Discovering a new normal after a special needs diagnosis. Guest blogger Kathy McClelland’s addresses that aspect of special needs parenting, along with many others, in her new book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent. Today, she’s graciously sharing an excerpt from the book with Different Dream readers. Enjoy!
Discovering a New Normal After a Special Needs Diagnosis
After my second son was born with severe disabilities I knew my life would never be the same. I expected to have another perfectly typical child, but when he was born I quickly learned that our life would never be “normal.” This process involved grieving the life I was expecting and all the dreams I was imagining. My life, and my son’s life, had to be re-imagined into something more beautiful than I saw at the outset of his diagnosis.
Discovering a New Normal One Day at a Time
Accepting a new normal doesn’t happen quickly, at least it didn’t for me. Once I realized that I didn’t need to accept everything about my son’s disabilities immediately, I felt more free. I didn’t want my fear of the future to rob me of sweet moments with my baby. After all, you can’t get that first year back. So I tried to adopt a “one day at a time” mentality. Enjoying today. Doing what I needed to do to make it through today and trusting God for what I needed in the future.
This has been something I’ve had to preach to myself over and over again. I tend to live in the future. I’m constantly trying to plan and prepare for what’s to come. For me to live in the moment and deal with the present is much harder. And honestly, I didn’t think there was much good that could come from a baby with special needs, especially as he got older and I envisioned all of the extra effort and resources he would require. I realized if I didn’t stay in the moment, then life was going to pass right by before I could even enjoy what I was preparing for.
During that first year of Nathan’s life I reconnected with a friend of mine who had a child with Down syndrome. I wanted to tap into all of her knowledge and experience and emotions that come with having a child with special needs. Shortly after we reconnected, she got a devastating diagnosis. Breast cancer. The worst kind. Her diagnosis hit me especially hard. Not just because she was my friend whom I loved, but also because it enforced a truth I already knew, but didn’t want to believe. That is, there is no cap on the amount of hard things that you may have to endure during your lifetime. You don’t reach a quota and then you stop dealing with hard things.
The Fear of the Future is Often Worse Than the Experience Itself
Once again it put me in that place of fearing the future and not engaging the moment. However, in the midst of her illness she said some things I will remember forever. One is that “the fear of the future is often worse than the experience itself.” This is true because we can build something up to be such a monster in our heads. It’s awful and terrible and scary. And God is not there in that imaginative nightmare we’ve created. Psalm 42 says that God is an ever present help in trouble. He’s in the moment you’re living presently. He’s gone before you too but you are not omnipresent like God. You are able to only live in one place at a time. And that’s right now.
There is an Upside to Every Circumstance
The second thing she told me that has stuck is “there is an upside to every circumstance.” After her chemotherapy, she said, “I’d rather have hair, but there are upsides to not having hair.” And I’ve translated that to “I’d rather have my child eat by mouth, but there are upsides to a g-tube.” He can eat in the car. I can feed him overnight. I can easily hand him over to someone else to hold since I’m not nursing him. I don’t have to cook elaborate baby foods or cut up food into super small pieces. There are upsides.
Things that aren’t normal eventually become normal to you because you do them over and over again. You master them and incorporate them into your life and routine. And it works for your family. If you can get past the stares and the judgments of other people, then you can embrace the beauty of different and see God’s blessings in your new normal.
You make known to me the path of life:
you will fill me with joy in your presence,
with eternal pleasures at your right hand.
Psalm 16:11 (NIV)
Kathy McClelland is the author of Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent. Her second son was born with a rare (1 in 50,000 births) chromosomal disorder which catapulted her into the world of special needs parenting. A former marketing manager, she now blogs at kathymcclelland.com about finding beauty and hope in the midst of broken dreams. She is also a regular contributor to PreemieBabies101.com and has published on TheMighty.com, EllenStumbo.com and Sparkhouse.org. She lives with her husband and sons in Austin, Texas. You can find her on Facebook at Kathy McClelland and on Instagram at kathy_allthingsbeautiful.
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