Feb 1, 2012

What I've Learned as a Mom of a Special Needs Child

26 weeks with two little buns in my oven.  

When a couple finds out that they are pregnant for the first time what is the most common comment they will say? We don't care if it's a boy or a girl as long as the baby is healthy. I said that myself when I was pregnant with Isabella even though I secretly wanted a girl. And not so secretly, Brett really wanted a girl so he never said that stupid statement. But then life happened and now I have given birth to an "unhealthy" baby. Now I know how stupid the statement as long as it's healthy sounds. But I've learned more than that since my son was diagnosed with Cerebral Palsy.

The system sucks. Thankfully there is a system in place in my country to assist families with special needs kids. Unfortunately, the system is underfunded and overwhelmed by too many families. This leads to delayed services and a system that is looking for any fat to trim. And trust me if your child falls under the mild category in his disability he is the fat. I had to fight to get my services started when Mark was in the moderate category and now that he is almost on track they want to kick him out early. (Services expire on your child's third birthday) So I'm in a constant fight with the state. Thankfully his therapists think it would be a huge mistake to exit him early and they are in the fight with me.

My son is my teacher. I'm learning many things from Mark these days. And it goes far beyond what a kid will do for a M&M during a physical therapy session. Mark works so hard learning new motor skills. He never gives up and he's always smiling. I'll never forget the look on his face the first time he took a step. He was so proud of himself and he had a look of astonishment that he finally took a step. If I had the same level of determination he does, I could do anything. He's also teaching me to slow down and enjoy the moment.


It's a roller coaster ride of highs and lows. Some days are good and other days are bad. The day Mark took his first steps was The Best Day of My Life. But there are plenty of days when I wish I didn't have to deal with CP. But I've learned to hang on to the good days and cherish every single achievement. No matter how tiny the accomplishment may seem to other people, it's huge to us.

Some moms are judgemental. Yep I'm going to ruffle some feathers with this one but everyone seems to know how they would handle having a special needs kid. And have no fear, they will tell you in a heartbeat what you should be doing. They will also talk about you when you're at Gymboree or the park wrongly thinking that you cannot hear them without knowing your child's disability. That's right witch at Gymboree, I'm talking about you, I can hear you. My son has special needs, my hearing does not! Not that you would know since you only talk about me and have never once said one word to me.


You need to grow thick skin. See above Gymboree comment. I have 100 just like them up my sleeve. I'm a work in progress with this one.

Other special needs moms get it. I'm in a multiples club, those ladies get me. For all the bloggers that I "talk" to with special needs kids, they get me too. It's nice having someone who is supportive, but it is essential that you have someone that gets it. It's much easier being on this journey with other people who are in a similar boat.

The guilt will never end, embrace it and move on. Isabella gets a big chunk of my attention since she is my oldest and naps later than my twins. Mark gets a huge chunk of my time since he needs so much extra time and attention. And where does that leave Molly? I try my best but it will never be enough, not in my mind. But I can't dwell on my guilt, I can just try my best.


Your priorities will never be the same. Never! They have forever changed. But it's a good thing, my priorities were a little off before. Now I'm much more focused on my family and my relationship with God.

Normal is redefined. I would never have thought that having a pediatric neurologist, pediatric ophthalmologist, physical therapist, occupational therapist, feeding therapist, and developmental specialist would be part of my life. And I surly never thought it would be normal to take my son to multiple specialists. But that's our life, we have redefined normal.

I love my life. My children are amazing and I love being able to stay home with them. I am so blessed to be given these three wonderful children who are on loan to me. I know that one day I will have to give them to the world, but for now, they are mine to cherish, love, teach, and drive me crazy.



And the fact that my kids that I love more than anything in this world can make me feel like I am losing my mind at the same time is a big lesson in patience. Something that having a special needs son is teaching me, but not very quickly. But even my husband will tell you that I'm a much more patient person these days. And then he would add that it's not saying much though.

Like the city streets, I'm under construction and it'll be years before I'm finished. And just when I think the construction is complete, life will hand me a lane widening project.

Stumbo Family Story




7 comments:

  1. Love this post! I follow your blog so I saw you posted, but you are not linked to the CP Connection. make sure you add your post to the lost so that the other people linking up can find you!
    And I have to say I agree with the fact that other moms of kids with special needs are the only ones that seem to get it. So true! Some of my closest friends have come into my life because of my girls.

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  2. Hey there!

    I don't have a child with special needs but I have devoted my career to working with children, adults and their families (with special needs). I would never be so ignorant as to say that I can relate or even "understand" what challenges (and joys) you and your family have experienced but I hope you won't think me too bold when I say that I would like to say I can empathize, not sympatize with these challenges.

    As far as "those" people who "talk"...too often people who are "afraid or unsure" of something they don't "know" are just plan ignorant and let's just say karma is a BITCH!

    *hugs* to you! (Not the "feel sorry" kind but the "I got your back" kind...LOL!)

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  3. I am farther down the road. I had a son when he was 13 months old who was with his grandparents and he fell in the columbia river and drowned. He was dead for over 20 minutes and was revived. I has 2 boys 19 months apart and he was my youngest. He had severe cerebral palsy spastic quadraplegia, had a feeding tube and the whole works. He never walked again. I took care of him untiled he died when he was 18. He was a lot worse than your situation medically. I know how life changes and priorities change and how you can only do so much. I know it is hard to let others do for you because you can do it better. If you ever want to talk let me know. I have been through the system etc. You have a wonderful attitude. Rita

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  4. I nodded my head all the way through this post. I especially like the last two lines.

    As much as people think they know what it's like to have a child with special needs, they can't truly understand unless they've lived it.

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  5. I just found your blog. Another special needs mom told me about it. My 2 yr old daughter has CP. It's so encouraging to read blogs from mothers who "get it". I'm just starting a blog at abilitybeyondmeasure.blogspot.com

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  7. Loved reading this! Wish I had more time to be out connecting - keep adding in on the CP connection!

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