One of our favorite musicians is Bob Marley – I mean, geeze, we even had Bob Marley songs playing as our guests were arriving at our wedding! As a kid (and even still), my favorite song was “Three Little Birds.” It goes like this:
“Rise up this morning, smiled at the rising sun.
Three little birds by my doorstep, singing sweet songs of melodies pure and true,
Singing, this is my message to you:
Don’t worry about a thing, ’cause every little thing is gonna be alright.”
When Jax was born, we were not expecting it (obviously!). We weren’t prepared to handle the statistics or the medical diagnoses. We weren’t prepared to have a child in the hospital for months. We weren’t prepared to live with terror and the absolute uncertainty of whether or not our son would live. We were worried. And we sure as hell did not believe that “every little thing was gonna be alright!”
We were not prepared to have a sick child. We did not choose this life.
I have a good friend who lost a child to cancer when he was 16 months old. She was not prepared to have her son spend the majority of his life in the hospital. She was not prepared to teach him to walk in the hospital halls among the machines and medicine. She was not prepared, but unknowingly, she helped me through some of the toughest times with Jax. I remembered what she said about staying connected to her husband. I remembered what she said about taking it one day at a time. I remembered what she said about allowing myself a “treat” (for her, it was a new pencil; for me, it was a walk outside) to help ease the pain and clear the mind. I remembered that she went through hell…
and came back out on the other side.
This weekend we found out that a newborn baby in our community was diagnosed with Cystic Fibrosis. If you’ve been following Jax’s story, you know how close to home this news hit. Piper is gorgeous! But she has a long road ahead of her. They were not prepared for this diagnosis.
As parents, we are not prepared to have children who are sick or require different care. But we can choose how we react; we can choose to come out on the other side.
Will we let the anxiety and pain and terror consume us in a sea of “what ifs?” Or will we keep our eyes on the positive: a successful feeding, weaning oxygen, weight gain, a smile from our babies? Will we allow ourselves a treat now and then? Will we let other families who have been there teach us when we need help? Will we push on to the other side?
Even if every little thing is not alright, there are still a lot of other things that will be.
We did it. We dug deep. We leaned on each other (and you). We trusted our Guardian Angels. We kept our hope. We “smiled at the rising sun”…
And you can, too.
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An Early Start 
You write very well of difficult truths. I am stunned at the courage & beauty manifest here.
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Thank you so much!
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Love Bob Marley and love all of you.
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Andrea – I so enjoy reading all of your posts. It is such a joy to see how far Jaxson has come. I read often but haven’t commented often as I should. But, I just have to say that you are an incredible writer. You writing style is so very interesting, concise, put into an enjoying story telling manner and makes each post a joy to read. Now that you are officially a stay at home mom, I think you should seriously consider writing a book:-)!
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Thanks! We’ll see…so many people have mentioned a book that the idea has started to take root. Who knows!? I’ll get you to help with my marketing! 😉 Let’s get together for some wine very soon!!
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Thank you for this post Andrea. It is such a blessing to see how God has and continues to work in your life and how he is now using you to bless others with your story. God brought you through some tough times, but your testimony with Jax is (and will continue to be) a motivation for Anna and I. We love our baby Piper and the weight of this disease is hard to handle sometimes…but it is important to remember to take it one day at a time. We believe God has a plan for all of this in our lives and others as well and I’m thankful that your story will help me keep that in perspective.
Thanks for pointing folks to our page. We’re truly blessed.
For His Glory,
Jason
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Jason (and Anna) – you’re welcome. I’m so glad to know you’re trying to stay positive and you’re taking one day at a time. It’s very “good” news that Piper’s mutation is common and that there are potential drugs and therapies that will help her. We’ll stick together through this!
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Another great make you think post! What ifs are like regrets, you can’t change anything you can only move forward and, come out on the other side. Learn from your experiences to be a stronger person. Dealing with a child, no matter if they are healthy, or have special needs, or came in a really tiny package is a challenge. For some of us living without a child is the biggest challenge of all. But choosing to help others and stay positive helps us to keep coming out on the other side. Learning that our experiences as parents are not all sunshine and lollipops really is what makes every little thing be all right 🙂
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Libby – your work with IRIS is a gift to all the families who have also lost children. You took heartbreak and loss and turned it into comfort and hope for other families – now that is what I call coming out on the other side!
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Wonderful honesty and great truth in this post. I think us parents expect too much of ourselves often and its great to remind ourselves of reality and its ok to feel “not ok”.
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It’s so hard to give yourself some leeway and freedom to feel sad about what “wasn’t.” But it’s just as important to focus on what IS! It’s a fine line and a tricky thing to balance.
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Bob Marley made sense and so does your post for today. You have to cling to everything you can that is positive because the negatives are just that….just negatives. Stay grounded as that is what is getting you through. You come from good stock, Andrea and that counts too. Jax is going to do well because your attitudes are so good. Just know that you all remain in our home’s thoughts and prayers always. Our love to you all………………….
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That’s right – focus on the positive! I’m sure my dad will love to hear you think I come from “good stock!” 🙂 Thank you, as always, for your words and support.
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While yours is so young, I cannot empathize with them being so tiny, but I have gone through the ringer in processing all of Jp’s sleeper effects and developmental delays (all which are chronicled in my blog) and I completely understand.
And I am obsessed with Bob Marley so you had me at hello. 🙂
I came to realize that being a parent is a gift. And just like any gift, you never know what it is inside the pretty wrapping paper and bows. It may be the thing that you always dreamed of or it may be a little…different..than you hoped. But that doesn’t mean the gift isn’t wonderful. The only thing that can bring you down is if you mourn too long over what it WASN’T. 😉
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Exactly right! It’s so important to focus on the positive rather than what went wrong. Easier said than done, though!
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