Posted in lessons learned

Don’t Pity Us Because My Child Has a Disability

jenna-norman-292396

(Posted originally in The Mighty)

Well meaning friends can sometimes say hurtful comments. Yes, it’s true. It may not be their intention and I believe they love us. But there are times when their words and actions can cut through our hearts rather than heal.

How many times have we heard one saying, “I feel bad for you. This is why I didn’t have any more kids of my own” or “I don’t think I’d be able to do what you’re doing.”

Whether we accept it or not, people seem to pity those who have kids with disabilities. Continue reading “Don’t Pity Us Because My Child Has a Disability”

Posted in lessons learned

Friday Reflection: “This, too, shall pass”

pexels-photo-219998This, too, shall pass.

The saying reminds me that whenever I feel discouraged or depressed, the feelings will go away at some point. And Miguel has been very good at making those feelings pass because he unconsciously would show me his strength in unexpected ways.

When I feel elated because of some accomplishment, the saying helps me realize that whatever achievement I may have can easily be overshadowed by some mistake or Continue reading “Friday Reflection: “This, too, shall pass””

Posted in lessons learned

How blogging helps me overcome negative feelings

laptop-with-blank-screen-on-a-wooden-table-and-a-cup-of-coffee_1232-1220For a stay-at-home mom like me who is caring for a special needs child, a large amount of time is spent at home. Yes, I am housebound. We only go out when we go to our Christian meetings and doctors’ appointments. Other than those, we’re basically just home most of the week.

It’s not because I’m too lazy to bring him outside. I just don’t want him to get sick because it’s cold and rainy. Also, I’ve observed that there are a lot of people sick at this time of the year. When Miguel gets sick, he tends to have seizures and oftentimes, those bring him to the hospital. So, I’d rather spend our days at home and keep him healthy. Continue reading “How blogging helps me overcome negative feelings”

Posted in lessons learned

Lost (A Letter to my Son)

I wrote this letter after Miguel’s first big seizure. I am reposting it here.

16831337_10154957437152567_503573453_nI thought I’ve lost you. It was the scariest experience in my life. When I saw you stopped breathing and your eyes were no longer responding, I thought that was it.

I couldn’t explain the exact emotions I felt during that moment when they were all trying to make you breathe again. There were so many things going on in my mind that I couldn’t make a sense of all of them. It was just the ringing in my head that I could hear. Everything paused and it was only you that I was able to see.
 
They were doing a lot of things on you. I knew something serious was happening. They were in panic mode. I could hear the nurse saying that you’ve already been poked 7 times and they still needed to poke you. You really have tiny veins and it has always been difficult for them to administer medicine to you intravenously. I was told that you were already seizing for 20 minutes that they needed to drill your bone to give you the seizure medicines. I knew it would be painful but you were unconscious so you didn’t put up a fight. 
 
It took them 40 minutes to make you breathe on your own again. 
 
I am so sorry your Dad and I couldn’t shield you from all the pain. We feel really bad that you have to go through all these. We feel helpless. We, too, feel lost many times. But know this, my son, we will always be here to hold you in our arms. I will never tire of watching over you and spend sleepless nights making sure you’re okay… until the new world comes when you won’t have to suffer anymore.
 
It will not be long. It’s almost here. Promise.
 
(Revelation 21:4 – “And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”)
Posted in lessons learned

How I keep organized when caring for my special needs child

It’s not easy raising a child. Double that when you have two. Triple that when you have three, and so on. But when you have a special needs child to care for along with your other children, the difficulty is increased a hundred fold. Yes, it can be tough!

But when I see other moms doing it, I’m inspired. I’ve seen moms caring for not just one special needs child but two. They are super moms! I can only imagine how hectic their daily schedule can be. I have one special needs child and I’m losing my mind at times. Continue reading “How I keep organized when caring for my special needs child”

Posted in lessons learned

I may be suffering from high functioning depression

I am sad. I cry. I feel alone. I am depressed.anxious-5-1431654

Yet, I get up every morning to cook for my family. I do the laundry. I clean the house. I do grocery shopping. I bathe my small kids. I prepare my older kids’ lunch for school. I talk to friends. I’m busy with taking care of the household. I blog. I read.

During the day when it’s busy and I have lots of things to do, I don’t remember Continue reading “I may be suffering from high functioning depression”

Posted in lessons learned

Special needs children have resilient parents

I just finished reading posts from the blog site “Little Zephy’s Mission” and I can’t help but be touched by the resiliency of the parents. I couldn’t stop crying.

I’m not sure if most of you have already come across the story of this beautiful little girl named Zephy but for those of you who have not, please check out her mom’s blog.

Their story reminds me that while most parents have the trait of resiliency, it is the parents of special needs children who have mastered it, I believe. Yes, we have to be brave but most importantly, we have to be resilient because resiliency will help us get over setbacks and move on.

We are not brave all the time but we are resilient always.

How many of us have to clean our child’s G-tube while tears are flowing down our cheeks? How many of us have to control the shaking of our hands because doctors are reviving our child in respiratory distress? And how many of us spend sleepless nights in the hospital watching over our kid hooked to machines? I’m sure you’ll agree that in those times, we are not the bravest though we try to be.

But we are resilient. We bounce back because our children need us.

Posted in lessons learned

Don’t be ashamed to accept defeat

maranatha-pizarras-342561For us parents of special needs children, defeat is one word we would never want to hear. This is because defeat is a negative word. It is the very opposite of victory. So, why would anyone want to accept defeat?

In caring for our beloved child, we have victories and we celebrate those endlessly. But, let’s admit it, we also suffer from defeat. Continue reading “Don’t be ashamed to accept defeat”

Posted in lessons learned

How my other children cope with their baby brother’s disability

13934844_10154357983297567_1470095105814110804_nIt is tough for my girls Sofia (12), Elaina (8) and Olivia (4) whenever their baby brother has seizures and have to be taken by ambulance to the hospital. I remember the very first time that Miguel had a seizure and we called 911,  Continue reading “How my other children cope with their baby brother’s disability”

Posted in lessons learned

Looking back…

As I stare at Miguel fast asleep in his crib, I can’t help but look back at our experiences together both good and bad.

When he was born, I remember holding him in my arms for just a few minutes before they whisked him off to the neonatal intensive care unit. He was so tiny and fragile and I could tell immediately that there was something not right. What I distinctly remember was the shape of his head and how I could feel every bone in it. My three older girls were not like that but I thought that Miguel might just be different. There was nothing to worry about. But when the paramedics came to rush him to the Children’s Hospital, Continue reading “Looking back…”