Sibling relationships are important.

I am the fifth child out of six children. I’ve always been very big on my siblings. And I still am yet to this day. I had the best childhood just being around them.

Fast forward to today. I get to watch my children share a bond as siblings.

It’s my most favorite thing to see. I am the mother of three children one of which has special needs. He’s also my only boy.

He and his sisters share a special bond. They know what he wants without him saying a word.

They’re always spending time with him and checking on him when he’s too quiet.

They make sure they have conversations with him and that his presence doesn’t go unnoticed. Even their friends know and acknowledge him when they’re around.

I think my most favorite part about their relationship is how excited they get when he does something. The things that seem small to others is so big to them especially when he does it.

Recently they had an eLearning day, and my oldest daughter was helping him with an assignment.

Throughout the assignment, he had his moments, but she kept assisting him. When they got to the last part of the assignment, he wanted to do it. His sister was so excited, and I caught it all on video.

I love recording random moments with them. Seeing them love on each other makes my heart smile.

Another thing I love about them is that they’re always thinking of him. Even on their birthdays they’ll choose what he loves just to see him happy.

When were out in stores if they see something that he likes they make sure to get it.

I admire their relationship so much because I’ve heard so many families talk about how their other children don’t acknowledge their children that have special needs.

I consider myself one of the lucky ones because my son has sisters that really care about him.

Sisters that want to include him in their daily lives. Sisters that understand that we love them just as much as we love him it’s just that he requires extra care.

My favorite color has always been purple until I had my son. And its funny that purple still has meaning in my life as well. 

At the age of one my son was diagnosed with cerebral palsy.

There are several different types of cerebral palsy.

My son has hemiplegia which only affects one side of his body and in his case, it’s the right side.

He’s still able to do a lot of things but there are some limitations. He always amazes me when he does the things they say he wouldn’t do. 

During his first year of life, he mostly laid around.

Then when I had my daughter and she started accomplishing her milestones. And there he was trying to do them too.

I remember when he started trying to crawl.

He was three years old. I was staying in an apartment. I couldn’t believe what I was seeing.

Even today I love seeing him crawl. And I truly believe that one day he will walk. 

Now he does so much more than crawl.

He’s able to climb up and downstairs. Drink from a sippy cup which is huge because he’s been a tubie all his life due to aspiration to the lungs when he drinks by mouth.

After a swallow study he was approved to drink by mouth because it no longer showed liquids going into his lungs.

And this is very common in children with cerebral palsy. 

Green became my favorite color when I found out it was the color that represented cerebral palsy.

I love wearing green for Jaylen. I also wear purple for Jaylen for epilepsy and even blue for autism.

But his very first diagnosis was cerebral palsy. We are very big on green in my house. 

Having a child with cerebral palsy has taught me so much.

My son is my most informative teacher and he doesn’t teach me with words. He’s unable to talk. He taught me through courage, strength and most importantly unconditional love.

You know how they say actions speak louder than words?

Well, that saying is true because although I never heard him say he loves me I know he does.  

Overthinking is when you think about something too much and too long. I believe it’s something that everyone does. But I find myself doing it every day. And it’s always about any and everything that my son could possibly do to cause danger to himself.

My son is fifteen years old. He has cerebral palsy, epilepsy and autism as well as a few other medical conditions. He is mobile and that’s where my overthinking comes in at. He is unaware of things that could possibly harm him. Therefore, I’m always thinking of what I need to do to make sure he’s safe at all times.

It’s very rare that I ever leave him in the care of anyone unless he’s at school. And even then I’m worried about whether or not he’s okay. I can’t even go to the grocery store without video chatting, texting or calling to make sure he’s okay. Sometimes I rush home because in my head something is wrong. When he’s too quiet I’ll get up and make sure he’s not doing anything that could cause him harm.

And I know it’s not okay to live like this. It’s just my duty as his mother to make sure he’s always safe especially when he’s not aware of what is and what isn’t safe.

He’s a true boy. He loves amusement park rides, fireworks, go-carts and anything loud. Everything he seems to love gives me anxiety. Except for his love for video games. He doesn’t play them but he does enjoy watching his dad play. He is very active and is always on the go. Sometimes he and his Dad go on car rides without us. And the entire time they’re gone I’m calling. And if they’re out too long I tell him to bring my baby back.

It’s just really hard for me not to think of all the what-ifs because I know my son. People look at his chair and judge him not knowing how much he’s really capable of doing. So it’s hard for others to see through their eyes why I am the way I am.

I’m always asked how my husband and I can find time for each other while parenting. We have two daughters and one son. Our son relies fully on us for his care.

I think for the most part we find time in-between time for the two of us. But most of our outings always consist of us with our kids. And to be honest it’s what we prefer. Being a parent of a child with special needs has some challenging times. It’s not as easy as some of us may make it look. We can’t just leave our kids in the hands of anyone especially our son Jaylen. His needs require lots of time and patience.

So, for the most part, was home. Being in his comfort zone where he’s able to crawl around is how we get to make time for each other. Sometimes we pick a movie to watch. Other times we sit outside and talk to one another. There have been times when we just walked the neighbourhood.

We usually don’t get to date outside of our home until the children are in school. Then we really take advantage of spending time together with just us. Rather it is cleaning the house together, shopping for the house together or for our kids. You just basically must find time in-between times as I stated at the beginning of this.

I think with us knowing our son require so much care we just don’t let that affect our relationship. Although there are times when we’re both frustrated, we still make the best of our marriage. We still tell each other that we love one another every day. Whenever I go in the store I’ll pick up some of his favourite snacks and we’ll eat them while watching tv.

Just random things at convenient times to keep the love alive. It doesn’t take a lot of work to make your marriage work if you are putting in the time.

I’ve been asked how does it feel knowing I will never be an empty nester? And before I was asked this question, I never ever thought about it. I guess because I knew that Jaylen would have to be in our care for the rest of our lives. Every time we talked about our future it has always been that we would purchase an RV and travel the world with him.

I know that one day our girls will finish high school and go on to college. One day they will have their own little families. And although the thought of it has me an emotional wreck, we still have our son who won’t get to experience those things. Therefore, we must make the best life possible for him. And that’s what we are going to do.

Our son is the oldest of our three and our only boy. He has cerebral palsy, autism, epilepsy, and a few other medical conditions. He relies fully on us for his care. He can crawl, and he does a lot more than what was expected of him at birth. But unfortunately, it’s not enough for him to be able to live in this world alone. Which makes him our forever nester.

I must admit it does make me sad that he won’t ever get to experience college life or one day become a father. But I promised him that we will get out and see the world together. Although life gave him some limitations, I refuse to allow those limitations to limit him. And even though he won’t be able to do things that other people his age will be able to do. He will still live the best possible life that we can give him.

I never looked at it as me being a forever nester. I just knew we would always be together. And the thought of it never made me sad or look at it any other way. It’s just what I must do and what I absolutely love to do.

We recently loss my mother-in-law and I often wonder if our son understand that he won’t ever see her again.

In 2009 when my amazing Mom passed unexpectedly our son was only two years old.

After she died, he would always crawl to her room looking for her every time we would go over my grandma house.

He did this for a very long time. And one day he just stopped.

I can’t remember how long it was before he finally stopped.

But every time he would go to her room, we would always tell him that grandma was in heaven now.

I always wanted to know what finally made him stop going to her room but he’s nonverbal so that’s of course something I will never know. (We love and miss you Momma, Ms. Tracy Denise Graham)

Fast forward to today.

We loss my sweet and loving mother-in-law Ms. Brenda Kay “Blondie” Evans unexpectedly in January.

Of course, my son is older now, he’s fourteen to be exact.

Since her death we have gone to her house several times.

I always watch to see his reaction when we go there.

We’re so use to her coming outside to the car with that big smile on her face and he is too.

Sometimes when were there he has moments where he won’t scream, he just sits there quietly and look around as if he’s looking for her.

Then suddenly, a smile will come across his face.

Her presence is still very strong because I feel it often.

So sometimes he makes me feel like he feels it too.

I told him when she passed that she went to heaven too.

I just wish he could tell me that he understands what I mean.

I truly believe that he does because although he’s nonverbal he’s smart.

It is just something I can’t help but to think about.

Have any of you ever felt like this?

In the special needs world behind most family’s people view the woman as being the main caregiver. But in my case things are quite different.

Although I do a lot for my son as far as scheduling appointments, making sure he has the supplies needed to care for him and everything else needed in his everyday life.

My son is truly a daddy’s boy. He prefers his Daddy over any and everyone.

And his Dad prefers him too. That’s his very best friend.

Sometimes I find myself just sitting there watching them as they bond with one another.

He understands Jaylen and Jaylen understands him.

Although its crystal clear to see that Jaylen run the whole show.

My husband likes to make people believe he does.

But the reason you see Jaylen when you see him, is because Jaylen insists on being with him.

He wouldn’t have it any other way and to be honest his Dad wouldn’t either.

 I remember one day I asked my husband how he felt about having a son with special needs.

His response was I feel like any other man with a son. I’m happy to have a little me.

His title as my son means more than any diagnosis.

His diagnoses don’t mean I can’t teach him the things I know.

And to be honest I’m happy to have a son that can teach me.

And I can honestly say that they have taught each other so much.

Together they have hit homeruns, they have participated in races and most importantly they have learned to love each other in a way that no one seems to understand but them.

Our son has never said the words I love you.

But if you ever see the way he looks into his Dad eyes the words aren’t needed for him to know that.

I’m thankful for the relationship the two of them have.

Although sometimes it makes me jealous it also brings me peace knowing that they love each other the way that they do.

Ever since my son was a few months old and up until now all I can remember is completing questionnaires.

It was something I hated doing because it always made me realize the things my son was not doing that he should be for his age.

Every time I filled one out it put me in a bad space.

There were many times I cried as I filled it out. It made me feel like the things he was able to do was not enough.

Although he was able to do some things, they said he would never be able to do.

Sometimes there were sections I would not even complete.

I would just put in big words that the section did not apply to him.

The other day while completing a questionnaire for a service I am trying to get in place for my son they were several sections that did not apply to him.

I could not write in big words that it did not apply to him because I was doing it on the computer.

I could not move forward on the computer without answering the question, so I had no choice but to answer it.

So, as I answered questions, I was also able to leave comments in the comment section.

As I completed the questionnaire, I realized that my son has his way of doing things that they asked me.

And they would not understand because they are not around him everyday to see that.

One visit cannot and will not determine what he is able to do.

So, I decided that I would use the comment section to explain to the best of my ability my son way of doing things.

Like how he does communicate with those who he is familiar with versus people who he barely sees. 

Or how he can go get exactly what he wants instead of asking us. (He is nonverbal)

This time around I was not sad or in a bad space while completely the questionnaire.

I felt good because I know that there are plenty of things my son can do even if it is not done the way we do things.

And we do not teach him how to do things his way he just does it.

The hardest thing about being a caregiver is you can lose yourself while trying to be what you need to be for your child.

I am often told how strong I am by many people.

Because from the outside looking in it does seem that way.

But those close to me know that I often struggle.

Caring for my son is not always easy.

There are days I honestly do not know if I am going or coming.  

I find myself trying to find time and a quiet place where I can regroup for a few minutes just to be able to continue my day.

I try not to show me at my weakest because I never want people to feel like I am not capable of caring for my son.

Caring for him is what keeps me going.

Which is the very reason why I have lost myself because ever since he came into this world my life has been dedicated to him and his sisters.

I do not know how to not be a Mom because it is all I have been for the past fourteen years.

Even when I do get time to myself to do things for myself or with my husband, I am always worried about what is going on at home.

Because in my mind I am the only person that knows exactly how to care for my son.

Even though I know that my sister loves him as if he were her son and care for him the way that I do.

Its just that ever since he came into this world, I have been attached to him and its hard to leave him in the hands of others.

Although I know its good to take time to myself the truth is, I do not know how to do it without feeling guilty about doing it.

How do you make time outside of being a Mom after becoming one?

How can you find your identity again?