The life of a Caregiver

My family and I just returned from our family reunion, and since it was in another state we decided to fly. The trip itself was awesome, however flying with our son has its challenges.

First of all, my son is g-tube fed, and we had to pack 5 days worth of formula. TSA has strict rules against carrying liquids, so they had to do vapor tests to make sure the substance wasn’t toxic. I also had to get patted down to ensure that I didn’t have any dangerous items on me.

Secondly, he has prescription and over-the-counter medications that I have to give him. He also has a hand-held suction machine that he uses regularly because he suffers from nasal abnormalities. This machine had to go through additional screening.

Lastly, he cannot sit or walk without assistance, so we had to take his stroller on the trip. Not to mention the fact that he had to sit in my lap on the plane, making traveling very uncomfortable.

The best advise I can give you if and you find yourself under similar circumstances is to come prepared. Make sure you allow yourself enough time to go through all the checkpoints. Also, try to pack everything you don’t need on the plane in your checked luggage rather than your carry on. This way you and avoid getting pulled aside.

Make sure to call the airport ahead of time to find out what their policies are for wheelchair assistance, visual and hearing impairment. Most airports can provide help if those individuals are traveling alone. They will also let you board the plane ahead of others.

Hope this helps. Safe travels!

Over my son’s 5 years on this earth he has undergone multiple surgeries and procedures, requiring both short-term and long-term hospital stay. There were many nights of watching doctors come in and out of his room to take vitals, run tests, obtain blood and checking on his bandages. Many nights of lying on the couch next to his hospital bed waiting to find out when we can take him home.

I don’t recall ever feeling so helpless; at least not from the perspective of a parent. There was nothing my husband nor I could do to ease his pains or change the situation. Nothing but wait, listen and pray.

Sleepless nights and stressful days consumed me, and I couldn’t understand why God was allowing an innocent child to go through this experience. He didn’t deserve it.

However I have learned that I am strong…stronger than most. I was created to be his mother because God knew I could handle it (despite the days when I don’t feel like I can). I have been through some dark points in my childhood, which have obviously prepared me for life as an adult.

We never know what we are capable of until we are tested. Everyone wants an easy life with no major problems or trials. But trails bring growth, humility and appreciation. It helps us to learn how to love unconditionally, and to determine who really loves us.

So yes, my little guy had been through a lot, and unfortunately he has more hurdles to climb in the future. But he’s still one of the strongest people I know🥰. He’s a fighter!

I have been having a hard time focusing on blogging on a regular basis. I told myself that I would post at least 4 days a week, but the practice of putting my thoughts out in the open has been a bit difficult for me.

Don’t get me wrong, despite how previous generations have been taught to keep their emotions to themself, I am a firm believer that doing so is damaging to our mental health. But it’s easier said than done.

There is a range of thoughts and questions going through my mind regarding putting my life out in the open on social outlets. Will I be judged for my feelings towards being a caregiver? Who actually cares about my daily struggles? Does my blog actually help anyone?

Yet I try to remind myself of the reason I started this blog in the first place. I want others to understand the life of a caregiver.

Thanks for listening 🙂

Some children with developmental disabilities show their frustrations by aggressive and/or self-harming behavior. For example, my son goes through periods where he digs his nails in his own fingers causing them to bleed and leave sores. Then there are times he scratches, pulls hair, kicks or bites others, or has a full-on meltdown when he doesn’t want to do something. Thankfully his nurse, and physical therapist are patient and fully aware that this type of behavior comes with the territory.

I will admit it challenging for me and my family; especially when we are out in public. The goal is to try and stay calm, even with people staring and wondering why I can’t control my kid. Now there are individuals that know us personally, so they understand the situation and try to be supportive. I try to not concern myself with the rest of the world’s opinion concerning the matter, since they don’t know me or my child and couldn’t possibly understand the situation (unless of course they have a child or relative with developmental disabilities).

The other thing that is challenging yet necessary it to set boundaries and consequences. Aggressive behavior IS NOT OKAY. I can understand the why, but allowing him to harm himself or others cannot be ignored or accepted. Now that he is getting a little older, the aggression is becoming more frequent, so I will be speaking with his PCP to see what measures we can take to help. In the meantime, I just have to remember to stay calm rather than getting upset.

My husband’s family has a reunion in a few weeks, and we will be traveling by plane to attend. Although I am excited for the opportunity to get away, see the sites, and enjoy good food, music and conversation, I can’t help by fee apprehensive.

Traveling with our son can be challenging, because he is not only hyperactive, he is g-tube fed, and unable to stand or sit without assistance. This means we must bring his wheelchair or his heavy duty stroller, in addition to his feeding supplies and medications.

There is also the issue of my inability to participate in “adult only” activities without a trustworthy babysitter. Not everyone is experienced in caring for someone with disabilities. And not everyone is willing to sacrifice their night-on-the-town for our sake.

Now that last part may sound a little selfish to some, but I created my blog to have an open, honest dialogue about the ins and outs – highs and lows of being a caregiver. And the truth is, being left out of events, adult or otherwise, can make one feel lonely, isolated and even resentful. Lord knows I’ve spent several days and nights feeling this way.

But rather than over-analyze and obsess over a possible scenario, I am going to focus on the bigger picture. Despite the circumstances, we are will be attending a 5 day family reunion, and I want myself and my family to enjoy every minute of it. And if we are blessed with an aunt, uncle or cousin that volunteers to take on the task of caring for my kiddo for a few hours, then I will be grateful.

People with disabilities are always being told what they can’t do or won’t be able to do. There are so many limitations put on them and that has to be so frustrating.

For instance, my 5 year old Christopher is unable to stand or walk without support. He uses a wheelchair for transporting him back and forth to school, and we put him in his stroller whenever we go to a grocery store, restaurant or outing. About 3 or 4 weeks ago, I decided to put him in the front of the grocery buggy to see how he’d do, and what-do-you-know, he sat up fine. As a matter of fact, he laughed and smiled while I shopped because it was new and fun for him.

This made me think about how I too had been putting limitations on what he can do. So when we decided to head to the mall on yesterday, I suggested putting him in one of those carts for kids to ride in. Another great day! News flash —-Never put limitations on anyone. The future is to be seen and experienced – not dictated.

I have found that people tend to view being of service to others as a lowly position to be in. The work of our landscapers, cooks, housekeepers, nannies, and even stay-at-home parents is often seen as a necessity that we would rather have someone else handle.

I am not exempt. Before I had children of my own, I used to say that I never wanted to be a stay-at-home mom. My career was important to me, and after my daughter was born I went back to work 8 weeks later (as most mom’s do). After my son was born things changed. He was in the hospital for almost 3 months, and when he came home he required a full-time nurse as well as therapy session throughout the week. Not to mention the multiple surgeries and procedures he underwent within the first couple of years of his life.

There have been times that I have felt under-appreciated, overwhelmed and overworked since I started being a caregiver. And it’s during those times that I am reminded that even Jesus was sent to this world to be a service to others. Although this job entails a lot of sacrifice, tears, late nights and early mornings, it is yet a blessing to be a blessing to someone else.

Thanks for reading!

I know that the month of May was Mental Health Awareness month and we are now in the month of June, but there is a strong sense of urgency for my own mental health. For the past few months I’ve been having more and more days of self-doubt, crying spells, drinking too much, anger, anxiety and problems finishing thoughts and tasks.

This goes back to my previous post regarding self-care. We often spend so much time and energy caring for others that we put our own physical and mental well-being last. I am no different. Yet I am grateful for the individuals that have chosen to share their experiences through this site, because it has helped me process my emotions and learn how to take action.

It is important for me to do the things that keep me stable minded – such as meditation, exercise, healthy eating habits, and getting enough rest. In addition, I have decided to make a conscious effort to find a therapist that can further assist me in dealing with my issues. Thanks for reading..

As a mother in today’s world, I find myself constantly tending to the needs of others. I unconsciously tell myself that I am superwoman. But as I read through some of the blogs regarding mental wellness and health, I start to realize that self-care is equally important as caring for others. I can’t be a productive caregiver if I don’t take care for myself.

Just the other day I received a text message from my doctor’s office reminding me that I need to schedule my annual checkup, yet I still haven’t gotten around to it. However, I have taken both of my children to their scheduled appointments. I also take natural supplements for my blood pressure, but haven’t actually checked my bp in a couple of weeks (we have the hand held machines at home). Not to mention the fact that I continue to push back my exercise days, because I am either too tired or too busy.

This cycle has to stop. There are far too many people dying, not just from senseless violence, but of health problems that can be prevented or at least tended do. Self-care is a must happen today – not tomorrow!

A few years ago my son had an “episode” that looked similar to a seizure. His body tightened up and jerk, and his eyes began to glaze over. I was scared and anxious of course because that was new for him and his diagnoses (Charge Syndrome). I packed him in the car and rushed to the emergency room for tests, but the CT scans showed no signs of a seizure.

Last night he had another one of those episodes, and he didn’t calm down until after 5:00 am. I am dumb-founded by information I found online concerning the misdiagnosed cases of epilepsy, and how there are other brain abnormalities that can mimic seizure-like activity.

There are so many days that I want to go back to working full-time or at least part-time, however nights like last night make leery of doing so. How can I go to the office without sleep? Just saying…Just venting.

Whether you are a caregiver/parent of an individual with disabilities or you are the individual, you understand that progress in any form can be slow. Tasks such as walking, talking, socializing, or even going to the bathroom without assistance can take longer than most to master. However, it’s important to be patient.

For example, my son is now 5 years old, and hasn’t met several milestones. He is non-verbal, he cannot walk (work in progress), and he has been on a feeding tube since birth. These issues speak to the major role that vision and hearing plays in his health and social well-being.

I continue to remind myself that he is working toward his goals through physical and speech therapy and that he works at his “own pace”.