Maddison Ohs, Special-Needs Parenting

My Tiny Little Baby

Why won’t my baby grow?

When I held Maddison for the first time after her graceful entrance into our lives, I really didn’t know what our journey was going to be like. I also didn’t know that after 15 months since her birth I wouldn’t be chasing after a toddler – I would still be caring for her as if she was a tiny little baby.

This isn’t where I thought we would be

I’m not teaching her how to walk, or go down the slide at the park. I haven’t packed up her 9 month clothes – or better yet, I haven’t even pulled them out! Instead we are focusing on tummy time, bearing weight through her arms, shaking toys, and reaching up when she wants to be held. And not to mention swallow – but I’ll save that for another post.

It’s not only her development that is delayed, she is also extremely small for her age. Weighing a whopping 12.5 lbs at 15 months! After her hospital stay for failure to thrive, where we switched her to j-tube feeding, she has started to grow a bit more. But she has a long, long way to go.

She looks like a six month old

She really does look less than half her age. Her features are proportionally small to her frame. I am not surprised that we are asked all the time if she was a preemie. Nope! She’s just our sweetest bundle of joy wrapped up in the smallest package.

We have been left wondering these past few months why Maddison remains so small. Was the malnutrition from her reflux the biggest factor? Is there something in the genetic screening results we are still waiting for? Or is she just small because that’s just who she is? There are so many doctors looking into Maddison’s case, but not one has found us any answers yet.

For every four months in this world, she develops one

It has never bothered me when people ask about her. I love sharing her journey, and I feel people are left inspired by her – I know I am! She is my pride and joy.

Sometimes it is hard to notice when Maddison learns something new. It takes 1-2 weeks for her to learn that a subconscious action can be purposeful, and about another month or so for it to become a habit. Which is a far cry from her older brother, who would learn one thing and have it perfected by the next day!

Because Maddison is so slow, you really have to be watching closely to see where she is going to develop next and foster for that.

It’s a lot of work

It’s hard to navigate the emotions of it all. I feel so confused by her age at times. I soak up her infancy, it’s sweet, but I want her to grow. Everyone around me is begging their children to stop growing up, I’m begging my daughter to grow out of 6 month clothes. And to please lift her head during tummy time. Every day I have to be so purposeful in fostering her development. It is exhausting begging her to reach her next milestone. I’m sure if I just left her she would turn into a sack of potatoes, instead I’m singing, and cheering, and willing to buy anything that she is stimulated by to help motivate her.

When we decided to have children, I knew I would  have to make sacrifices. I knew I would do what ever I needed to do to raise my children, and well, Maddison just takes a little more.

Maddison always has lessons to teach

She has taught me about patience, about the preciousness of time and hard work, to value love and family, and that your limits are only guidelines. Maddison has brought me to a place where my eyes could be open to those around me living with disabilities and differences. She has also taught me about having grace and mercy for those who don’t understand our circumstances. Life is hard for everybody, but it looks different for each person. Jesus came for the weak, and he came for the sinner, and that our identity is firmly planted in Christ regardless of what we have accomplished in life.

I have big dreams for our tiny little girl – and I know He does too. So grow little baby, grow.

14 thoughts on “My Tiny Little Baby”

  1. You are such an inspiration . I know that Jesus’ gave sweet little Maddy to just the right Momma and Daddy. She is His gift to you and you both are His gift to her.

    Well it must be hard to get away times remember to take time for your self , in doing that you will strengthen your abilities to keep on keeping on. And don’t for get a date night or two as well.

    Be blessed in Jesus name.

    1. Thank you Carol, those are such kind words for you to say. I am thankful that I do have lots of support around me so when I need a break I can take it so I can be refreshed and ready for when my kids need me next!

  2. I’m keeping up with little Maddison from afar. I knew your husbands family when we were in our teens. I’ve been so inspired by your fight and the strength you have. She is so beautiful. Keep going Mama! We definitely are capable of more than we ever thought we were!

  3. She is such a cutie pie! My little guy is also developmentally delayed with severe hypotonia, Hirshbrungs disease and T21. I always remind people that he is on the curve, following HIS curve in HIS time. It can be really frustrating though, but also teaches us so much. They are certainly “fearfully and wonderfully made”!

    1. We are all created to follow our own curve. It’s great when we have professionals who know that, and can help us as parents keep our kids on their own their right track. We’ve been so blessed to have such a wonderful, and understanding team to support Maddison – I hope you have the same for you son! But as your son, you know he has the best person on his team: you!
      Sending blessings on your journey,

  4. Every word you wrote is my current Life. Stumbled upon your Instagram and saw your beautiful tubie. I have this way of thinking everyday but my daughter was mentally and physically behind 3-6 months, now at 2 and 1/2 she is mentally on track with a body and mobility of a 13 month old. No one prepares the parents about the life change but to our children it is just their life. My child doesn’t speak yet and just starting to find her feet, which I’m happy bc even at 21 pounds she is heavy lol. I am a private person so sharing my daughter’s journey is quiet but you have such beautiful, eloquent words to express your journey that it brings tears to my eyes just living the life with you through you expression.
    I always say God makes them little bc they make the best cuddlers and we get to enjoy baby time an extra year.

    1. I am glad you have found us, and that you are able to see that there are others walking similar journey’s as yours! It can more certainly be confusing to parent a child who doesn’t have a chapter in the “Parenting 101” book. But as parents we are resilient, and we will love and care for our children no matter what their life path looks like. I really hope you have an amazing group of people supporting you along your journey – as I know community is so important. But at least you know we are in this too!
      Enjoy those extra cuddles, I know I am!

  5. Hello,
    I came upon your blog via Instagram. I am a mama of four biological daughters: 3 of my daughters were born with DDH. We have spent years at BC Children’s Hospital and although I saw others families on their own journeys, I felt quite alone in my experience.
    My husband is also a First Responder in BC, and I would love to support you as a fellow Jesus Following Medical Mama.
    Since you will have my email, please send me an email so I can share with you what I’ve now processed since my first baby’s (now 11years old) open reduction in hope that I can encourage you and maybe avoid some of my lessons learned.

    Sending you love, strength, and peace,

    1. Thank you so much for reaching out to me Krista. Everyday I am thankful that we can use social media platforms like Instagram to bring people who are similar stories closer together. And I’m all about learning through others in our Medical Mama community. Look for my e-mail coming soon 😉

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