I used to worry how I will explain to EA the condition of his brother. I often wondered how I will explain to him cerebral palsy in such a way that his young mind will understand. I have all these worries for so long and I even researched topics about it. But later, I realized that just like anything, that moment of “the talk” will happen when my child is ready, and that he will come to me when he is.
It is when he was 7 and Little H was 3 when EA started asking questions. He begun his curiosity by comparing Little H with their cousins who are of the same age as his little brother. He asked why their cousins are walking and Little H is not; why their cousins are talking and why Little H is not. He asked the questions with so much innocence. I can see that he was trying to reconcile and make sense of everything. At that point, i knew, EA is ready.
For almost a year, Little H’s nanny has been very dependable. I was amazed by her patience and concern for my son. She was very much involved in taking care of Little H and has been taught so well by his therapist. In short, she knew so well how to take care of our Little Boy. So it came such a big surprise to me when one day she decided not to come back after taking her usual scheduled day off. No hint or whatsoever. She said her reasons (via text , no less!) but I find it shallow. But nevertheless, we have no option but to take it as it is.
To say that it was tough losing her was an understatement. It was a challenge. We immediately started looking for her replacement since we definitely need a helping hand in taking care of Little H. As days passed that we did not have a nanny, I came to realize a lot of things. And these realizations made my understand why “losing that dependable nanny” event has to happen.
It has been a yearly tradition for our family to have Visita Iglesia every Maundy Thursday and Good Friday. We do it two nights in a row just so our kids, EA and Little H won’t get tired from driving from one church to another. It was something that we always look forward to, and this year, I already planned the churches we will visit and our itineraries for those two days.
However, our plans made a 360 shift when Little H got sick which started on Palm Sunday morning. He had raging fever of 39.3C but we can not seem to see any obvious cause like cough or colds. We initially thought that it was Tonsilitis but then I scratched the idea since he was eating so well. Monday came and still fever is on and off despite taking paracetamol. We visited his pedia, taking with us the results of his urinalysis which also showed normal results. His pediatrician, Dra. Tita Villanueva-Uy, having been Little H’s pedia since he was born, was also concerned about his fever. The usual suspect, pneumonia, is of the running since his lungs are clear. Thus, she ordered for a complete blood count (CBC) that night. We got the result the following morning which showed that his platelets are way below than normal range. She asked that we had it repeated the following day, and we did. It was alarming how quickly his platelets dropped in just 36 hours. She then asked to take Little H to the hospital. Her hunch is correct, our little boy has Dengue fever.
Just this week Little H was admitted to the hospital again due to pneumonia. It scared us, and memories of December 2012 came back when Little H had to spend his first Christmas in the Pediatric Intensive Care Unit (PICU). Second to his preterm birth, it was one of the most challenging times we had as a family. Good thing that Little H was a strong boy and his hospitalization took only 3 days this time.
Now that he is at home with us, it made me look back at our Christmas celebration last year, 2013. It was memorable and emotional because it is Little H’s first Christmas at home. Let me share some of our photos:
The past few days we had been very busy looking for the best high chair for our Little H. Alright, I admit, for Dads this might be a very easy and “no-brainer” task but hey, I am a Mom and so I am allowed to be very picky before finding the right one, after all, high chairs are not very cheap, right?
Aside from dining, Little H will also use his high chair for playing and therapy activities especially on his sitting program. Thus, the one that we will buy must meet all these requirements. I initially knew that it must be a convertible chair because most of his play activities are on the mat. There are very limited high chairs that are convertible and to be honest, I only found two, but luckily, with distinct material, so we can have a choice. But both of them can be a high chair when elevated on its stand, and a regular chair (with straps) which can be placed in the floor, and the stand can function as the table.
For H’s second birthday, we opted for a low key and intimate gathering with just our immediate family and H’s friends. Yup, my H has a group of friends already. These are families of Hendrix’s fellow babies in the neonatal intensive care unit (NICU) during his 3.5 months stay there. Up until now we still have playdates for the kids. It is great seeing our kids grow together.
Going back to the party, despite being a small one, I was very picky when it comes to the venue. I have several considerations and everything must be met. I wanted it to be exclusive but has a homey feel. Since most of the guest kids are below 2 years old, I want the venue to have a play area. Of course, food must be good. H has a guest list of 25 and I wanted all of us to have a chance to interact to each other while playing with the kids.
As early as September, I’ve been planning how our Christmas will be. I am more excited this year, since it will be our second born’s first Christmas. I had my Christmas shopping completed early and even planned outfits for everybody. Excitement was an understatement. I was ecstatic!
But fate has its ways of surprising you and totally taking you off course. 8 days before Christmas, our little baby was confined at the Pediatric ICU (PICU) because of broncho pneumonia; his second pneumonia confinement for the year (the other one was just last September). What we thought was just a day or two stay at the hospital turned out to be a ten day (and counting) confinement. His pneumonia is more difficult and more challenging than the previous one. And because his condition is not anywhere near good, his doctors confirmed to us that he will have to spend his very first christmas in the hospital.
Upon hearing the confirmation, I shed tears of sadness for our family. We ought to be together at home on Christmas day. With everything that our baby went thru this year, he deserves to be with his family on Christmas day, and the realization that it will not happen this year really broke my heart. To make things even more challenging for us, our baby had his two most terrifying asthma attacks on Christmas eve and Christmas day. I was beyond scared. I was shaken.
With our baby’s condition, many would ask, how can there be Christmas? As much as our situation is difficult, the whole experience humbled me. I felt that it allowed me to see the real essence of the season. Because when times are hard, all the glitz and glamour of the Yuletide season is shed. Gifts became less of a priority, grand festivities are no longer necessary. Things became simple and only the very important aspects of Christmas are left, and that is love, family, faith and most of all Jesus Christ. Christmas is not about us, it is about Him. Christmas day is all about Jesus Christ. It is a celebration of His life and what it stands for to save us. We celebrate because we honor and we love Him; despite the situation that we are in.
Despite the difficult challenge our family faced this year, yes Christmas was very much celebrated. Different, yes it is, but definitely more meaningful. I am still greatful to the Lord because we have our sons with us; we have our families; we have each other. We are still blessed.