To the New Parents of a Special Needs Baby

Like attracts like.

When you love someone who’s in the midst of a major trial, you try to connect them to others who’ve been through similar hard times.

Since our daughter Caroline was born with a chromosomal disorder six and a half years ago, friends and family have reached out to us when they know new parents of a special needs child.

Caroline in the NICU. Yes, she was born with a full head of hair!

Perhaps it’s Down Syndrome or Trisomy 18 or Cystic Fibrosis. Maybe the baby is hospitalized, and mom and dad have emotional whiplash from the diagnosis roller coaster. Or maybe the parents are just getting baby home and dealing with an exhausting present and an uncertain future.

Relatives ask us if they can give our contact information to the new parents; they’re hoping mom and dad will reach out to us for support and empathy. When I hear about them, my heart gets soft. I want to be next to that mother, hug her, and listen as she shares what she’s going through. I want to tell her so many things.

I also know that many people offered that to us when we first had Caroline, but most of the time we didn’t have the emotional energy to reach out.

However, each day when visiting hours ended and we collapsed onto the couch at home, we did read sites written by the parents of kids with special needs. That was the way we found connection and empathy.

With that in mind, here is my message to the parents of a new special soul:

  • What you’re being asked to cope with is so hard. Remind yourself that when you feel overwhelmed. This is HARD stuff. You can’t deal with it on your own.
  • Like your child’s medical team, you need a support team. Gather family members, friends, and ward members who you know you can rely on unequivocally.
  • Look for teammates who are patient, loving, sensitive and courageous. Look for people who will listen.
  • Talk about what you’re feeling with them; it really does help to talk it through. 
  • Try to ignore some of the thoughtless stuff people say. Most people mean well. Thank them for their concern and move on.
  • People want to help but they may not know what you need. So…
    • Give someone your grocery list and money and let them handle your shopping that week.
    • Ask for visitors in the hospital room to help pass the time.
    • Let people bring you meals and clean your house.
    • Ask a trusted person to talk with your insurance company about any questions or problems you have.
  • It’s OK to ask “Why?” 
  • Some friends may distance themselves from you. Try not to take it personally and let them go.
  • You will form precious new friendships that you never expected to find.
  • Don’t worry if you can’t initially absorb all the information thrown at you about special programs, support groups, financial help, etc; when you need it, you will find it.
  • Keep a small and simple journal. You’ll want to have a record to look back and see the Lord’s hand guiding you.
  • In that journal, write down every move the medical team makes. This will help you keep track of your child’s health and help you feel useful during the long NICU vigils. 
  • One day at a time. One day at a time. One day at a time.
  • Cling to your spouse; he or she is the only person on earth who knows exactly what you’re going through.
  • With the Savior’s help, you are stronger than you think you are. Seriously.
  • Pray. Read the scriptures. Especially when you feel like you’ve been forsaken and left alone by God. He is there. You will feel His love again.

There will always be an ache in your heart – grief for the loss of a dream, grief that your precious child has to have such a frail body.

But, the sadness you feel will dissipate, and love and gratitude will be left in its place. You will feel happiness again. You will feel normal again. Let the Lord take care of the future, and you will find He will take care of you. He will help you cope.

Caroline at almost 5 years old

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Having worked in politics and health care, Erika’s unexpected primary love is raising her two girls. She’s originally from Southern CA and craves Chicago-style pizza fortnightly. With her husband, she pursues heavenly living in Sin City and blogs about it at www.lovefromlv.com.