Behind the Ribbon: Beth and Isaac
Welcome to Sunshine and Shattered Dreams! I am so glad to have you.
My world for the last few years has been advocating. The only story I have been sharing is mine, which is not the only one out there.
This year, I have decided to use my platform to shine a light on the warriors who fight and the parents who advocate alongside them.
Samantha: Please introduce yourself and your child. Tell us a little about you guys:
Beth: My name is Beth and I’m the mama to an incredible warrior named Isaac, who just turned 2. My hubby is in the Navy and I work full-time as the Chief Operating Officer for 1-800-BOARDUP.
Samantha: Can you explain your child’s diagnosis? What does it mean in laymen’s terms?
Beth: He has a g-tube feeding tube, attends 8 therapies per week, sees 18 different specialists, and his only working diagnoses are hypotonia, Global Developmental Delay, and Sandifer’s Syndrome (a neurological response to extreme GERD/reflux). He is currently being evaluated for Dystonic Cerebral Palsy also. Isaac is a rarity in the medically-complex world and requires around the clock supervision and care.
Samantha: How did your journey begin? What was going through your mind at the time?
Beth: Isaac first spent 79 days in two different NICU’s and remains undiagnosed despite having every genetic test available. I had a healthy pregnancy and Isaac wasn’t born prematurely. We didn’t know anything was wrong until my 37-week ultrasound, when I found out I had to have an emergency c-section and Isaac made his appearance for the first time. It was very scary having our whole world flip upside down in just 20 minutes, but I’ve learned to love our upside-down world.
Samantha: What is your biggest fear for Isaac?
Beth: That he can’t fully enjoy life as he deserves. He is the most amazing, brave, and kind soul and deserves to have everything that life can give to him.
Samantha: What is your greatest hope for him?
Beth: That he will live a meaningful and pain-free life free of medical limitations.
Samantha: Tell me a little more about Isaac? What are his favorite things, dislikes, personality?
Beth: He is not independently walking, so he loves being assisted so that he can walk. He enjoys spending time outside and feeling the breeze on his face. He is the happiest person I’ve ever met and finds joy in the smallest of things, which has inspired me tremendously!
Samantha: How do you take care of yourself? The journey of special needs parenting can feel solitary, isolating, and lonely, even though you know there are many more out there fighting the same fight. Where or who do you turn to fill your cup?
Beth: I take Isaac for a walk each night and that helps me get some exercise and stay sane. I also spend 30 minutes to myself each night (when my husband is home and not deployed) and make the effort to take a bath. That has helped me keep the “me” time, even when I feel emotionally and physically drained. I also stay in touch daily with other medical mama warriors and we encourage each other regularly.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Beth: I have learned to find joy in the simplest of situations and ways. Isaac’s name means
“laughter and joy” and he has helped me be happier than I ever was before. I celebrate the inch-stones (smaller milestones than the traditional ones) and truly let myself get excited by any bit of progress.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Beth: John 14:27 says “Peace I leave with you. My peace I give to you. I do not give to you as the world gives. Don’t let your heart be troubled or afraid.” It is very easy to be fearful when we don’t know Isaac’s diagnosis—or what our future looks like. So I take rest in this verse.
What a beautiful story, Beth. Isaac is a warrior on all fronts and I think he will do amazing things in life.
Part of raising a blessing with extra needs is the changing of our minds. We so quickly flow through all these emotions of anger, grief, sadness, denial. We experience fear and anxiety on different levels than before. It is truly a blessing to talk to other mothers who have been there, who are going through this, and getting through together.
I have found rest in many verses of the Bible. I believe that my journey is for a purpose greater than I'll ever know, and what if we were created for a moment just like this. Sharing the life we have so that we may be a light to the path of others, pointing straight to the arms of Jesus.
If you'd like to follow Isaac and his adventures, he has a Facebook page, The Story of Isaac.
I have learned to find joy in the simplest of situations and ways. Isaac’s name means “laughter and joy” and he has helped me be happier than I ever was before.- Beth