Stages In The Parenting Journey Part 3

That last two weeks I have shared about how our current situation with selling our house due to health reasons and going on an epic family adventure bears similarity to many of our journeys as parents of children impacted by special needs. If you missed those, you can catch last week’s article here.

Stage 3 – Movement: First Unsteady Steps Forward

We were able to keep many kitchen tools and most clothing that was a single layer. Nothing upholstered or thick, no couch, comfy chairs, shoes, coats, papers, books, pictures, nothing made of particle board, etc. Anything that we were able to keep had to have every single surface thoroughly washed and wiped down with the mold cleaning solution before packing it. Our hands had to touch and sort every single item. Many dear, treasured, and sentimental things were simply thrown into a garbage bag or trailer for the dump…my wedding dress, photos of the boys’ baby pictures, our engagement night pictures by the pond out front that would soon no longer be ours, art the boys had drawn for me, Christmas stockings made by grandmothers and great aunts who are no longer alive, the china cabinet we bought on our honeymoon.

The items seemed endless and the process took months. Items we had saved money for months or years to be able to buy and finally were able to add them to our house to make it a comfortable, welcoming home became trash. Some items we sold in a moving sale (before the pandemic) for pennies of what they were worth. Two decades of building a home all gone and no insurance money to replace things. It was all consuming, that’s nearly all I did those 3+ months. Every. Day. Sort, trash, wash, cry, repeat. Just surviving through hurt, grief, and managing the day-to-day task of getting through the crisis.

With special needs, you get to the point that either your time limit has expired, and action must be taken immediately, or your research has progressed enough to make a first decision. In an emergency situation, your research may be listening to and solely relying on the information from a single doctor. Or, you may have time to dig deeper, consult with specialists, talk to friends who have been through it, and evaluate your options. But at some point, you have to make a decision and embark on the first interventions – a surgery, special school, therapies, special diet, or some other program. This may last for a week or it may last a year or more. It may work and you can keep moving forward to the next step or it may not, and you have to do more research and try plan B. Your stomach is likely tied in knots and your thoughts filled with hope and fears as you embark on this first step.

Your new reality starts to settle in as to what this new life will look like – the agony of surgery and recovery, follow up surgeries, speech therapy, trach tube, ABA therapy, doctor appointments galore, paperwork, adjusting your life and schedule around the needs of your child with additional needs, and changing it again at the last minute.

All future plans are written in pencil. It all feels foreign, unknown, and overwhelming. 

At this point in Stages 1-3 in the journey, it’s not uncommon to start asking some soul questions like, “Why? Why me? Why us? Why my child? God, why would you do this? Allow this? Why didn’t you protect us from this? God, I thought I was a good person, serving you, doing life the best I could for you, why did you punish me, my child?”

If you find yourself or your spouse asking these questions, it doesn’t mean that you are a bad person or a bad Christian. It is part of the grieving process. It is part of the healing process.

To be continued…

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Unique Challenges of Marriage: My Spouse Is In Denial

We were sitting down in a small diner with some friends. They were sharing with us about their journey in special needs and how they were doing. As they were sharing, the husband began talking about the future and how he dreaded how quickly their daughter was approaching legal driving age. His wife just stopped and looked at him and replied that their daughter would never be able to drive due to the how her special needs impacted her. Her husband listened, but you could see he was not ready to accept it.

Denial, anger, bargaining, hopelessness, acceptance are the 5 most associated aspects of grief. We are all familiar with them but that doesn’t make it easy to experience. It is easy to assume that you will be in the same spot as your spouse but that isn’t always true.

Initially, it can be so hard being in different places in the grieving process, especially when one spouse is stuck in denial. The one person who has been there with you through the entire journey is not in the same spot and may even be at odds with you, putting up barriers to different treatments or therapies. This can lead to increased feelings of isolation and loneliness. It can create a fear for your marriage as you feel like you are in a spot of having to choose between the health of your child and your spouse.

What can you do?

• Love and respect your spouse well. Recognize that they are likely going through their own internal battle. Listen to them and check in with where they are at emotionally. Keep bringing information to them. Not in a nagging way but in a factual way. Share what the doctors are saying and what the therapists are saying. Be real with them about what your day looks like and don’t gloss over what the struggles were (don’t exaggerate them either).
• Connect with others who get it and have been there. I don’t mean a group that just gripes about how un-understanding their spouses are but a group that will encourage each other. This might be a support group, a Facebook group or some other online group.

It is a hard and lonely spot to be in. Eventually, the denial will pass and you both will find yourself in a much better place.  The different rates at which you experience the various aspects of chronic grief will become a strength as it will allow you to better support and encourage each other.

Are you the parent of a child with additional needs? What aspects of chronic grief do you relate with most right now? Denial, Anger, Bargaining, Hopelessness, or Acceptance

If married, where would you say your spouse is with these different aspects of chronic grief?

Would your spouse say that you are living in denial regarding your child’s needs? Stay tuned for part two: “Unique Challenges in Marriage: My Spouse is Overreacting” next week.