Flying by the Seat of Her Pants! – An Interview with Niksmom

She may say she flies by the seat of her pants, but if that is true, Niksmom (Beth) is a really good pilot! Join me in welcoming her to our Sunday interview series!

Tell me a little about yourself and your family.

My first name is Beth; online I go by “Niksmom.” I am a 45 year old stay-at-home mother. I am also a wife, sister, daughter, friend, and advocate.

Because my husband didn’t ask to come along for the blogging ride, I call him Niksdad online. He’s a forty-something “reformed” engineer who has gone back to school to become a pediatric nurse anesthetist.

Nik, age five, is our only child. He was born extremely prematurely (27 weeks) and had significant intrauterine growth retardation; he weighed just 530 grams —a mere 18.9 ounces —and was the length of a sheet of legal paper

Tell me more about Nik’s disabilities. How did you feel when he was born?

It wasn’t until after Nik’s delivery that we learned I have a septate uterus and that the placenta had attached itself to the membranous wall dividing my uterus —which had no blood flow. Consequently, we believe that Nik wasn’t getting enough nutrients during gestation.

Nik spent the first 209 days of his life —four days short of seven full months— in the neonatal intensive care unit (NICU).

Nik’s diagnoses are numerous and varied. His primary diagnoses are Cerebral Palsy, Pulmonary Valve Stenosis, PDD-NOS (Pervasive Developmental Delay-Not Otherwise Specified, falls within the autism spectrum) and Gastroesophageal Reflux (GERD).

You blog a lot about Nik’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about him? What do you personally get out of blogging about him and his issues?

Initially, I began blogging just as a means of connecting with other mothers. I don’t recall what I was researching at the time but I stumbled onto the blog, Mom-Not Otherwise Specified —it’s still one of my favorites. After feeling so isolated for so long, I finally felt like I had found my community! I was hooked.

How have Nik’s disabilities affected you as a person and as a mother? What did you do right? What do you wish you had done differently?

Knowing early on that Nik faced numerous challenges on multiple fronts really forced me to decide in a heartbeat what is truly important to me on a daily basis. Consequently, my house isn’t exactly the neatest and there are many days I feel like I’ve got miles to go before I can sleep. But, the flip side of that is that I am absolutely willing to drop everything to spend time with Nik when he makes it clear that he wants to spend time with Mama or if he’s having a really tough day.

I find that I have so much more tolerance for others; I also find myself looking for the meaning in people’s communications and actions —the unspoken communications we all have.

And faith. I don’t go to church and I am not an overtly religious person but my experiences with Nik —especially in that first year —have given me a sense of faith and belief that things happen and it’s up to me to find the reasons or the lessons.

I don’t’ know if I’ve ever felt like there was something I didn’t do “right” but there were plenty of times I felt like I didn’t know what I was doing.

I wish I had spent more time finding people to connect with who understood what I was going through from a non-medical perspective.

Other things I’d do differently? Learn to ask for help even if I didn’t know what I needed. Take better care of my body; I’d sleep more and exercise regularly— neither of which I did even when Nik was still in the hospital; it’s hard to give yourself permission to be away from your child’s bedside.

What do you want other parents to know?

That, while their circumstances may be unique, they are not alone in any of their feelings; we all share the same joy, fears, and frustrations. Even though someone else’s child may have a different diagnosis or a different manifestation of the same diagnosis, we can always learn from one another.

Is there anything else you would like to share?

I wrote these words some months ago in a blog post but they resonate with me every single day:

“…when some doctor tells you “Your child won’t…” or “Don’t get your hopes up,” don’t you dare sell your child out and buy into that… defeatist attitude. Sometimes all it takes is a belief that it can happen, the determination to create the possibilities —the right environment, the right people— and the ability to love your child more than you fear their labels and limitations.”

I believe this with all my heart and see the living proof every single day in my son’s smiling face.

Pop on over and visit with Nik and his mom at Beth’s blog, Maternal Instincts.

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

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