by Kristi Wees
A note from Marcia..
Kristi Wees wrote this guest blog. This article first appeared in Pittsburgh Parent Magazine. Kristi shares the five rules you need to know from her rule book. All her life Kristi has been a “rule follower,” a do-gooder and sometimes a leader, but always a “by the book” kind of gal! But this time, following the rules, and trusting those who were supposed to be able to give her the answers, didn’t get her daughter the help she needed.
And Here’s Kristi…
My pre-child life as a research chemist seemed as far from “motherhood” as one could get, but I’m not so sure it was. Far gone are my days of mixing chemicals, and donning a respirator to take a gas sample to the lab. My days now have been replaced with similar investigative science…let me explain.
The test tubes were replaced with baby bottles (complete with little brushes and tiny parts, thanks to Dr. Brown), the stinky lab chemicals were replaced with stench-filled diapers (that nearly peeled the paint). Oh, and those samples that I once collected and sent to the lab, they have now been replaced with repeated blood draws, hospital visits, and urine collections from a toddler. I promise you, these duties are some that not even the most seasoned “chemist” wants to experience with their own child.
My new job title that I hesitantly accepted, after the birth of my second child, became: “Advocate.” Why was I hesitant, you may ask? Because all my life I have been a “rule follower,” a do-gooder and sometimes even a leader, but always a “by the book” kind of gal! But this time, following the rules, and trusting those who were supposed to be able to give me answers, didn’t get my daughter the help she needed.
When our littlest struggled with colic, reflux, chronic diarrhea, violent tantrums, developmental delays, regressions, food intolerances, and breastfeeding elimination diets, I found few “books” that could have prepared me for ALL of this. Although I read What to Expect When You are Expecting book from cover to cover, I was not reading then to prepare to have a child with special needs. I don’t know many parents who set out to prepare for that. I surely did not prepare myself to be my child’s strongest advocate, until I realized I was the only one who was qualified to fill that role.As a person who played by the rule book, I had put much of my faith in “the system” to help me raise my child to be the “healthiest kid on the block.” What took me longer to realize (than I wish to admit), was that it was time I began thinking for myself, and advocating for my children’s health.
We visited more than 15 specialists…doctors, pediatricians, and therapists. Some doctors told us that they could find nothing medically contributing to our baby’s 14+ hours/day of crying,or that crying was “normal” for a baby. Then, some specialists at the other end of the spectrum informed us that our child was suffering from a “rare” disorder called mitochondrial disease. I, as a mother, did not know where to turn, whose “expert opinion” to believe, or what to do to help my sweet baby girl… until I had no other choice than to listen to that tiny voice from within — my mother’s instinct.
Below are the five (+1) rules of the “rule-book” that I have re-written over the last nine years as a mom. For this once “rule-following momma,” these are just a start for the “wish I would have known then what I know now” chronicles:
1. You know your child best. Period. End of Story.
That means you know them better than any doctor, therapist, or specialist that you are sitting in front of who may spend a few minutes with your child. YOU have spent months and years caring for them. You know them intimately; do not be afraid to be confident in that fact.
2. If something feels wrong to you regarding your child, something probably is wrong, go with your gut, but never stop asking questions and thinking for yourself.
If you voice your concerns and are repeatedly told you are just worrying too much or have “first time mom” syndrome, seek a second opinion and talk with other parents. If your health care provider is not committed to an improved quality of life for your little bundle of joy (and you), then it is time to look elsewhere. Ask other parents for recommendations, continue seeking the right fit for your child until you find the team that can help you navigate your way to a healthier child. Do NOT squelch your concerns until you have dug deeper, for the sake of your child’s health.
3. Use technology to your advantage, and to the advantage of your child’s health.
You have the power of information at your fingertips. USE IT! That may mean looking up medical journals on PubMed (and Google-ing every word you do not understand until you have “interpreted” it into something you can digest. Connecting with other parents via Facebook, Twitter, and communities like WTE to compare notes and sharing advice, can be truly helpful. In today’s world, we have no excuse NOT to be informed, and this goes for all aspects of parenting — including what food we put in our baby’s mouths to the chemicals we allow them to be bathed in, rubbed on, and injected with.
4. Every medical intervention, procedure, pharmaceutical and injection has a risk, which varies from child to child and person to person.
Do not let anyone convince you that “perfectly safe” and “no harm” are possible in the world of medical science. They are not. Read the fine print, including the package inserts on all treatments and preventatives and make an informed decision for your child after you have done your own research (including digging into your and your partner’s family health history).
5. Listen to and trust your instincts above all else .
Your mommy gut, inner voice, gut instinct, whatever you want to call it… is there for a reason. I believe this is one reason we have nine months of pregnancy to hone in on our “inner voice” literally — the little life growing within us. So once the baby arrives, keep this connection and whenever you feel that pit in your stomach that something just isn’t ok… LISTEN TO IT… it comes from a place deep inside you where your child once lived!
And the bonus rule #6
6. Make sure your baby has received their NEWBORN SCREENINGS (NBS)!
When you bring your baby into this world, a lot of the first few days are going to be a blissful blur, but it is crucial to give your baby a healthy start from day one, that you ensure that your baby has their FIRST TESTS… newborn screenings. I knew so little about this test with both my kiddos, and really wish I would have known more (now that my daughter is suspected of a metabolic disorder that was not detected by NBS). These tests screen for conditions that a perfectly healthy appearing baby can have, they are treatable conditions, that when caught early, lead to healthy lives, but when not detected, can result in autism, developmental delays, mental impairment, and even sudden death.
Kristi is a former chemist and scientific sales manager who temporarily traded test tubes for toddlerhood. She currently blogs at www.babyfoodsteps.com about taking baby steps each and every day to a happier, healthier family, all while navigating the twists and turns of the metabolic/mitochondrial disorder that her daughter is suspected of having. Kristi spends her spare time advocating for others with metabolic conditions, working part time as a social media coordinator for an organization that supports families with genetic/metabolic disorders, educating others on the impact food can have on the body, and supporting other mothers on similar journeys. She and her husband along with their two children, Lady A and Big Boy B, just relocated to Pittsburgh, Pennsylvania, from Houston, Texas, and are enjoying the cooler summer weather, which they hope won’t change when the first snowflakes begin to fall!
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom:
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions.
To preview my book, “I Know You’re In There – winning our war against autism” click on http://a.co/a5GWrpM
Contact info for Marcia: