Our middle son, Levi
by Community Contributor, Annie
Your sibling story touched my heart! Our middle son, Levi, is our only child without cystic fibrosis. We were intentional from day 1 to let him choose his involvement in his siblings’ health. From the time he could talk, he’d been their biggest cheerleader, and he has been right there with my husband and I as we advocate and navigate.
At six years old, he can list the medications and dosing for his big brother and for his little sister. He knows how to set up their breathing treatments, and he could give Grace a
g-tube feed himself (with just a little help with the math). He prays for them daily, he sends them daily notes and gifts in the hospital (since he can’t visit to play with them due to covid), and he even fussed at our oldest when he show some adolescent-like resistance to his treatments and meds.
In a few rare, raw moments, Levi has told me that it’s sometimes hard to be the “healthy kid,” and that he feels like he doesn’t always get the attention he wants. This breaks my heart, and we constantly work to show him how precious he is to us and how vital his role is in our family ASIDE from the care he shows for his siblings. All of that is to say, these siblings are truly fulfilling a high calling, and I am in awe of their strength and compassion. Thank you for this blog. I feel “seen” every time I read it. Hugs to your precious family.
by Community Contributor, Stacy Thibodeaux
“You better be pretty spectacular, little one.” I said, patting my bulging belly. “You've got an amazing big sister to compete with.” Like many moms expecting a second child, I couldn’t fathom falling in love with another baby. My three-year-old daughter, Grace, was, as far as I was concerned, perfect. How could I love another child as much as I loved her?
A few days later, baby Pierce came into the world accepting my challenge to make his presence known. Twenty-four hours of labor, an emergency trip to the NICU when he stopped breathing, and severe esotropia all ensured that baby number two was getting my time, attention, and love, albeit in the form of overwhelming concern - not the kind of “spectacular” I had asked for.
As the weeks turned into months, my concern kicked into overdrive. Pierce didn’t make eye contact, didn’t respond to his name and didn’t interact with his environment. He pulled back from touch, threw tantrums in his carseat when we stopped at red lights and spent hours rocking and rotating his wrists and ankles. Pierce didn’t babble or coo, refused to eat foods with texture and reacted with extreme sensitivity to sound, temperature and odor. He certainly wasn’t meeting any of the What to Expect the First Year milestones that his sister had conquered ahead of schedule. So, well before any pediatrician was willing to diagnose autism, I was convinced that my son was on the spectrum.
Well meaning friends and family dismissed me:
“Stop comparing him to Grace. Boys mature more slowly than girls.”
“Quit expecting so much of him.”
“Pierce is fine. He’ll do things when he’s ready.”
Even my pediatrician brushed me off: “Give him time. You’re over-reacting. All babies develop at their own pace.” As much as I wanted to believe Pierce was okay and that I was putting too much pressure on him to do things by the book, I knew in my gut that Pierce’s delays were not minor and he was not going to “catch up” on his own.
Determined to learn more about autism and the services offered to children on the spectrum, I joined an autism support group. And while I did meet other parents who empathized with the challenges I faced with Pierce, I also encountered negativity, anger, and resentment. Many parents were focused on blaming - vaccines, the environment, even God - for their child’s autism, rather than trying to find ways to help their children achieve all they could. I left the meetings discouraged and exhausted instead of hopeful and empowered. I was tired of being told that I could try this, that, or the other thing but “face it Stacy, it isn’t going to get you anywhere.”
I realized I had to make a choice. I could fret and moan about “why me?” and “why my child?” or I could accept who Pierce was and all that parenting a child on the spectrum entailed. I made the decision to look at his autism as a blessing, not a burden - a blessing I might not fully understand, but one I could learn from and embrace.
I found therapists - physical, occupational, speech - who believed as I did: that every child has potential and purpose. I relied on their support and expertise to teach and guide, not only Pierce, but me. I read as much as I could about sensory processing, proprioceptive input, and oral-motor defensiveness. I pulled out the Teach Your Baby to Sign book that I had used “for fun” with Grace, and resolved to teach Pierce sign language as well. Instead of complaining about services that weren’t available to my son, I took advantage of any early intervention program that was available. And most importantly, I surrounded myself and Pierce with people who truly believed that he could be reached, he could learn, and he could thrive.
I had amazing team of therapists and a supportive family, but nonetheless, when it came to Pierce nothing was easy. Good days - when Pierce actually let his occupational therapist hold his hand to help him use a crayon - were exhausting. And bad days - when he had four, five, six meltdowns - were completely disheartening. My precious little boy, who without a doubt I loved with all my heart (how could I have doubted that I would?) refused to meet my gaze, couldn’t find comfort in my arms, and really didn’t seem to have any awareness of the world around him (except when that world bothered him). What did the future hold for my son? All I could do was was pray and plunge forward.
Slowly though, Pierce began to meet milestones. Accomplishments (that I had taken for granted with Grace) were monumental for Pierce. When he finally repeated “ba-ba,” I cheered and hugged his speech therapist. When Pierce took a sip of milk through a straw, I danced around the kitchen. And when he gingerly put a Cheerio in his mouth and swallowed it without gagging, I sobbed. I was overwhelmed with gratitude and appreciation for every little task that Pierce achieved.
I also found a new appreciation, even admiration, for other parents. Parenting is a demanding job under the best of circumstances. Grace was an easy - even fun - baby to raise, so I had taken a lot for granted, just as I had taken credit when she walked-talked-read early. And when people would comment: “What a sweet little girl. She’s so well behaved.” I beamed with pride. Now though, I was the parent whose child screamed uncontrollably in the checkout lane at the grocery store for no apparent reason. I was the parent whose child who acted like a spoiled brat as he thrashed at me and hit himself. Now I was one of those “overly indulgent moms who couldn’t control her kid” - moms I had dismissed in the past, silently judging: “my child would never be allowed to behave that way.” Talk about humbling.
Pierce is now 18 years old, a senior at Central Catholic High school with a 4.5 GPA and a leader in the school’s JROTC program. He (we) still struggle with eye contact and social skills and driving (OMG, driving! That deserves an entirely separate essay!). But as I look at where my son is today compared to where I thought he’d be, I can see God’s hand in all that he has overcome. I can see the miracle of believing in the power of potential.
Theories abound about what causes autism. I’m more interested in autism’s effect. For me, having a son on the spectrum has profoundly changed who I am - as a mother, a wife, and as the lady behind you in the checkout lane. I’m a more patient and accepting parent: my children are not a reflection of me put on this earth to make me look good. Rather, it is my responsibility to help my children shine as brightly as they can using whatever light God has given them. I’m a more loving spouse: my children’s happiness in intimately tied to the respectful and affectionate relationship my husband and I model for them. And, when I see the harried mom struggling with her “spoiled” child, instead of looking away embarrassed for her, I give her a supportive smile which I hope conveys “I know you’re doing the best you can do.”
Yes, Pierce has met and even exceeded my challenge to be spectacular. And I am blessed and grateful to be sharing his journey.
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