Random Musing / life with CDH boy

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Yet again, another CDH baby gained his wings. We sobbed, we sent love to the parents and families. We were heartbroken. The baby fought so hard but while he was on ECMO, his brain bleed. 😭 Then, all started to dwindle. I am in a community of raising up CDH babies because, yup, I have a CDH son. It has become part of me, and as much as I do not prefer to talk or blog about it often, CDH has intertwined with my thoughts ever since I found out about it on 30th week pregnancy. I can't not to think about it. I face it everyday. I see it everyday. In my son's body. We deal with post-surgeries complications everyday, and at the same time, we deal with CDH complications too. But we have good days too.

Gratefulness

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I am always grateful for life but I have never been so grateful before since the arrival of Jansen. I learned that children are gifts from God, whether they have birth defect or not, they are still perfect. And not sure is it because they are special or we have been trying to be positive, children with birth defect are more likely to be jovial, and even mischievous, and smart too. Haha.

He was very happy in the photo above after his another round of internal pain. Some post-surgeries causing scar tissues, blocking food movement in intestines but surgeon would love to postpone another surgery as he thought Jansen's body had faced so many stresses already. Nevertheless, he is still a happy boy. Happiness is when he can eat, can walk and run without pain.

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In comparison to this...

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There were times we as parents were exhausted mentally and emotionally trying our best to help these little kiddos with health issues and medical needs, yet they were many times we were reminded that we are not alone, that in our weakness, we can run into the presence of God, draw strength from Him, as he says, "Come to me those who are weary and burden." "I will give you rest." Somehow one way or another, because of survival nature, we have become stronger because we learned from our kids. We view life from different perspective, yet we are still normal human who will cry and feel like giving up. But we have also learned to reach out, to rant to the group we are in, to lend our helping hands or to even share a shoulder to cry or ears for griefs. We are no longer the same. Only grow more in resilience and even learn to dance in the rain, swim on the storm, sail on big waves, and laugh when cry..

In short, it is such an irony, as well as blessings in disguise. I shall cut down on words and share some photos instead.

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Take care everyone and know that one day we will be able to sail through this pandemic and reach the shore of peace.

❤️Love from me❤️
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