Why Am I Struggling So Much?

Do you ever wake up and not want to get up? Do you ever lose your motivation and drive? Stay awake at night too late just vegging or zoning out? Snap at your spouse and everyone around you? We go about our day to day lives, caring for our kids, spouses, and selves handling what needs to be handled, doing the tasks that need to be done, mediating the scuffles that arise, and a host of other things. You used to have motivation to do all the things, to tackle the challenges, to meet the needs, to love others well in a peaceful way. Now you feel sad, angry, grumpy, tense, or unmotivated.

So, what is going on? What has changed? Why are you struggling?

 As a parent of a child with special needs and disabilities, you aren’t alone. The more parents I talk with the more I see this as a common, almost universal struggle. It may not be all the time, and it can be more pronounced in certain seasons of life and circumstances. And, I’m seeing it strongly right now in the general population with the Coronavirus stay-at-home order. Why?

One of the main reasons is grief. Grief is not only experienced when there is death, but with any type of momentous loss. This includes the loss of what was expected or anticipated in the future but will now not happen. This might be the hopes and dreams you had for your child and for how your family would look, activities they would do together, social interaction with family friends. But, the child will never accomplish those things, the family can’t do those activities, and the friends deserted you when you had a child with special needs. It might be a vacation you had planned or a graduation ceremony and senior year events with friends that won’t take place. It could be a lost job or every bit of “extra” income going to pay for therapies and treatment instead of a night at the movies or a vacation.

Grief has five stages: denial, anger, bargaining, depression, and acceptance.

These stages aren’t linear, so just because you dealt with anger yesterday that doesn’t mean you’re done with it for good. No, you can go through the stages repeatedly and can bounce back and forth between different stages. You may stay in one stage for a while or you may experience all of them in one day. A participant in one of our group Hope & Healing Workshops once commented that they felt like they were in the tumble dry cycle of a clothes dryer and that can sum it up perfectly.

 What do you do about it?

1. Acknowledge it. Name it. Simply identifying it and naming it can help so much.

2. Express it. That will look differently for different people and personality types. It may be writing in a journal, talking with a friend, having a good cry, writing a lament, expressing it to God, etc.

3. Shelve it. While this isn’t a good long-term plan, it is sometimes necessary in the short-term. Sometimes in order to deal with what needs to be done right now in this moment, hour or day, we can’t take the time to deal with it because it would stop us from handling the current situation. But, still name it, “Oh, that’s grief. I’ll need to deal with and express this later for my emotional, mental, physical, and spiritual health, but I need to set it aside for now so that I can complete _____ task.”

4. Express it some more. Grief comes in waves and just because you acknowledged it and expressed it once doesn’t mean the process of grieving is complete. It will usually take repeated expressions of it before you are ready to move on, especially with more significant losses.

5. Don’t let yourself get stuck there. If you only ever focus on the loss, you won’t be able to move into the future and build new dreams. This doesn’t mean you deny the reality of what you lost, but it does mean you say something like, “Yes, I lost ____ and that is significant, hurts terribly, and I will continue to grieve it sometimes. Yet, I have ______ and while it will be different than what I wanted, expected, and hoped for, life can still be beautiful, good, and purposeful.”

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, all membership fees to the Hope Anew Online Community have been waived!

Unique Challenges Of Marriage: My Spouse Is Overreacting

“My wife thinks our son has autism.” It was morning and I was sitting in the office of a colleague of mine. He had just asked how I was doing and that was my reply. There was a disassociation there, as I didn’t want to believe it yet.

It took me longer to accept the diagnosis than what it did for Sarah. For Sarah, the diagnosis was a relief because it gave direction and helped her better understand what was going on. She had been caring for our son all day and all night, day in and day out. She was searching for answers when no one else could give us any.

I was away at work all day and not home until late evening. I didn’t see the day in and day out as much. For me, the diagnosis communicated a weight, a finality, the beginning of the end of a dream. I didn’t want the diagnosis to be true so I denied it.

You may find yourself identifying with where I was. You may be smack dab in the middle of denial and think that your spouse is way out in left field with whatever diagnosis your child is facing. You may think your spouse is overreacting to whatever is going on. If you are in this camp, it can be easy to become irritable whenever the diagnosis or other health struggles are mentioned. It can be easy to be upset and even grow bitter at your spouse.

If this is where you find yourself and some of the above thoughts resonate with you, remember it is time to love well. Notice, I didn’t say to just humor your spouse but love them. Here are some ways that you can do that:

• Engage with them. Don’t just burry yourself in your work to avoid the problem. They are likely lonely and need you.
•  Listen to them. Set down the phone. Turn off the TV. Make eye contact and really listen.
• When they bring research and information to you, study it.
• Whenever you have a chance, go with them to the doctor appointments. Don’t be afraid to ask the doctor questions.
• Trust them. I don’t know you but more than likely, if you are in this spot, your spouse is the primary caregiver and is with the child a greater portion of the day. Trust them and trust their instincts.

After a time, I accepted what was going on and became that much more engaged. While I went on to go through the other aspects of chronic grief, I came to a point of being able to dream a different dream for our son and Sarah and I became a stronger team.

How you demonstrate love to your spouse during this time is so crucial. This time can have the effect of tearing apart a marriage or strengthening it. How you show love to each other will make all the difference.

How can you best show love to your spouse right now?

P.S. If you feel like your spouse is in denial, don’t just print this article off and leave it waiting for them somewhere! That probably won’t be received the most favorably.

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.