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herriblog · 1 year ago

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The clock struck 12am. As i heard the grab rider leaving the ordered item on the house gate. I came out to collect the chocolate cake and cheese cake (coffeebean). I placed the candle on the chocolate cake as he loves chocolate cake (i couldnt get chocolate indulgence cake as secret recipe was closed). I went to the room to surprise him. As i walked into the room, i could feel my late brother in law with me as i surprised him with the cake. Minder was surprised that he received a cake like this. The last time we had celebrated his birthday was in BSS with me and Metay (when it was after midnight). I remember seeing him smile and being all bashful. I wanted him to remember all the good things despite the issues that we had been facing the past few months. Thankful i had recorded his expressions bcus what would happen in the morning changed our lives entirely.

It was about 10/11-ish when i received the most dreaded phone call from the Paediatrician from SGH. She told me that there was some abnormality found in Mannat’s blood test (our second born who was 7 days old) and that she does not know what was abnormal. She informed me that the immunology nurse from KKH will call me. I took her words literally like she doesn’t know. But tbh, how can a healthcare professional not know what abnormality it was and calling the parent to say about the test had abnormality but do not know what it was.

After i hung up the call, I called out to Minder to share it with him. I held my chest n told him the news. I said that I was scared. He reassured me and said maybe its nothing serious and not to overthink. But a post partum brain overthinks alot. The phone rang again and it was the KKH nurse. After probing more, she shared the results from the newborn metabolic screen. It stated that the Severe Compromised Immunodeficiency Disease was out of range and he had to come to KKH to repeat the test the next day. We agreed to come over the next day at 8:30am.

Meanwhile the entire afternoon, i was googling about his condition and crying. Minder was being very optimistic and said, “dont worry. Maybe its a false reading. Or maybe his immunity hasn’t kicked in and when they repeat it, it will be normal.” I cried, “ i hope that’s the case.”

I texted my work best friend who also googled and helped me ask her oncology friends about what is it about etc. she informed me that Mannat has no immunity and required bone marrow transplant to get his immunity. Transplant can happen if either parents, or siblings is a match or they will take it from the cord blood (which we didnt store, so we have to take it from someone else else). She also told me that Mannat has to be in isolation for months to a year. I was horrified. I told Minder about it. He didn’t want to look or sound panic. He just said it’s ok. Dont cry. I couldnt stop crying. Did I cause my son to inherit this gene from me? Is it my fault? Till date, this thoughts still linger in my mind. At one point, Minder came out of the toilet sharing more information about this condition to me. He told me not to worry. And that treatment is a success if Mannat doesn’t catch any infection. Hearing that made me feel better but to think that Mannat has to undergo so many blood tests and the poking, the line insertion. Waheguru. I cried again. I started to have these thoughts, why did i wanted a second child? I should have been happy with Akaal. Why am I subjecting him to all this pain? It’s all my fault. Will Minder hate me for giving Mannat this? What if he starts to despise me just like the Savour365 tiktok video. (It was an article about a young mom who has a sickly child and left her job to look after the child. After few years later, the child got very sick and had to be hospitalised. The husband started to get distant. The wife kept overeating due to stress. When the wife wanted intimacy from the husband, he refused to hold her hand, touch her or even kiss her. He then shared that he despised her and think that she couldnt even do a good job in looking after her son (even though she was a SAHM). He blamed her for it)). I was so scared that this will happen. Minder and I have been distant since the last trimester. He did share his concerns with me. And i agree that i have not been the best partner, not best in listening. I have always reacted when he made a statement. So he feels like it is best not to share with me. But lately, we have been a little better than before. Even though, he feels that i will always scold him or make comments. For instance, helping me change my spectacle frame, he said dont scold me if u don’t like it. I said i wont scold. I just need a new frame cus my glasses is falling off. He constantly said that twice to thrice which hurt me. Tbh, i couldnt care if the glasses was nice or pretty. My vision to look after my son was more important. He got the glasses and i held myself from making any comment that i used to make easily. I was giddy from the new glasses cus i need time to get used to it. So i dealt with it on my own bcus if i made the comment, he would respond with ‘i told you already. U wont like it. See lah.’ Frankly I am thankful that he got the glasses and they wont fall off so easily when i change Mannat’s pampers.

Married life is hard. It is not a bed of roses everyday. Intimacy doesn’t always been sexually or lovey dovey. It can be getting your spouse the spectacles that she needed, managing your other children while she manage the other one (i understand that i dont say it often but i do appreciate him looking after Akaal. But i get frustrated cus i am the only one managing the lil one the whole day with no breaks). This is a test of our patience, marriage, love. But it will be for the better.

To infinity and beyond.

#Relationship #SCIDbaby #parentoftwo #strugglesofmarriage

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