I am a full-time mom to four beautiful kids -- three girls and a boy. My youngest child, Miguel, has microcephaly. He was diagnosed when he was two months old. Since then, other symptoms surface such as seizures, global developmental delay, low muscle tone and neurological disorders. His doctors have not really determined the disorder causing his symptoms so it's been my quest to do my own research and help his doctors come to a final diagnosis. I started this blog to share with others lessons I've learned along the way.
This morning, I looked at the mirror and stared at myself longer than usual. I saw the lines under my eyes and above my eyebrows. I saw my tired eyes looking back at me. Suddenly, my gray hairs seemed so prominent.
In that precise moment of reflection, my mind suddenly experienced a clarity that has long evaded me. Then, Miguel’s face flashed in front of me. I realized I’ve been mourning long enough to add lines under those eyes and above those eyebrows. I’ve been crying too frequently to make those eyes look tired. I’ve hidden inside Miguel’s world for those three long years.
Yes, I must admit that I’ve been mourning the life that I could have had with Miguel. Outside, I wanted to believe that I have everything under control. I have to stay strong for my three other children and for my husband. I shouldn’t let anybody see the face that I always look at when I’m alone.
Yes, I’ve been mourning the life that I could have had with Miguel. I shouldn’t be because inspite of all the medical challenges he has, he is a beautiful boy. I shouldn’t be feeling depressed with his condition because there are other children who are more medically complex than he is. And yet, I grieve.
I feel guilty every time I give in to despair as though it is a sin to be depressed with my son’s disability. I know it’s not right to feel this way but, I guess, it’s the many confusing emotions that a parent of a special needs child have to go through.
I’ve been mourning the life Miguel could have had and the grief can be overwhelming most days.
(This time, I’m veering off our family’s story for this post. I feel I have the responsibility to give voice to another family who has been experiencing the same challenges we face but has less favorable circumstances.)
I met Grace through a Facebook group for families with special needs children. I saw her posts about her youngest child, Karl. He is five years old but has significant developmental delays. He has also been in and out of the hospital because of persistent pneumonia.
When I met her, Karl has not been seen by a neurologist or any other specialist. What she showed me was a referral from the doctor for a pediatric neurologist. At that time, she has had that referral form for quite a long time. They couldn’t see a neurologist because of lack of funds. We should understand that in the Philippines, although there are some services free for persons with disabilities, most fees associated with seeing a specialist are not.
I learned that Grace is a single mom with three young kids. Her ex-husband has not supported them since he left the family. She earns money by selling goods from door to door in their small village. She brings Karl along, in an old stroller, even when it is raining because there is no one to care for him at home. She needed to go out and sell or they won’t have anything to eat.
My heart was pierced at her story. I couldn’t imagine the pain and suffering she must have had to endure. A Go Fund Me page was created for Karl so Grace could have the means to pay for his medical needs. Before this page was created, there was another nice lady in the Facebook group who organized a campaign and we were able to get enough donations to send to Grace for Karl’s doctors’ fees. She was able to take Karl to a neurologist and he was diagnosed with global development delay. He would be requiring physical and speech therapies.
The travel from Grace’s village to the city could be tiring, especially for Karl. Taking public transportation would take a toll on the child’s frail body. So, it is an added challenge for Grace to bring him to the specialists and therapists. I couldn’t help but feel really bad for her. I couldn’t imagine how she’s doing it, alone.
I’ve been keeping in close contact with her, mostly for emotional and spiritual support. I can say Grace has a very good heart. She loves her children so much that she does her best to provide them with the care they deserve. Even with very limited means, she’s able to continue caring for them. I admire her determination and will.
Just recently, I learned that her eldest child was diagnosed with seizure disorder which required a daily maintenance of anti-seizure medicine. For those of us who have epileptic children, we know what this entails. The child has to receive the required dose of medicine to prevent seizures. And again, the cost of these medicines is beyond Grace’s financial capability. I feel for her.
I can understand some of her concerns, but I won’t be able to completely comprehend what she must be going through. I’ve not been alone in caring for our Miguel. I’ve not experienced having to sell goods outside in the rain with my special needs child in a dilapidated stroller. I’ve not suffered from sleepless nights trying to figure out where I can get our next meal or the money to pay for my children’s medical bills. But Grace does.
I pray for her and her family. Hopefully, this post touches some hearts.
Miguel suffered from multiple seizures again. He had to be hospitalized because his oxygen level dropped too low and he seized in his sleep. This seizure while sleeping is something new to us. So, the doctors wanted to monitor his vitals closely.
We spent the night in the hospital with no seizures. The doctors decided to let us go home the following day. It was a relief for both me and Miguel since we weren’t able to sleep in the hospital that night.
When we came home, Miguel refused to be fed through his g-tube. I knew he didn’t want it because when I was putting his mic-key extension on, he pushed my hand away. I did it again and he responded the same way. So, I figured he didn’t want me to touch his g-tube.
I thought, he would starve. The g-tube was there because he couldn’t feed by mouth without aspirating. So, reluctantly, I tried giving him his formula through a sippy cup. He took one sip, then another and another. He didn’t stop until he finished all 250 ml! He didn’t aspirate or throw up. And just like that, we said goodbye to g-tube feeding. Just like that.
This scenario is all too familiar for me. Last year, he also had a series of seizures and he was hospitalized for three weeks. His seizures were worse that we almost lost him. Those weeks meant very little rest because I had to make sure he didn’t get tangled up with the many wires connected to his tiny body.
But after that ordeal, when we came home, Miguel amazed us with a new skill. Days after coming home from the hospital, I saw him sitting up (which he couldn’t do before the seizures). He was sitting up unassisted. We were all amazed: his doctors and his therapists.
His pediatrician told me this is something she has never seen in her years of medical practice: seizures bringing about new skills to a developmentally delayed child. Most often than not, seizures impact cognitive abilities in a negative way. It’s either the child loses some skill or not gain any new one. Miguel’s case is certainly intriguing.
Well, it could perhaps be just a coincidence. But it could also mean one thing: the brain is such an amazing thing!
Today, we celebrated Sofia’s graduation from elementary. My husband took the afternoon off from work to be in the graduation ceremony of our eldest child. All of us were there, including Miguel.
Honestly, I was thinking of calling our respite worker so we could go to the ceremony without him. I knew it was selfish of me to think of leaving him in the house. But I was thinking I should focus my attention, this time, on my daughter. I didn’t want to be preoccupied with taking care of Miguel. He is usually agitated when in a big crowd especially with loud noise and bright lights. And when he’s uncomfortable, he cries a lot. He doesn’t want to be in his stroller nor in my arms. He just wants to be in his bed, in his room.
I wanted to leave him in the house for one other reason, a more selfish one. I didn’t want to find myself having to explain to others why he’s not responding when being talked to. Or why he is always looking upwards. Or why his eyes look funny. Or why he claps his hands a lot. I didn’t want to hear little children say, “That baby looks weird.” Or see their parents stare at him.
I was selfish… for a moment.
But then, I told myself that Miguel is part of the family and my daughter’s graduation was a family celebration. He is so much a part of our family as my other children. So, why would I leave him? I dressed him up and prepared his things: feeding bag, machine, tube, syringes, and rescue medicine. These are in addition to diapers, change of clothes, lots of blanket and wipes (in the event he throws up).
During the program, he was uneasy and was crying as expected. I wasn’t able to focus much on the ceremony. But I felt good. I felt good because we were all there: my husband, me and our four children. We were all there together celebrating one of our family’s achievements.
I found myself braver today. I didn’t even notice the stares. I was also surprised with myself when one of my daughter’s teachers approached us and talked to Miguel. She tried to get his attention but he was just looking at his hands. I could tell by that teacher’s face she’s wondering why. For the first time, I didn’t apologize nor give an excuse for Miguel’s behavior being a special needs child. I just smiled at her. It felt good.
After the program, Sofia walked up to us and put her certificate on Miguel’s arms. It says a lot with how she feels about her baby brother being there in her graduation. And I know each one of us in the family feels the same way.
Sitting outside the balcony and looking at the quiet sea, I can’t help but feel a sense of calm I’ve not felt in a long time. The kids were inside and for a good ten minutes, I was alone with only the sound of the waves to interrupt my thoughts.
I looked at the clear blue sky and said a silent prayer. I thanked God for giving me the strength when I felt weak and more faith when I needed it.
I couldn’t help but see that life is very much like the sea. There are times when its waves are calm and serene. But there are also times when the strong winds violently hurl the waves in a turmoil. Life can be tough and like the violent waves, it can be scary.
But the sea doesn’t stay that way. It will always return to serenity. And when life returns to this period of calm, you can’t help but be amazed.
I’ve not written a blog entry nor have I updated my journal for about a couple of months now. It’s not that I lost the urge to write. But because I’ve been busy enjoying this period of calm.
Miguel has been relatively healthy for the past six months. No seizures and no hospital visits (except for that time when his g-tube was accidentally pulled out). We are slowly getting to the rhythm of our routine. I also find myself having more “me time” these days. Time for reflection and meditation.
Looking back to when things seemed to be hopeless, I realize that those dark days made the present brighter. They also made me more content and happy with what we have. I’ve been more convinced that there is no point in wishing that things could be different but instead be thankful for the little blessings that come.
For us with a special needs child, life is living one day at a time. There are only short-term plans. It’s enjoying the moment, appreciating the “now.”
Miguel is turning three in September. Time sure flies fast. He’s not yet walking nor talking. But it’s alright. We know he’ll get there. He will.
I never knew what it was to really love unconditionally until I had Miguel.
Throughout our lifetime, we experience different forms of love. We have love for our parents, our siblings, our friends, our spouse, and our children. Normally, we grow in our love for them because of so many reasons. And those reasons include mostly what they’ve done for us.
We love our parents because we know they’ve sacrificed a lot to raise us up. We love our siblings because we know they’d be there whenever we would need them. We love our friends for being there for us to make us laugh, support us or just keep us company. We love our spouse because they are the half that made us whole. And we love our children because they make us feel complete.
But, what if all those reasons are absent? What if that human being will never be able to reciprocate the love you’ve given him? What if is he is not capable of loving us back?
This is what I realized when Miguel came to my life. Having limitations in his physical and mental capacity, he is lacking in the ability to display emotions at will. He is not even socially responsive yet.
While my other children hug me back when I hug them, Miguel just passively accepts it. While I enjoy kisses from my three girls, Miguel is yet to know the functions of his lips. While his sisters make me laugh with their dance moves, Miguel is yet to know how to use his legs.
But I love him just the same.
He may be able to learn to express himself. He may be able to show me he loves me. He may learn to wrap his arms around me and give me kisses. He may learn some dance moves from his sisters. And he may be able to say “I love you, mom.”
But until then, I will continue to love him… unconditionally.
Last year, it would have been difficult for me to write about finding the light at the end of the tunnel. It was a trying period in our family’s life. It tested our faith and our family’s strength. But that year also showed us how resilient we can be.
Our three girls have been an amazing part of this journey. From Sofia, who acted as the “mini mom” while I was caring for Miguel in the hospital, to Elaina who never failed to let me know she loves me, to Olivia, who never missed giving us a good laugh whenever we needed it the most.
It seems that the worst is over…. for now. And in this period of relative peace and quiet, good news are pouring in for our family.
First, Miguel has been relatively healthy with no seizures and no hospital visits for about four months now. Recently, his ophthalmologist told us he doesn’t need his glasses anymore. All his lab tests came back normal. He’s been eating orally (of course, with pureed food) without much difficulty. He’s smiling and laughing a lot. He’s moving around.
Second, assistance from the government kept pouring in. It came to me as a surprise because I was not really optimistic about receiving help soon, being on waitlist for respite for the last two years. But they came. To give me some break from caregiving, they sent me a cleaning lady twice a week. Then, there will be respite for Miguel beginning next month. This will give me time to do the thing I wanted badly: to go back to my beloved volunteer work of helping people study the Bible. How I missed doing it! This will surely give me the mental and spiritual boost that I desperately need.
I can’t help but be reminded by the experience of God’s ancient servant, Job. In the Bible, it was described that he lost all his livestock and his servants. Shortly after, he lost all his children in one night. The last and probably the most challenging test of his loyalty to God was when he himself got so sick to the point of wanting to die. Yes, we may feel that our challenges come one after the other. I felt that. I couldn’t see the light at the end of the tunnel.
But like Job, I know in my heart that God is watching over our family no matter how difficult our situation may have been. I know this because, looking back, I saw that we kept our peace of mind. We stayed sane and composed. Our three girls didn’t falter in their own faith and spirituality, even in their very young age. And just like Job who was blessed with ten times more than he lost, I feel we’re receiving a hundredfold more.
For all these, I am thankful to God who really has never left us.
I guess we’re seeing the light at the end of the tunnel. I’ve always known there is that light but I didn’t expect to see it this soon.
The family has a lot to be thankful for as we start the new year. We definitely had a good start with one good news after another. We may be seeing the light at the end of the tunnel, after all.
Miguel has been seizure-free since November last year and he’s pretty much in good health. This is the first good thing that’s been happening to us. We’ve been able to relax a bit and go back to our usual family routine. I feel like we are in that state of calm after the storm. Everything’s quiet and peaceful.
Another good news we received was that we qualified for some assistance from the government regarding respite and “homemaker” services. This means that I will be relieved of some of the work around the house to focus on Miguel. I will also be having time to go outside and have time for myself because somebody is coming to watch over him. This is definitely a treat for me!
Last week, the agency sent me a cleaning lady and she helped me tremendously in catching up with my household chores. I never thought how two clean bathrooms and vacuumed floor made me feel so much better!
I am sure I will have more time for Miguel when my 4-year old Olivia goes to kindergarten in September. I will be able to focus more on Miguel’s physiotherapy and speech. Hopefully, we’ll be able to do more in his oral feeding too so we can graduate from the tube soon.
We’re hoping and praying that this year brings more good news for us. We know that the possibility of setbacks is still there. Miguel may get sick again or there may be other challenges. But we know that what our family has gone through in the past year made us stronger and wiser to face whatever it is we’ll have to face in the future.
With God’s help, we’re confident we’ll be able to get through this year with a calm heart and a positive spirit.
2017 was a year of “firsts” for Miguel and our family.
Miguel had his first surgery (getting his G-tube). We finally decided to get the tube because all our attempts to increase his weight through oral feeding seemed to fail. We spent two weeks in the hospital.
Miguel had his first major seizure. It was the first of a series of seizures. That first one lasted for 20 minutes which caused him to have respiratory distress. We were told he stopped breathing on his own for 40 minutes.
Miguel’s first time in the ICU because of respiratory distress and seizures. His anti-seizure medicine didn’t seem to be working in putting his seizures under control.
Miguel’s first time to be admitted to the hospital three times for a week each. We spent more days in the hospital than at home during this month. I started feeling depressed and it was my first time to feel so helpless.
Miguel’s first time to be seizure-free for a month (thanks to Topiramate!). Though he got sick with flu, he didn’t have any seizures.
Our family’s first time to experience some normalcy in our routine. Miguel’s been gaining weight steadily and he’s not had seizures for two months.
The past year truly tested our faith and conviction. But thanks to all our loving friends and spiritual family, we were able to pull through. One Bible text that guided us was what’s written on Psalm 55:22: “Throw your burden on Jehovah (God) and he will sustain you…”
We’re on to 2018. We are hoping for beautiful “firsts” this time for Miguel and our family.