309 How to Find Hope and Flourish When Parenting a Special Needs Child

Episode Summary:

Mothers of children with special needs experience a wide range of emotions: fear, disappointment, guilt, grief, despair. They have a yearning for relief but often feel isolated and inadequate as they look at the parenting experience of others. As you pour your energy and resources into raising a special needs child, it’s easy to struggle with feelings of isolation, competition, and overwhelm.

For the special needs mom who yearns for community and support on what can be a lonely road, my guest, Carrie Holt, wants to remind you that you are not alone, your best IS good enough, and even on the hard days, there are blessings to be had. In honor of Developmental Disabilities Awareness Month, we’re sharing how to find hope and flourish when parenting a special needs child.

Quotables from the episode:

• I have seen how families lose hope, feel strung out, and all alone living this life of being in and out of the hospital. From the time my son was around 20 months of age, I began volunteering at our local children’s hospital and have been passionate about encouraging others ever since.
• I was joyfully expecting our third child when at a 20 week ultrasound, our doctor told us something was wrong with the baby. We learned he had Myelomeningocele (Spina Bifida) and Hydrocephalus and would require two life-saving surgeries the first day of his life, with one following a few days later. I read a lot about his condition, grieved, and then planned – trying to control everything.
• It wasn’t until the last few years, that I have truly grieved that, and have been learning to live in the tension of lament. My son ended up being admitted for 64 days, 30 of those in the PICU. He came home with a trach, ventilator, and g-tube with 16 hours a day/7 days a week of home nursing care. He’s been in and out of the hospital repeatedly and to date has had 64 surgeries.
• The life of parenting a special needs child is continual, so we are all learning to live in the tension of our kids not being healed and how God is with us in all of this. I’m learning that it’s okay to feel disappointed, to lament that to God, and grieve the hard moments of realizing that my son isn’t going to be like other kids. I’m also trying to help him navigate life’s hard questions: “Why did God allow this? Why didn’t he heal me?” His complex emotions, doubts, and anger over being in a wheelchair has been really hard for us.
• Do not be afraid of grief. Sometimes we feel like it’s going to drown us, but it’s so important to take our messy emotions to God.
• It’s okay to take our messy emotions to God – even anger, doubt, and fear, but it’s actually essential to our relationship with God and how He meets us there. Emotions aren’t something we get over, they continually come up again and again, but we’ve learned some strategies to deal with them. Gratefulness, getting quiet, and lament are just a few.
• I think for me personally, it is learning to take this one day at a time, crying out in the pain when it’s there, and then also remembering that God is in control. It’s also just looking for the little gifts of hope and joy that he gives us on a daily basis.
• Probably the biggest thing has just been his presence and knowing him in a way that I had not known him if I wasn’t in this.
• As difficult as pain and suffering is, God has showed me his character and his presence and sometimes it's just that perspective shift of Lord show me you, instead of my eyes being on my pain and my suffering, show me how you've prepared me for this, show me your character, show me your glory, show me your comfort.
• Jesus wants to be present in your pain.

Scripture References:

• Psalm 40:1-3 ESV I waited patiently for the LORD; he inclined to me and heard my cry. He drew me up from the pit of destruction, out of the miry bog, and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. Many will see and fear, and put their trust in the LORD.
• Lamentations 3:21-26, ESV But this I call to mind, and therefore I have hope: The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The LORD is my portion,” says my soul, “therefore I will hope in him.” The LORD is good to those who wait for him, to the soul who seeks him. It is good that one should wait quietly for the salvation of the LORD.

Recommended Resources:

• The Other Side of Special, Navigating the Messy,