Friday 25 March 2016

The ups and downs of being L's mother

So im going to be very honest in this post. It really hasnt been easy being Levi's mother since his birth. There has been too many ups and downs, disappointments, time wasted, patience drying up, elated moments, feelings of hopelessness and exhaustion.

Being a 35weeker and a boarder line prem, i thought he wouldn't have any problems. The day i found out he has a slight birth defect (he cant pass motion on his own), my world crumbled. I questioned God n everyone around me. Why me? Why us? Why my sweet sweet boy? But the doctors and nurses at sgh were always reassuring that that is a cure. And for now we just have to help him get his poo out until he sees a surgeon and is scheduled for a surgery to correct it. There is a cure for this birth defect and its fair more common than we thought. Then his eye came up too. It was another slap in my face. Again? Another defect? Why??? Isnt one problem enough for him to handle?

I tried so hard to soldier on and stay strong for my boy. It was until his first washout that sean and i witnessed that sean was vulnerable and broken for his son. He saw his son suffering and it broke his heart. For me i was totally fine. Maybe because i myself have to cathetar myself several times a day, im used to seeing such things and as long as this is helping him, its ok.

It was always a waiting game when it came to Levi's 2 defects. His eye we were told by the eyelid specialist we had to wait till hes older and see what happens. With his rectum we had to wait till he was a good weight before a surgery could be done.

He finally hit 4 plus kgs n was given the green light to do a psarp surgery. Basically to shift his anus down and to make it bigger. Also to test if his intestines showed movement and a biopsy to rule out hirschsprung. 

I was so hopeful the surgery would cure him. But of course i was anxious too when they carried my fragile tiny baby away from me into the operating theatre.

Post surgery again we had to wait. And then abt more than 12hours post surgery Levi stopped breathing and had to be resuscitated. If he didnt recover on his own we could have lost him. At that moment when we received the call from the hospital sean and i were pretty calm. But thinking back yes my son could have died if he didnt have the strong will to live.

It was another waiting game cause he needed to fast for another 7days so to not poop n aggravate the wound. Once he started milk i wws hopeful that yes he will finally poo. We waited and waited. Nothing. Well just small stains not sufficient enough and he was getting too bloated. So back to washouts.

I was frustrated and losing my patience. I hated the sight of the hospital and making trips to the hospital everyday. I just wanted him home.

Finally he was given the green light to go home after 17 horrible long days. But still no spontaneous poo on his own. Whatever as long as my baby is home.

A few days later he managed to do 4 spontaneous poo on his own. I was soooo happy i snapped pictures and sent to family. I felt hopeful again. But then after 4 poops, nothing again.

Its been 2wks n nothing. Stains here n there but nothing as significant to celebrate about. So what now? What happens now? Do we really hav to keep waiting?

I hate that no actual diagnosis is given because his biopsy results are inconclusive. But the frustrating part is i have no clue what is going to happen next. Everyone keeps asking me and its honesty so hard to keep a straight face n say anything cause i just get so touchy and emotional that his surgery may not have worked.

So many friends and family always commend me for my bravery and being a mother of 2 at 23years old and 1 child having so many adversities. But really most days im hating the world n feeling bitter and resentful towards God for making my son like this. Now dont go preaching to me that i need to pray and trust in God. Cause thats wat ive been doing but apparently God must hate me or something. Ive heard this too many times "God doesnt give you more than you can handle." well he clearly forgot that im a mother now and im vulnerable and super weak when it comes to my kids. Well every mother is.

So yea my faith is indeed shaken now. Cause why of all the billions of people in this world why pick me to have 2 premature kids and i had to go through tough hospital journeys with?!

I know Levi's medical problems arent terminal and neither are they super major like those other terminally ill kids. But im sure every parent who has a not so well kid will blame God and question the why me why my child.

How fitting i chose to share this during Easter. I know im not a super devoted and faithful christian who prays everyday or go church every week. But ive never done any seriously bad horrible things for bad things to happen to my kids. So yea i feel its pretty unfair. How do I trust in a God that has somehow forsaken my child?

Im exhausted and frustrated. But i still need to find some where in me to stay strong for my child. Cause clearly he has a dam strong fighting spirit. Way stronger than me. Its so heartbreaking to hear your child scream in pain and face turns all red and voice goes hoarse every time i dilate him (insert a metal rod into his anus) twice a day. But he has truly showed me what a brave boy he is cause even though he goes through this crap twice a day, he still always smile and babbles happily after we are done with his dilation. He is indeed a great little baby.

I just need a miracle or a sign that things will only get better....