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Some will have gotten the diagnosis at birth, with confusion setting in while still in the delivery room. Others will come into the HIE world after their little one suffers oxygen deprivation through a medical issue, a near SIDS event or an accident.
The first days after your child’s diagnosis will likely be spent in a hospital, crouched over your little one’s bed with tubes, wires and beeping machines. Doctors and specialists will use terms you have likely never heard, and some may give you news you don’t want to hear.
Eventually, the moment you’ve dreamed of comes around. You can go home – where suddenly you wish you had the comfort of the nurses, machines and monitors back again.
Those first few days and weeks can be incredibly tough. You may feel alone and have so many questions that you don’t know how to answer. What do the MRI or other test results mean? How do I deal with feeding difficulties? What does this medication do and why does my child need it? How do I use the medical equipment the hospital sent us home with?
And then there is the nagging question we all ask: what is the future for my little one and my family?
No matter what prognosis your child has been given, the only real answer is that you will have to wait and see. And that is the hardest part. As the months stretch on, you will closely watch your child for milestones. When they meet them, you will cheer! When they don’t, you will worry.
You will be stressed, sleep-deprived and unsure, but in a way most parents would never understand. You must remember to care for yourself – watching for signs of depression or PTSD.
Through all the trauma, try everyday to enjoy your little one. There may be struggles and uncertainty, but that little baby or child is still your precious little one. Take pictures, play, snuggle and give lots of kisses and hugs – which are therapeutic on their own.
Eventually, your life will find a routine. Therapies will become manageable. Your schedule with doctors, specialists and therapists will even out. And you will make it!
And never, ever forget that so many have been there before you. They can provide knowledge, support and an understanding ear. Don’t hesitate to reach out.
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