Sometimes Things Are Harder

Sometimes Things Are Harder

It’s just hard, this thing called normal. And we want to share what we are up against, not so you can feel sorry for us, just so you can understand.

One of the things that I personally have a hard time with is when family and friends fail to realize that it’s harder for families with children and family members with special needs to do some of the “normal” things that people do on a day to day basis. Oh yes, don’t get me wrong, we will try, our other kids count on it, but it’s just not going to be common when our choices are to get a sitter and leave someone behind or consider so many extra things.

First and foremost – and likely the easiest to deal with – we have gear people! Our children have GEAR. Oxygen tanks, trach supplies, feeding pumps, special food, medicine, emergency kits. Where they go, their gear goes! But, with that handy pack mule (often known as ‘daddy’) we can move on, because this is where is gets a little more unpredictable and complicated for us.

Some of our children can’t walk on their own and can’t sit in a stroller for a significant amount of time. Often we are asked to go somewhere where Dylan can “just stay in her stroller.” For some kids this works, you would think being up with the crowd is optimal right? It used to work for us, but we have turned a corner. Dylan is developmentally around 18 months and as with every 18 month old, she is fine while we are moving her stroller, but don’t think about stopping because that just isn’t going to fly! She wants to be on the go! Her wobbly, unstable walking gives her a freedom that she won’t willingly give up unless she is being entertained. Neighborhood Barbecues? Harder.

Often more severe special needs people don’t have full control of their limbs so playing and entertaining themselves is very difficult, as is keeping them content when that are outside of their normal surroundings and toys. If we want to be able to go somewhere and it’s suggested they can just sit or lay on a blanket to play, sometimes this won’t work. They can’t easily see or get to their toys this way. Sometimes it will, and we will seek out those opportunities, but please understand… this might not always work for us. Parks? Harder.

A lot of children with behavioral special needs have issues with being over-stimulated. Lots of people, lots of lights, lots of activities? Wow, does this present an uncomfortable situation! Going the movies? Harder. And speaking of movies, some of us have very vocal children who tend to make noises and yell, and laugh out of place.

Most people don’t have to worry about what temperature their child is every moment and the unpredictable heat and cold of outside weather, not to mention water (swimming anyone?). It is not terribly uncommon for little broken bodies to lack the ability to adjust their body to respond to temperature changes. So for parents and family of these little ones their temperature is always top of mind. Heating blankets and cooling vests are a common need. So camping? Yep, harder.

A common diagnosis from brain trauma and other brain related special needs is Cortical Visual Impairment (CVI). One of the very common symptoms of it is that people with CVI are extremely sensitive to the sun. They are fine for small time periods, they can close or guard their eyes, but planning a day at the amusement park? You can probably count them out. We even tried these adorable baby sunglasses but they didn’t work for us. Being outside? Harder.

We have worries that you can only dream of. Being out of our comfort zone only makes those concerns and fears stronger. Going out to eat? Harder! Even if every other patron in the restaurant is understanding and patient, which we know isn’t always the case!

But more important than all of that, we want you to know, even though we recognize that life is hard and you might hear us wish our child could do something to make “normal” things easier, it doesn’t mean that we don’t appreciate every tiny little thing that they do. It doesn’t mean that we don’t see them for the absolute miracle that they are. We want to share our dreams for our children and how difficult things are without being told how appreciative we should be.

I do not intend to come off whining about how hard life is, because even with “normal” being harder, seeing the beauty, love and successes around us is a lot easier for families like ours. Many of us have seen someone we love right on the edge of death at least once, if not several times and this gives us an appreciation for life that typical families can’t imagine. Our special family allows us to live life a little more slowly and appreciate each tiny milestone for what it is.

Even though it’s harder, we wouldn’t trade it for the world.

And to those who do understand and go out of their way to make sure that our family doesn’t miss out on “normal”? We notice. And thank you, your help means everything to us.

6 Comments

  1. I’m really loving your posts here Shannon. I appreciate being educated and I can tell how heartfelt the posts are.

    Reply
    • Shannon Anderson

      Thanks Bonnie – It’s actually kind of fun to write about things that are important to special needs families, I love being able to get inspiration from my social networking groups.

      Reply
  2. Dear Shannon,

    You were writing from my heart with this post. Though we don’t have the same set of circumstances, we have the same momma heart and I can hear the beating yours is pounding. I just had this conversation today with my youngest child and then with the Lord. :) Last week, I started to have it with a friend and stopped because it was the same thing, yet again, and unless you have been there, it is hard to understand. Though this time I felt chastised becasue I was told, there is always someone who has it worse than I do, and I realized that to be true, I finally had the guts to say that I wasn’t complaining, I was just sharing a heart-hurt moment for my dear daughter who had to deal with another transition period on a new med, which meant no real ‘summer’ fun for all of us, not just her. I wasn’t feeling sorry for myself, more than I was feeling like I wish she didn’t have to be in that position, putting life on hold yet again, so we can get healthy.

    Our oldest daughter is our special needs child, she is 18 now. Looking back, it was a little easier when she was smaller than I am finding it is now, basically due to age, size, etc., but the feelings are still the same and sometimes the energy is a little less because I am a little older. Yet, God never changes and for that I am so grateful. And like you mentioned, I wouldn’t give up what we have learned or change my girl, though I wish she didn’t have to endure hard things. I am more than blessed to have known His grace in the measure we have through our journey.
    Thank you for writing, Shannon. My heart needed to read your words today.
    Blessings,
    Dawn

    Reply
    • Shannon Anderson

      Thank you so much for your comment Dawn – I love to hear that I touched you with this post, sometimes you just write and hope that others feel the same way that you do, and even better when they tell you as much! I was so grateful to get this last night. I know as our kids get older things will be different, in both good and bad ways. The older my other children get the more interesting and complicated their activities will likely be! We will just see how things play out. I look to you mother’s of older family members for inspiration and advice and will keep doing so as we all grow. Thanks again, blessings to you!

      Reply
  3. I imagine that nobody would ever really get it without reading it or living it. There are so many things to take into consideration. Thank you for sharing it because I know it’s a challenge every day and not everybody would understand.

    Reply
    • Shannon Anderson

      Thanks Krystyn – Sometimes it feels good to just get it out there. There are so many families that have special needs children that it’s good to just start spreading the word.

      Reply

Submit a Comment

Your email address will not be published. Required fields are marked *