“I tell all my parents it will be like a roller coaster ride. You will have ups and downs.” This is what the sweet genetic counselor told us once she had delivered Lindsay’s diagnosis back in October. I’m pretty sure I wanted to knock her in the teeth (or something like that!) My smart aleck self thought, “Oh, well, I am so glad you tell all your parents that! But we are talking about MY child. When you are done, you get to go back to your little office and go on with life. Ours has now been turned upside down. It feels as if we have already been on one long roller coaster ride ever since Lindsay was born. With every test we would nervously await the results, and then be almost giddy when they would turn out positive. I don’t know how much more of this ride I can take!” Of course I just cried, muttered something like, “I don’t want to raise a fifty-something year old,” and halfway listened to whatever else she had to say.
It is though; life is very much like a ride that takes us up, down, and sideways sometimes. I have thought about that notion a lot lately. I just finished a book, Bittersweet, by Shauna Niequist, that was recommended by a lady who is in the midst of her own roller coaster ride. (Shout-out to Katy! ) The premise of her book is much like the idea of this ‘up-and-down’ of life. It is the idea that life will have times of sweetness and times that may be bitter. Niequist says of her title:
“Bittersweet is the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul.”
I think about that a lot when I feel really stuck down in the ‘pit.’ I then try to imagine that surely something good must be on the horizon. Some days it is as simple as Lindsay clapping for herself when she sees her reflection in her mirror or just the way she looks at me. Other days it might be laughing until I cry at Carter’s sleepwalking stunts or when Cason tells me he “grew a beard” while waiting for one of us to do something!
We have had a rough past few weeks after everyone in the house got the stomach “bug,” except for me. (After all, who else would take care of everyone?) 😉 As soon as one seemed to be well, the whole process would start over with another one. (At least two of them were courteous enough to have it at the same time!) Then after everyone finally seemed to be better, Lindsay had almost a solid week where NOTHING made her happy. If you know her at all, you know this is completely out of character for her. I got so frustrated several times because I could not figure out what to do for her, and, of course, she could not tell me. I was just longing for everything to be back to ‘normal’ again.
Once we figured out (or think we figured out) the source of her unhappiness, she has been back to her joyful self! She smiles as soon as she wakes up, whenever you pick her up, riding in the car, playing with her toys, etc. And oh, after a few hard weeks, how much sweeter it is!
I love how in her book, Niequist invites us to say thank you and celebrate when life is sweet and say thank you and grow when life is bitter. I firmly believe if we would practice this, the sweet times would become so much sweeter!
When we go through things in life that aren’t as easy as they ‘should’ be, don’t we always appreciate them so much more when they finally do happen? For me I know that I might possibly have been the most excited person on Earth when I found out I was going to have twins and then again when I learned we would be having a girl! As I mentioned previously, it took a long time for us to experience that joy at all, so you had better believe we were going to celebrate every single second! When you have sat back and celebrated with friends who were having babies so easily while secretly dying inside to just experience a little of that joy, it is beyond sweet to finally know it for yourself! You can fill in the blanks of what that ‘thing’ is for you that you have wanted so desperately. Who knows? You might still be waiting.
“You don’t know what the story is about when you’re in the middle of it. You think you do, but you don’t. You make up all kinds of possible story lines: this is about growing up. Or this is about living without fear. You can guess all you want, but you don’t know. All you can do is keep walking.”
I love that quote from Bittersweet. Isn’t it true? Sometimes all you can do is keep riding that roller coaster, even when it is uncertain or scary. I am forced to face uncertainty and fear frequently whenever I have to do a six month “review” on Lindsay’s progress or think ahead to the fall when she will have to go to preschool in order to continue receiving her therapies. I hate not knowing what to expect or having to answer “no” to so many of her milestone questions. It’s a feeling of, “Let’s highlight all of the things she can’t do.” But then, as sure as the roller coaster goes down, it comes back up again as she learns to do something new like willingly bearing weight on her feet when before she would just collapse!
Last week Mom and I took Lindsay to have a hearing test and a kidney ultrasound done, as there can often be issues with these areas as it relates to Pitt-Hopkins. We think her hearing is fine, although it can be difficult to discern when she is not yet capable of following directions. She will be checked again in a few months to see if she might respond to some more sounds. After the hearing test was an hour-long ultrasound! Of course, once again it brought a roller coaster of emotions. We had expected it to take a few minutes. As the technician kept looking while we held Lindsay’s hands and feet still, I just about lost it. Then one look at that sweet, precious little girl’s face, and I realized she was completely HAPPY! I am still amazed at how much she can teach me!
So what I am learning is this; we are ALL on a roller coaster, as much as I hate to admit it. We are not on the same one. Each is unique. But I also know that we will not always be ‘stuck’ going the same direction. Shauna Niequist puts it beautifully as she says, “I don’t know where you are these days, what’s broken down and what’s beautiful in your life this season. I don’t know if it’s a season of sweetness or one of sadness. But I’m learning that neither last forever…It won’t be sweet forever. But it won’t be bitter forever either.”
Whatever you are going through-whether it be the loss of a loved one, a cancer diagnosis, a miscarriage, a broken marriage, or a child with “disabilities,” know that you are not alone. As much as life is a roller coaster, God is on the ride with you. He will never let you go.
“God is our refuge and strength, an ever-present help in trouble.” (Psalm 46:1)
The lyrics to the song, “Never Once,” by Matt Redman have been sort of an “anthem” for me when driving to and from many doctor’s appointments.
Never once did we ever walk alone/ Never once did You leave us on our own/ You are faithful, God you are faithful.
Until next time…