Making Time to Date

For most parents that have children with special needs or children at all Valentine’s Day isn’t a big deal.

Anniversaries probably aren’t celebrated either.

The truth is that most of us don’t make time to plan anything because were always busy with something.

It could be work, the kids, cleaning the house etc.

And what we don’t realize is making time for each other is important too.

In my house holidays such as Valentine’s Day isn’t something, we make a big deal out of, but we do celebrate it. We celebrate it at home with our kids.

Our house is really our favorite place to be because its where we are most comfortable.

On this day my husband and I usually shop for the kids as well as a card or something for each other.

We than decide what we’re going to cook and cook it together.

Usually after dinner once finish getting the kids ready for bed we cuddle and watch a movie. But that all depends on whether Valentine’s day fall on a weekday or weekend.

If it falls on a weekday, we don’t usually celebrate it until the weekend.

We also learned how to make time for each other between times.

For example, instead of going straight to sleep at night we usually stay up a while and talk to each other.

We also try to do at least one breakfast or lunch date through the week while the kids are at school.

My husband is disabled too so he doesn’t work but while I’m on my way home from work we talk on the phone until I get there.

One of our favorite things to do together is watch movies.

Usually its whatever I want to look at.

After we put the kids to bed, we pop popcorn and go in the garage to watch movies on the projector screen.

It’s just like watching a movie at a theater right from home. You’ll be surprised at how much time you could make in between times for each other.

Making that time for one another is just as important as you taking care of children and yourself.

Vacationing With Jaylen

Before my family and I started going on vacations we would always change our minds.

Reason being we weren’t comfortable with people staring not only at my son who’s in a wheelchair but my husband whose an amputee.

I often talk to other families who feel the same way about taking their families out.

So, they just stay home rather than go out and have people stare at them.

Which is something I try to encourage them not to do and I always tell them my experience from our first and second family vacations.

It was about three years ago when we started going places. I’ll never forget our first vacation.

We went to the Great Wolf Lodge in North Carolina.

This place isn’t very accessible but there is plenty to do.

We decided to go here because our kids love water especially my son. And it’s an indoor waterpark. I hate being outside!

While there of course we got the stares on the elevator or in the restaurant. But when we were in the waterpark the attention really wasn’t on us.

So, we really got to enjoy ourselves. The experience was amazing, and we have gone there every year since our first visit.

Our second vacation was at the beach.

The experience was not as good.

Well with us not use to going anywhere we were thinking we could take our son to the beach in his wheelchair. Well we found out that wasn’t going to work.

We ended up carrying him while still in his wheelchair to the water. By the time we got there we were bombed.

You know how the sand can take a toll on you when you’re walking through it.

Well imagine walking through it carrying a sixty-pound boy in his wheelchair.

When we got by the water of course people were staring at us because we just carried a wheelchair with our son in it. But the stares didn’t bother us this time.

I guess because we were tired from carrying the wheelchair. We just focused on enjoying ourselves and not on the people wasting their beach time looking at us.

Luckily, they have those beach wheelchairs that you can now rent when you go to the beach.

And there are a lot of more accessible beaches now.

So, when looking for places to visits don’t think about what others may think, don’t think about how people may look and of course you may run into some problems but most importantly have fun.

My G-Tube Kid

I was nineteen when I had my first child Jaylen.

He was born with some medical complications.

The hospital where I had him decided to transport him to another hospital, that specialized in neonatal care, the next morning.

Jaylen stayed in the NICU for a month before coming home.

While there some tests were completed.

Two of the tests led to them initially having to place a g-tube as well as do a Nissen fundoplication (basically a procedure where they wrap the stomach around the esophagus to stop you from aspirating).

One was to test his sucking reflex which led them to a swallow study.

The swallow study determined that he was aspirating and he was diagnosed with GERD (aspirating is when something enters the airway or lungs.)

Before placing the g-tube they placed a temporary feeding tube which ran through his nose, down the throat and into the esophagus that end in the stomach.

They used this method to feed him until they did the surgery.

Once the surgery was finished, I remember him having this tube coming from his stomach that looked like a water hose.

It was about two days after the surgery when they placed the g-tube.

After, they showed me how to use it. I was so afraid I was going to hurt my baby.

I had to stay overnight at the hospital to be monitored while feeding him.

They had to make sure I knew what I was doing before discharging him.

They had Jaylen on a two-hour feeding schedule doing bolus feedings (a feeding method in which you pour the milk in the syringe, connected to the extension which links to the tube placed in the stomach.)

Some people also call it gravity feeding because when holding up the syringe gravity pulls the milk down.

All I knew was – I had to do everything I needed to do to take my baby home.

After getting Jaylen home I had to show my family how to feed him. For the most part I was the only one to attempt it because, just like me, they were afraid of hurting him.

Now let’s fast forward to today. Jaylen is about to be thirteen years old and he is still tube feed.

He must get a swallow study done every year to check to see what he can and can’t eat.

Right now, he still can’t get thin liquids by mouth, but he can eat some foods.

I am very proud of his progress!

Most people think because they are g-tube they won’t be as healthy as other kids.

Well Jaylen is now eighty-two pounds and has always been chunky.

The best thing they could’ve done for him was to give him that tube. And I am a happy g-tube MOM!