Hand to Hold's Official Blog: Written by Parents for Parents

Coping with Grief as a Special Needs Parent

©CanStockPhotoInc./HASLOO

©CanStockPhotoInc./HASLOO

Coping with, and overcoming grief, as a special needs parent, is an ongoing process. We ride a continuous rollercoaster of triumphs and tribulations where mere minutes can mean the difference between happiness and heartache. At times, you can become so consumed with sadness that you feel as if you’re drowning and can barely keep your head above water. We all know the main avenues we are directed towards to help navigate us through the 7 Stages of Grief. Things such as psychotherapy, support groups, medications, and yoga; but I want to talk about the things you can add to your everyday routine that can help take back your life and help guide you through the grief that often comes with being a special needs parent.

Educate Yourself: Researching online or putting your nose in a book is one of the quickest ways to help ease the anxiety and grief that comes with being a special needs parent. There is something empowering and therapeutic when you learn as much as you can about the obstacles that are standing in your way. No one expects you to have all of the answers. Keep in mind that everyone’s answers will be uniquely tailored for their circumstances. We piece together information from various sources and do the best we can to make informative decisions.

“Knowledge is power. Information is liberating. Education is the premise of progress, in every society, in every family.” – Kofi Annan

Educate Others: Teach your family and friends about what’s going on and what they can do to help. I’ve made the mistake in the past of trying to do everything myself because it seemed easier at the time to just get it done instead of teaching my husband how to handle it. As time went by, I became resentful of my husband because he was uncomfortable and had no clue how to respond to tough situations with our son. If you take the time to educate others, you’ll find that others are able to empathize with you and feel more secure about lending a helping hand. Remember, it’s ok to ask for help. You need time to breathe and compose yourself.

Get Up – Get Dressed – Get Out: In a perfect world I would say, “make sure you shower every morning and start with a clean slate,” but who am I kidding, right? As a special needs parent I find myself lucky if I can even remember the last time I brushed my teeth, nevertheless how often I’m able to take a long, hot shower. As a rule of thumb, I try to make sure that I’m out of bed by a certain time each morning and dressed as if I were going to run into an old friend. Not perfect – just presentable. I find that if I’m up and dressed, there’s about a 75% chance I’ll actually step foot outside my door. Too often I would get the urge to run an errand or take my son outside but just didn’t have the extra commitment factor to actually put clothes on. Get out of the house – even if it’s just to sit on the stoop outside and take a deep breath.

cristal sonBreathe: Give yourself time to take a break. It took me a long time to accept that IT’S OK NOT TO BE OK. I always felt as if I needed to be the strong one. My son’s issues can change dramatically from day to day and my husband often travels for work. This puts my husband at a disadvantage, not knowing what to say or do when our son is having a really hard time. I often felt that I needed to be that solid foundation and believed that if I faltered, our world would come crumbling down. What I didn’t realize was that my actions were affecting our entire family dynamic. You gain an incredible sense of empowerment when you are finally able to step back, fully accept and understand that it’s ok to “tap out”, walk away, and wave your fist at the universe while you regroup.

Remember the Little Things: Little things matter and can be the biggest influence on your healing. Creature comforts that are just for you include the following:

  • Read an inspirational quote a day

    ©CanStockPhotoInc./iqoncept

    ©CanStockPhotoInc./iqoncept

  • Light a candle
  • Put on your favorite music
  • Dance
  • Use essential oils in a diffuser
  • Chew your favorite gum
  • Journal – write down how your feeling
  • Feel the sun on your face
  • Cuddle with your pet
  • Color – it’s amazing how therapeutic coloring with crayons can be
  • Lay on your back in the middle of the floor and see what happens

Remember to never give up hope. Never let anyone tell you that there are times when hoping can be bad, wrong, or inappropriate. Hope leads to action, and without action, we will never have the ability to open our minds to the incredible future that is in store for our remarkable children and help us heal.

Cristal Grogan About Cristal Grogan

Cristal Grogan (MD) is the mother of Seth, who was born at 29 weeks weighing 2lbs 4oz due to severe preeclampsia, HELLP, and IUGR. As a military wife, Cristal and her husband were living in southern Spain at the time. Seth’s NICU stay was complicated as he battled NEC, ROP, IVH, PDA, Sepsis and PVL, but Seth defied all odds. He is now a happy and healthy 3 year old avid reader living with Autism and SPD. After navigating through the NICU life in a foreign country, amidst a language barrier and lacking proper resources or support system, Cristal swore to become involved in the preemie community to make sure no other parent was left in the same desperate situation. Currently, she is the Administrative Assistant for Preemie Parent Alliance and social media volunteer for It’s a Preemie Thing. In her personal blog, she describes the daily life of a military family with a special needs child.

Comments

  1. This is such an important topic and I’m so glad you addressed it. Grief does not only apply to parents whose babies don’t survive. There is a very real and tangible grief that comes with the loss of anything – the perfect pregnancy, the ideal birth, going home with baby, the loss of celebrations, and the loss of the type of parent you would be to the type of child you had dreamt of. All very real and so very important to acknowledge. Thank you for a wonderful post.

Speak Your Mind

*