Accepting A New Normal

My son’s health, both physical and mental, has been declining for weeks. It culminated in a crisis last week that I am not sure I will ever really fully be able to put words to here.

Suffice to say it was really, really hard – for him, of course, and for me.

This week, he is beginning to recover a bit.

He is asking to draw for a few minutes at a time and even read aloud with me yesterday.

He asks to play outside with his service dog, Sammy.

He wants to try a new video game with his brother.

He’s making progress and I am grateful. I am so very grateful.

And, if I am most honest, I am not at all ready for this next phase of his recovery.

I am struggling with my own expectations and the reality that is right before me.

Accepting a new normal #specialneeds #specialneedsparenting

For the past year, my eleven year old son has been fighting battles that would bring most adults to their knees. His mental health has been inconsistent at best and his physical health has required more daily care than I ever imagined possible for an eleven year old boy.

It’s been a really, really long year. One that culminated last week in not one, but two trips to the hospital. 

As part of our outpatient care plan (no one thinks the best place for this child is a hospital room) we saw his regular doctor yesterday. He is really, really good and we are so grateful to have found him. He is wonderful with my son and wicked smart when it comes his treatment.

But as we talked through the different options for medications and therapies, I was that mom.

I didn’t intend to be. In fact, I thought I was past this type of questioning. I was wrong.

I was the mom asking, desperately, over and over again, when we would get back to normal.

Gently, kindly, the doctor looked at me and said, “Shawna, you have been chasing normal for a year now. You and your son have a new normal now.”

As something inside me wanted to scream, I brushed away tears and said, “I know. You’re right.”

Accepting A New Normal

The truth is, I love my boy and try to parent him exactly as he is, where he is. Even in the throes of meltdowns, mania and psychosis, when he doesn’t even resemble my sweet child, I try to show him that he is loved unconditionally, even in… especially in the darkest times.

But when it comes to our treatment plan, our therapies and our overall approach to his daily life, the doctor was 100% right. I have been chasing normal for a year now.

This is strange to me, because I don’t even know what normal is anymore. 

But that doesn’t stop me from aching for it.

This morning, I find myself simply trying to figure out what our life actually looks like, instead of what I think it should look like. I am looking up sensory activities for winter and canceling our holiday travel plans.

While it may sound sad, I am finding it to be exactly the balm that my mother’s heart needs.

Instead of scrambling to fix it all, there is something merciful about sitting right smack dab in the middle of the mess and saying, “This is the day that the Lord has made. I will rejoice and be glad in it.”

I am learning over and over again, that this life is not as much about performance and outcomes, as it is about choosing good and taking the very next step.

And so today, I do exactly that.

I take the next step into our new normal.

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  1. So many hugs to you my friend. I hate how incredibly unfair life can be sometimes (many times). I wish you and your son all the best and do hope your new normal becomes easier for you both.

    1. Thank you Cindy. I appreciate your kind words and support.

  2. Lisa Flick says:

    I am facing the same things you are. Amazing that your post showed up in my email just when I needed it most. God knows what I need! My daughter is severely disabled and over the last year her heart rate has decreased. I was dealing pretty well with that when she caught a virus while we were on vacation and had to be hospitalized. The mystery virus was really hard on her and 3 weeks later she is still recovering. Since the virus , her heart rate is even lower- 30s and 40s. I have been calling all of her doctors, freaking out about how we can fix this. Well there is no fix and now I, too have to get used to a new normal. It’s good to know I’m not the only momma that struggles with this. Ultimately I know that God has everything under control and I need to trust in him and just enjoy each day with my sweet daughter. So thank you for your post- it came at the right time for me!

    1. So well said, Lisa – Ultimately I know that God has everything under control and I need to trust in him and just enjoy each day with my sweet daughter. It’s a wonderful reminder for us all. Praying for all of us tonight.

  3. Dear Shawna, I’m praying for you, your son, your family. Hugs.

    1. Thank you so much, as always, Kristi. Grateful for you.

  4. Shawna thank you so much for you sharing your heart. I too have been chasing normal…on and off for 25 years with my son. The Lord reached out to me with your words, pain, love, and your boys. My son just moved to a new group home and I too thought ok maybe things can be normal now. I feel for you sister and pray….how about we just live the life that’s right before us. Love to you and your precious family!

  5. Shawna, thank you so much for sharing this. Just when I’m starting to feel hopeless with our situation I open my email and find a post from you that I can completely relate to. Our 12 year old son has add, anxiety, and depression. We’ve been working with doctors and trying new medications for years now. And while some things have improved, there are many things that have not. Accepting a new normal is exactly what I need to do. This is just what I needed this morning. After the day we had yesterday and coming to the realization that we would be spending Christmas at home away from family and friends just has me feeling so isolated. But, I know that I need to just let that go and make the holidays special for him at home where he feels safe. I love reading your posts. You are such a great mother to your boys, understanding, patient, loving, and strong. Thanks again.

  6. Thank you for taking time and energy to put all this to words. It gives me courage because though our circumstances may be a bit different I feel like you get it. With tears I write this. I have been longing for normal for a long time. I don’t want to do hard any more. I want a meal that is pleasant and a child that fits in typical kid situations among other things. We recently moved to a new community to try a special school for my son with ASD after homeschooling from the beginning. It’s not going as planned and I am not sure how to move forward. My youngest has been having behaviours that are concerning and I just keep ignoring it because I don’t want to face it. I keep fearing the future and then forget to live today. I have been at this homeschooling a special needs kiddo gig for 13 years….you get tired. My heart goes out to you. I know that deep ache of wanting to fix it and not being able to. But it is so true….today, the next step is where I need to place my foot, my thoughts and my energy. Thank you!

  7. Denie Sidney says:

    My dearest Shawna, hugs and blessings to you mama. My daughter is medically fragile and medically complex with a rare chromosomal abnormality. My hubby and I knew before she was born that she would be a handful. I had adjusted to the craziness of work and hospital stays when suddenly her care plan DRASTICALLY changed. One of my daughter’s doctor’s told me in April 2015, “You may have to quit working. Your daughter’s care is very intense. I see you are wearing thin. This new regimen will require more.” Shawna, I had a mini tantrum right in my daughter’s hospital room. I cried. I asked the doctor who’s going to pay our bills? We had private insurance and no SSI, Medicaid, or waiver.
    The last 2 years, God has had to show me that HE HAD A PLAN ALL ALONG. I just needed to LEARN that level of TRUST in HIM. I grieved the loss of Our “normal”–my career, income, my freedom to participate in activities that require income, my self-image, my family’s image…
    I decided to talk to my Christian mentor and go to counseling. Lots of prayer, HONEST, HEART-FELT conversations with God and therapy has helped me return to a healthy place. I think accepting our new normal is a journey, not a destination. The journey is dynamic and ALWAYS CHANGING. Love you fellow Warrior Mom. Thanks for blessing my life with your writings over the last year.❤??

  8. Teresa Engle says:

    I can always relate to your writings Shawna. We went to Disney. Our son was over the top excited about the rollercoasters! But, we were walking on eggshells, catering to him trying to keep him happy, all for it to end the way we had prayed for it not too. As long as everything was about him it was fine, but when he was done….that was IT. He demands what he wants…to sit down or something to eat and thinks you can instantly come up with what he wants…things esclate quickly and he’s yelling, and its absolutely miserable for everyone. It’s the disrespectful way he talks to us and answering questions in our quest to find out what’s wrong…. couldn’t ask questions or even take anfamily photo. Basically nothing was going to make him happy. I broke down in tears in Magic Kingdom… uncontrollable tears. The more we try to be a “normal family”, the harder it gets. I look around at the happy families making memories, I was at my end.

  9. Jacquelyn says:

    Good morning Shawna- I have had experience with both autism and bi polar in my family . I have had great blessings, listening and doing, the natural way. Dr. John Grey( Men are from Mars, Women are from Venus -has wonderful knowledge and shares this knowledge in short videos -titled autism or bi polar. You and your family are not alone. Thinking of you. Jacquelyn

    1. Thank you so much for the information (everything should be adjusted as requested, above). Please let me know if I can do anything further.

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