Whenever I
am discussing my son’s need for Early Intervention Services or any of his
diagnoses with a peer, usually the first words out of their mouth is “I’m
sorry.” And you know something? I’m likely guilty of this, too. It’s an instinct
and sometimes the words just come out before you can even stop them – like
word-vomit. I know that the intentions are usually good.
You’re
sorry that everything is so difficult.
You’re sorry that there is little time to enjoy the sweet moments of childhood.
You’re sorry that so much of our time is obligatorily spent at some type of
appointment.
You’re sorry that this life that we never asked for is the one that we have.
But I’m not sorry.
Of course,
whenever I pictured my future child’s life, I saw all of the positives: the effortless
running and jumping, endless talking, refrigerators covered with artwork, trips
to museums and concerts, complete with laughter and joy. Our life may look
a little bit (or a lot) different than I had once dreamed, but I am so much more
appreciative of the little things. There may not be long runs and high jumps,
but boy, do those tiny steps he takes bring tears to my eyes. Our conversations
may not be much to an outsider, but my heart understands every word he says.
The coloring on our walls may not be beautiful to you, but I appreciate the
effort that went into each stroke. Outings and scheduled activities may not
appear on our agenda often, but that means that we cherish our time together
even more. I have plenty of laughter. I have joy. We live our own happiness in
our own way.
RELATED: 6 Things You Need to Know About My Child With Special Needs
As a special
needs parent, I don’t expect, want, or need pity. Compassion, maybe, but never for
someone to feel sorry for our circumstances. Instead of apologies, try offering
a listening ear, a helping hand, or possibly even caffeine. I would love company
to an important doctor’s appointment or therapy session. My love language these
days is research, so it speaks volumes when someone is informed on a condition,
treatment, or diagnosis that our family is working through. The words, “How do
you spell that so that I can Google it later?” touch my soul in the deepest
way.
You
don’t ever have to apologize. We are so grateful every day, believe me.
________________________________________________________________
Underestimated Strength is a collection of posts all about our journey through life as we navigate preemie parenting after the NICU. You can read my posts here every Tuesday! Also, feel free to follow me on Instagram, where I speak freely about our story and advocacy.
Do you have any questions, comments or topic suggestions? Contact me via email: kristina.mulligan.blogs@gmail.com!
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Aug 6, 2020
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Aug 6, 2020
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Aug 6, 2020
COVID-19 is causing fear in many and panic in others. In some way, however, we all feel the anxiety – and possibly the soreness of dry hands.
Aug 6, 2020
The idea of inclusivity is a beautiful thing - people of all types of abilities playing together, being accepting/accepted and kind. What is the reality?
Aug 6, 2020
Please join us in the movement!
Oct 1, 2019
Every person in a baby’s life – grandparents, aunts and uncles, siblings, cousins, and friends – could and should be responsible for keeping him or her healthy.
Sep 23, 2019
I've just gotten so used to carrying all of this weight that it appears to be much lighter to anyone looking in. Or maybe they just don't see me.
Sep 10, 2019
The event was a one mile walk/run for people of all abilities, and we were proud to race alongside every participant sporting our capes for our team, Flynn's Superheroes.
Sep 3, 2019
September is NICU Awareness Month. Though the time and place is difficult for me to revisit, I know that it is so crucial to do.
Aug 27, 2019
It's Hudson Valley Parent's 25th Anniversary, so I'm sharing why I blog.
Aug 20, 2019
I sat down with Occupational Therapist Elizabeth Harnett Ms,otr/l to get your top questions about occupational therapy answered.
Aug 13, 2019
This past weekend we attended the 2nd Annual Sunflower Cutting Event hosted by Hudson Valley Cold Pressed Oils in Pleasant Valley.
Aug 6, 2019
This past week may have been Shark Week, but for us, it was “Vehicle Week.” We used our bodies, our senses, and our imaginations to explore all there is to know about things that go!
Jul 30, 2019
I’m a mom, and those three letters carry so much weight, responsibility, and love in so many different ways for every type of mother.
Jul 23, 2019
Hey, I know it's not all cupcakes and rainbows, but I'd rather go through life thinking that it mostly is instead of being like you. You don't sing, you don't dance. So grey all the time!
Jul 16, 2019
This past Saturday, our family attended a Superhero Breakfast at the Old Dutch Church in Port Ewen. The event benefited the non-profit organization Christmas Wishes Ulster County.
Jul 2, 2019
My intent for the month of July is to “be present,” but I want to make this my top bucket list item for the entire summer.
Jun 25, 2019
I know that this is what he needs, so I have no regrets, but as a mom, I feel lesser than.
Jun 18, 2019
Here some things that you should know, being in the support system of a family with a preemie.
Jun 11, 2019
I see you. I’ve been there. I see you, your patience, gentleness, and strength, and sometimes it helps to know that you are not alone.
Jun 4, 2019
I'm a work in progress, but I know a lot about building self-confidence that I need to share with you.
May 28, 2019
In honor of this year’s Stroke Awareness Month coming to an end, I wanted to share my personal story.
May 21, 2019
Ask the questions. Become more knowledgeable. Practice inclusivity. Be compassionate.
May 14, 2019
Have you gotten caught up in the competition of motherhood?
May 7, 2019
We’ve become pretty good friends here, right? I think we have, so I’m going to be honest with you. Ready? Let's talk about the IFSP...
Apr 30, 2019
As a mother of a child with developmental delays, I am often asked the question: “When should I worry that my baby isn’t _______ yet?” and I want to offer my advice.
Apr 23, 2019
There are certain things that are important to remember when you have a loved one with sensory needs.
Apr 16, 2019
Here is a collection of books that never get old at our house, recommended by a pretty cool two-year-old...
Apr 9, 2019
With all of the focus on the negative, it’s hard to remember that there is so much more to two! There are many other things that come with two that are unbelievably far from terrible.
Apr 2, 2019
I sat down with a very special preemie dad to ask some important questions.
Mar 26, 2019
So many books tell us that we need to pursue our greatest dreams and be more than just who we are. But wait, what if that’s not my dream?
Mar 19, 2019
With premature birth being a huge concern in this country, it’s important to spread knowledge and awareness. Can the entertainment industry help with this?
Mar 12, 2019
As a new mom, I didn’t know what to expect, but I knew this wasn’t “normal.” When you don't know what to do, where can you seek help?
Mar 5, 2019
In what ways can prematurity change your parenting? For me, preemie life has lasted long beyond leaving the NICU.
Feb 26, 2019
How can you include self-care into your life without it feeling like work?
Feb 19, 2019
mom•guilt /mahm-gilt/ (noun): the unhappy feelings caused by thinking or feeling like you did something wrong, like missing your child blink, not having time to make teacher gifts, or forgetting that they don’t like scrambled eggs this week.
Feb 12, 2019
How can the stages of grief apply to the NICU experience?
Feb 5, 2019
The words that we choose are more important to children than we realize. How can vocabulary be changed to create a more positive environment?
Jan 29, 2019
We take our toys very seriously at our house. These are some of our favorites! What are yours?
Jan 22, 2019
I'm sharing my personal experience of what it's like as a mother who does double-duty with work and parenting all day.
Jan 15, 2019
Did you know that quick additions and modifications to your current routine can create a more regulated sensory environment for your child? Check out these tips to incorporate sensory activities into your every day!
Jan 8, 2019
Premature babies have immature immune systems and get sick more easily than babies born at term. Learn the precautions that can be taken to minimize risk.
Jan 1, 2019
What makes a New Year's resolution?
Dec 25, 2018
If you know a family that is in the NICU during the holidays, here are a few ideas to make their days merry and bright.
Dec 18, 2018
This year, I organized a Twelve Days of Christmas Crafting Extravaganza for Flynn. Each activity is sensory focused but is also so fun and, of course, holiday-themed.
Dec 11, 2018
After being admitted to the hospital at 27-weeks pregnant with a sudden and severe case of preeclampsia, Kristina's pregnancy went from amazing to scary. At 28-weeks, she gave birth to her son Flynn via emergency c-section. This is Flynn's story.