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.
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.
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.
A “victim of circumstances or a victor over adversities.” It immediately hit me. Yes, I have a choice.
But, I have to admit that there are days when I feel a victim, trapped in an endless barrage of challenges without any way out. It is like being in a maze where every door I choose leads to a series of doors leading to more rooms where I have to contend with an enemy in each of them.
I have to admit that there are things that I can no longer change in my life such as having four kids, being a stay-at-home mom, and caring for a child with disability. I have to admit that there are things that I can no longer do because of being housebound most days taking care of a sick child.
There are days when I can see the light at the end of the tunnel but there are also days when it’s just dark clouds above my head. There are some days when I ask “Why?” and in other days I find the answers.
I don’t know what will happen tomorrow. But today, I choose to be a victor.