Dear new friends: it’s been 9.5 months since our little one came into the world in early June of 2011. Your blogs and discussions have all been great company for me, and I wanted to reach out and “give back” with our own story. Fiona and I look forward to knowing you all better, either virtually or in real time and place!
When I think back to the beginning, my memory works in flashes–probably the result of sleep-deprivation and new-mommy delirium! So what follows are just a few moments from the early days. More to come…
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“What a little peanut!” the midwife said, which was the nicest thing anyone would say about the thing that fast became the focus of my baby: her size. Then the nurses whisked her away, and there was silence, and when I asked if my baby was okay, the nurse with me wouldn’t answer.
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But minutes later, our nameless kiddo was on my chest, nose smashed from the squeeze, looking wide-eyed and stunned by the world.
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“She’s got good tone,” the first pediatrician said a few hours later, holding her in his two hands, inspecting her back. “Her ears are typically set.” He kept looking at her. “The question is, why’s she so small?” I was lying on the bed. I’d just scaled the high bar of an unmedicated labor–I didn’t have the energy to think aloud with him. Someone said something about “maybe something genetic.” I tried to ignore this. It sounded surreal, foreign, untrue. We stayed the night just to be sure she was well.
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“How did the placenta look?” the second pediatrician asked the morning of our release. “It’s either bad seed or bad soil.” He meant, either I’d provided ninth months of bad nutrition for my baby, or my child began from a bad seed. Which made her a bad plant. When he left, I cried, and then I decided he was just a jerk. This helped. We drove home slowly at rush hour, surrounded by fast-whizzing trucks and SUV’s, and I sat in the back with my baby. The world seemed too hard and fast and sharp-edged for the softness of a newborn. I did not know then how lucky we were–that she’d had no complications, had spent no time in the NICU, that she was well enough for them to send her home.
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Three days after her birth, still stressed by her smallness and the uncertainty of it, we saw our family doctor. He said she was the most alert newborn he’d ever seen. “She’s perfect,” he said. “She’s the perfect size for her!” the nurse agreed. I sighed in relief. I now consider this visit a blessing: it offered us two months of ignorance, two months of normalcy, two months to see our daughter as a perfect being rather than a series of pathologies to address. Every parent deserves this. I thank God for a doctor’s cluelessness.
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She wouldn’t latch. This became the focus of motherhood. Getting that tiny mouth around the boob. We tried, she refused, we drop-fed her, I pumped. But she ate. Two ounces at a time. And she never spit up. To burp her, I learned to bounce her vigorously. Other mothers warned me at first, then stared amazed at a just-fed baby, bouncing in my hands, who kept everyone’s clothes puke-free.
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Two months old, she gave her first gummy, wide-mouthed smile. But beneath the fatigue of three and four feedings a night, I still had the nagging feeling. The echo of that first pediatrician’s concerns. “Maybe something genetic.” “Bad seed or bad soil.” Tests on the placenta had come out fine. “But the other doctor said she was perfect,” a well-meaning family member countered. Still, my husband and I made an appointment for another pediatrician and I sweated it for weeks. I think I knew something was coming, a shift in our parenting, in our lives.
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Thus began the chain of appointments: the pediatrician found the heart murmur. We had an appointment for an Echo. The Echo found ASD and pulmonary valve stenosis. We got her blood drawn. I was convinced she had Turner’s. Then Noonan’s. She gave us her first giggle in the meantime: On September 11. A child of irony. When the doctor called with the results, we had a flight to catch in three hours. You know the story: short arm of chromosome four. We learned the name: something with a hyphen. Our mouths couldn’t get around that second word. Hirshel? Hersh what? Without having the time to dive into the internet, we left for a vacation with family, where aunts and uncles and cousins and great-grandparents met her for the first time, held her, adored her, loved her, and nobody said one thing about her seven-pound frame. She was almost four months old.
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“So we have a special needs child,” I said to my husband, not really knowing what that meant, not knowing how limited, or unlimited, her life would be, but accepting it. My husband was steering the pram around the neighborhood. Fiona was sleeping. A strange calm descended. A calm I don’t always have, but a calm I go back to in the darkest times.
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And then I researched on the internet–landed on this website–read the definition, the description. Learned that my daughter had a 33% chance of… well, you know the statistic. I can’t write it. And I sobbed in the kitchen, and she was sleeping upstairs, and the sadness was no longer the selfish reaction that my baby wasn’t, would not be perfectly able-bodied, but that my baby could suffer, that I loved her so much my heart broke at the thought of losing her in the next two years. And my husband hugged me and said, “If our time with her is limited, then I’m just going to make sure that I love her the best I can, every day.” To this, I wiped my eyes and agreed. She would be our blessing, no matter how long we had her.
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The geneticist was a delightful red-headed cherub. That’s what we called him. The red-headed cherub. He opened a binder, showed us a diagram of 26 chromosomes, all looking like overly-xeroxed copies of broken, black ramen noodles. He pointed to number four. He didn’t tell us anything new. But he told us in a way that made me feel like this life of Fiona’s was just fine as it was. “A deletion,” he called it. Not “a defect.” “A genetic anomaly” rather than an “abnormality.” “Possible intellectual disabilities,” he said. Not “mental retardation.” “She’ll probably always be small,” he said. “She probably won’t learn to crawl or walk when other kids do. But we won’t put limits on her.” And then he and his superior outlined more tests–kidneys, eyes. They’d start with a swallow study.
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Everything a parent can take for granted got stripped away, and we found ourselves rejoicing at the good news that the ENT doctors relayed: She could swallow her own spit! She could swallow breast milk, formula! She was protecting her airway! After a black spaghetti-like tube had been sent up her nostril and down her throat, and after doctors watched on video the two holes of her esophagus and her airway as she screamed through the feedings, the world seemed eternally optimistic! And it also felt surreal–we were elated over a bodily function most of us take for granted. But this is our life now. This is our baseline. We rejoice over small things.
That day, we treated ourselves to Eggs Benedict at a fancy breakfast joint. And from then on, I repeat this to myself as a victory, as a reminder of all our blessings: she can swallow her own spit! She has a slightly dilated left kidney, but both kidneys appear to be functioning well. She has heart anomalies, but they aren’t causing concerns right now. She can see well, she can hear well. She can swallow her own spit. Thank God. And now, our task is to help her develop as best she can. And love her.
And that about brings us up to now. Fiona and I look forward to knowing you all!
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Hi Heather. Fiona is looking absoloutely gorgeous, sounds like she is making really good progress 🙂
You are an amazing writer and your story brought a huge smile to my face! thank you for sharing your journey and I can’t wait to read more about Fiona! WooHoo! She can swallow her own spit! I love it!
Fiona is beautiful. The diagnosis is such a hard time in all of our lives. The thing that sticks out to me is the bad seed, bad soil comment, especially on the heels of the r-word incident. How can someone say that in front of a mother? Regardless Fiona will be great!
Fiona is a beauty! So glad she’s doing well. I look forward to seeing her develop and grow. Welcome to the both of you.
~Carissa (Ava’s mommy)
Heather, Fiona is beautiful! Your story brought me to tears, even though it’s so similar to our own story. Wish you all the best in this journey. Fiona is a star!
Fiona is adorable, absolutely adorable! I am looking forward to getting to know both of you.
Hilary (Magnolia’s mom)
Your story is written so movingly. Not very different from ours, still stings to hear how people in the medical field continually use such terrible language to diagnose our kids. They started picking apart features of my sons face and taking pictures without asking and that was it for me… I don’t care if it IS a marker of something that’s my sons FACE and the body he was born with and I told them Im not open to having a conversation about his looks. Fiona is precious and has a wonderful mom! Looking forward to learning more of Fiona and your family!
Oh, Heather, what a beautifully written story about your beautiful girl. Your red-headed cherub sounds like the kind of geneticist we all would hope to have had. Kind, honest, informative… But no ugly or demeaning language. It doesn’t make it good news, but the change in language is powerful. Thanks for writing.
Fiona is beautiful! Sounds like she is going to have a wonderful life full of love and support.
Your story is a wonderful story. Sounds almost like my Nathaniel. The fact that the geneticist said that MR was a possibility makes me feel so much better now. All the literature I’ve read makes it sound inevitable. I definatly needed that. Good luck to you and your family.
Thank you for sharing, Heather (such an amazing writer). Nichole and I look forward to sharing some of Fi’s adventure with you. She looks pretty darn perfect to us. We can’t wait to see you again. We love all 3 of you!
I want to se hear all about my great neice, neice,& nephew. Every person that comes into my life matters, is a flect on my life line
This may not be the place to take pride in my beautiful daughter and her wonderful husband, but after I read her writing about my precious Grandaughter, Fiona, I cannot help but say Thank You God for the magnificent gift you packaged in our beautiful Fi. She is blessed to have such a wonderful loving Mommy and a Daddy who is wonderful with her. Thank you for allowing me to share the joy within me concerning what we have been given in our family.
Beautifully written, Heather. Through a mixture of smiles and tears I could relate to nearly every sentence of your post, albeit we had a diagnosis a few days after Mia’s birth. The common resonance in so many of our stories, particularly the early days after diagnosis, never fails to strike me. I hadn’t really thought about it before, but the calm you talk about after the initial acceptance that your child is going to need extra time and support to achieve the little things in life was definitely an emotion I experienced too.
Thanks for sharing.
Oh, and Fiona is just gorgeous!
Thank you for sharing your beautiful daughter!! I have to ask, what is the wonderful thing you did to hold her in the bumbo seat? My little Ansel just sways back and forth in his seat because he’s still not strong enough to really hold himself up…any tips would be wonderful!!
Nichole, Fiona is very narrow for the bumbo, so I fold up a thick, wide scarf (see green and blue tapestry thing) and first stuff the middle into the front, so she has support between her belly and the bumbo’s front stem. Then I wrap the ends around her sides and stuff them down into the sides of the chair, again so she has support all around her.
She’s really progressing with supported sitting recently. When I took this photo, she would last maybe 3 minutes before she was hurling herself backward and really struggling to stay up. But now she’ll go 30 minutes with no sign of stopping.
I guess the thing that helped her increase her endurance in the bumbo was LOTS of tummy time. All different variations of it. On my chest, on dad’s chest, on the floor, on a pillow, on an even bigger pillow. We used to aim for 6 15-minute sessions a day. Now we balance tummy time with bumbo time and other supported sitting positions (she does great with just a person’s hands at her rib cage.)
Probably the other thing that has helped her develop strength and stability is a homeopathic remedy her homeopath prescribed, which is often used for people with MS and other neuro-muscular conditions. Lathyrus, I think it’s called.
Soon she’ll start kinesiotaping, which is a way to tape muscles to teach them to activate and get stronger.
Phew, when I type it all out, it looks like we’ve been doing a lot. Why is it that, as parents, we can always feel like we’re “not doing enough”?
Hi Heather…I have some questions for you re: development and naturopath medicine…how can I get ahold of you? My email is wilderfamilymail@gmail.com
Thanks!
I would be interested to hear about your experiences with kinesiotaping. We tried it with great expectations but were disappointed to see no effects. If you see results, I’d love to hear about it as perhaps we need to give it another try and/or be retrained on using it.
Belated congratulations on the birth of your beautiful baby Fiona. I never get tired of reading these stories. They all have common elements, but each one is told in a personal way, from a unique perspective. You are an exceptionally good story teller, with a gentle humourous way of seeing your child and the world. I note the calm you said came over you when you admitted you had a child with special needs. I think having a child with special needs is a good thing. I choose Rochelle. I am thankful for her and I celebrate her life. It is time to throw away any negative connotation attached to different. No bad seeds or soil, just different, and different is good.
Thank you for your comment on my Intro. It is nice to finally be hearing from people. Fiona is adorable!
It’s been several months since this post – how is she doing now with everything? Eating, sleeping, milestones, overall health, etc.? She just had her one-year birthday – wow! How exciting! How are things? How much does she weigh? What are some of the things she is doing? I know every child is different, but I still love to hear about every child and every family’s experiences. I hope all is well!
Hi, Kristin, Fiona is doing great! And she’s wicked cute. You can read lots about her here: http://www.starinhereye.wordpress.com