As an inexperienced mom of twins, I learned a lot of things the hard way — and made a lot of rookie mistakes. I tried to keep the babies up so they would sleep longer (mistake), accidentally took off a little finger when I cut my daughter’s nails the first time (mistake), and let about four servings of valuable breast milk leak all over our refrigerator because I didn’t seal the bag right after a late-night pumping session (kind of disgusting and made me cry mistake.)
I became more confident about the care of my kids, but I started getting nervous as I watched one of my girls develop a little bit differently than the other. As I talked about it with my mom friends, most of the women quickly dismissed it:
“My kid chewed on stuff ’til he was five, she’ll be fine!”
“My kid didn’t say a word until she was three, she’ll be fine!”
“Don’t worry so much…she seems fine to me, and I raised four kids.”
While I tried to squash my fears, the truth was, something just didn’t seem right. As my daughter passed the first year mark, she definitely was not saying any words and seemed extremely high-strung and frustrated. She was an early walker at 11 months, but she quickly transitioned to walking only on her toes. I often watched her play with her toys in an odd way. The rise of autism was all over the news, and of course I had been scanning the Internet trying to figure out what was wrong with my baby. My mommy instincts were going off, but I just wasn’t sure if I could trust them.
Although my pediatrician didn’t seem too concerned, I think she could tell I was. We set up an appointment with a developmental pediatrician for an assessment. Considering I was only two months away from having another baby, I was relieved to be doing something, anything, to help her.
At a neighborhood gathering of Bunco a week later, I was surprised at the response I received when I informed the group I was trying to get my daughter into some therapy. While most of the ladies just raised an eyebrow, one mom — who I really liked and admired — exclaimed: “I cannot believe you are wasting your time with this. You’ll see, right after you have that doctor’s appointment, she’s going to ask for a Happy Meal. I feel like my son didn’t talk until he was three, and now he never shuts up!”
I don’t believe she was trying to be crass or unsympathetic, but neither did I feel she took my concerns seriously. I got the impression I was going to be labeled as the “overprotective mom” of the group.
When I sought other people’s advice, I seemed to get the same reaction. I mean, she was a beautiful little girl who could be a sweetheart. Except something just wasn’t right.
The comments from my Mom friends gave me pause, and I had a long talk with my husband about it. He said the words that I wished my girlfriends would have said to me: “What’s it going to hurt? The only thing you have to lose is time.”
My daughter’s first official diagnosis was “Low Tolerance to Frustration.” Seriously. I am not making that up. Needless to say, I did not share that with my Bunco Group, but I did feel relieved that I was “somewhat” validated in my concern.
As she got older, it became more apparent that she had some developmental issues that we addressed through speech, occupational and physical therapies. We saw several doctors and ruled out various disorders such as Autism (she had great connections with her family, but not a lot of interest in other children), Asperger’s, Apraxia, Dyspraxia, and a host of other -isms and -axias that never seemed to fit. She was progressing, but still was not close to age-appropriate. Most of the time I was thankful I made the choice to put her in therapy when we did, as I could not imagine how far behind she would be if she did not have the support network we had established in the beginning. Sometimes though, especially in the early years when her developmental delays did not seem so significant, I wondered if I was putting her through the ringer for nothing.
My confidence as a mother was constantly wavering.
It took an orthopaedic surgeon to tell us that at the age of almost five, our daughter had a very minor case of cerebral palsy. In his opinion, although it did not show up on her MRI, she had experienced trauma in the womb that caused a neurological issue forcing her lower leg muscles to not function properly. This, coupled with some tight tendons, caused her to be a constant, extreme toe walker (think all the way up on your toes, not just the balls of your feet.) He explained that of course her development was delayed. Could you imagine trying to spend your life balanced on your tippy toes and then process information?
While the news was a shock, I was relieved at the same time. The peg finally fit in the hole. CP often causes issues with speech and fine motor skills, but it was non-progressive, which is why we saw so much growth in her development. I also found that I had several of the risk factors that cause a CP birth, including carrying multiples, pre-eclampsia, pre-term contractions and pre-term birth with associated low birth weight.
Unfortunately, the options for treatment of my daughter’s leg condition were not favorable. The doctor’s first choice was a “casting” regimen that basically would put hard casts on my daughter’s legs at various degrees in order to elongate her tendons. Because of the severity of her condition, she would most likely be casted for 24 to 36 weeks, changing them every 4-6 depending on how she was responding. This did not sound fun, and it only had a 30-40 percent success rate. Not super appealing.
The other option was surgical. The doctor would go in and cut her Achilles tendons, stretch, and then re-attach them in place. She would have casts for six weeks and move on to therapy. The success rate was about 90 percent.
Without really discussing it, the doctor, who I greatly respect and admire, set us up for the non-surgical option, which he almost always does as the first step in a case like hers. Our PT and pediatrician agreed that it was the right path. Most of our family seemed to agree, but I wasn’t so sure.
My daughter was crotchety and easily frustrated. Her communication skills were not strong, and I was concerned about the impact the casts would have on her other motor functions. Additionally, the casts could cause skin problems, which further lengthened the time of treatment. And the liklihood of it working was less than the liklihood it wouldn’t. I did not like those odds.
I went online and did extensive research on the surgery. I read message boards of patients who had went through it. I asked my PT to put me in touch with some parents who had completed the procedure with their kids.
I made a decision. A big one. I had found my Momfidence.
Although both the head nurse and doctor tried to talk me out of it, my husband and I decided to pursue the surgical option for my daughter. There is always a risk when you opt for surgery, but the worst case scenario would be if we tried the non-invasive approach and it failed, leading us to the operating table anyway. Of course it was bittersweet when the doctor came out to tell us that she had one of the most severe cases he had ever seen, and that the casting probably would not have worked.
Since that day, my daughter has completely flourished. She reads above grade level and is great at math, participates in activities, rides horses, and thankfully, has a few great friends. We couldn’t be prouder.
I hope one day if she reads this, she is not mad at me for sharing what really is her story, but I will forever be grateful to her for helping me find my momfidence to guide her, and her sisters, through the rest of their beautiful lives.
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