearted.” In John 11:35, it says that Jesus wept over the death of his friend, Lazarus. That was Jesus. He knew he could raise him from the dead, and he still grieved because he felt that pain of his friends. Matthew 14:13 talks about Jesus's reaction to when John the Baptist was beheaded. When Jesus heard that John the Baptist was murdered, he left in a boat to a remote place so he could be alone. He did not suck it up, or fake it until you made it; he grieved. We also become closest to God in the midst of our suffering and grief. When we have nothing else to turn to, falling on our knees and asking God to show us the way is exactly how we properly cope with that grief. Being completely honest, even almost a decade after my son's diagnosis, the fear and grief threatens to overwhelm me at times. I don't see that ever stopping, unfortunately. Some days it is all I can do not to just stay in the closet, in the fetal position, crying my eyes out. The pain is almost tangible. It hurts, and it steals my very breath. 

(7:02) Here's the thing, though, when I get to that desolate place, I know God is with me, and he will not leave me in those broken places. Psalm 119:28 says, “My soul is weary with sorrow, strengthen me according to your word.” I love that scripture. When it seems like there's nowhere for me to turn to ease that grief and fear, I know I can find strength in His Word. I spend time in Scripture and I spend time with God. I let him speak to me in ways that only he can comfort me. While I'm being honest, I'm still learning how to do that. Turning to God, relying on his word; it's a process. Kind of like grief, there is no end to grief. There is no finish line that once you cross it, you get to relax. There's no end to our growing relationship with God either, thank goodness. There is no finish line. We get to keep growing in our relationship with our Savior, working through the process of grief and the process of growing closer to God. We know that grief won't overtake us. We learn every day how to put one foot in front of the other. We learn how to focus on the moments we have now. I have also found that one of the most amazing things about turning to God and your grave is that he will answer prayers you didn't even know you had. He will comfort you in ways you didn't even know you needed comforting, and He will give you hope when you thought all hope was lost. He will carry the burden when it just gets too heavy to carry on your own. Even though it's okay to grieve. It's also okay to let God transform that grief into hope. It's okay to lean into his dreams for you and trust in His guidance. No, you won't always trust that immediately, nor will you always like the plan initially. It all might not even make sense on this side of heaven. I do know if you turn to God and truly spend time with him and his word, God's love and peace will guide you. It will comfort you. It will always be with you. 

(9:04) I want to leave you with a passage from Every Moment Holy. 
“Let me listen to its holy whisper,
that I might release at last these lesser dreams.
That I might embrace the better dreams you 
dream for me, and for your people,
and for your kingdom, and for your creation. 
Let me join myself to these, investing all hope 
in the one hope that will never come undone 
or betray those who placed their trust in it. 
Teach me to hope, O Lord, 
always and only in you.
You are the King of my collapse. 
You answer not what I demand, 
but what I do not even know to ask. 
Now take this dream, this husk, 
this chaff of my desire, and give it back 
reformed and remade according to 
your better vision, 
or do not give it back at all. 
Here in the ruins of my wrecked 
expectation, let me make this best confession:
Not my dreams, O Lord, 
not my dreams, 
but yours, be done.
Amen.”

(10:15) Carrie has a free exercise on her website at www.carriemholt.com, and you'll find the link to that in the show notes. This free exercise it's called Eight Practices for Processing Grief. It is amazing. You will definitely want to check that out. Thank you for joining us this week on Take Heart. If you are loving our podcast, would you do us a favor and leave a review on whatever platform you're using to listen to our podcast? You can follow us on Instagram or Facebook @takeheartspecialmoms. If you have any questions or comments or would like to share your story with us, follow the links in our show notes. We love hearing from our listeners. Listen in next Tuesday, as all three of us come together to share our thoughts on grief.