My son has spina bifida and I found the best way to cope was to be in control, organised and well prepared every step of the way. These recommendations are based on my own personal experiences and may vary for you depending on your baby’s disability. It may seem overwhelming going though everything all at once, but remember this is just to give you a heads up on a few things that I found incredibly helpful. If you are a control freak like myself and the unknown scares the pants off you then this is right up your ally.

The hospital stay

Being in the hospital takes a bit of adjustment especially if you were expecting to have your own room during your stay. The reality is it is just simply not feasible for every family to have their own personal room even if you were promised one beforehand, so prepare yourself for the worst case scenario to avoid any embarrassing tantrums as post pregnancy hormones will still be lurking around in your system. You may think you are more deserving of needing your personal space than anyone else in line, but you will soon see how fortunate you are to not be going through some of the things other families are having to deal with and if they are soldiering along in a bay on the ward then you’ll be just fine too.

Document Document Document

Keep a notebook handy for monitoring feeding times and any vital information which the doctors practically mubble  in their 2.5 seconds morning rounds, ok its a bit longer than that but it really does just fly over your head if you do not jot it down. You will also need a ring binder with a heep of empty sleeves all ready to fill with your lovely bundle of joy’s hospital admissions and discharge papers (especially if you are coming in and out quite frequently), operation consent forms and generally anything that involves your baby’s medical care. Section the file in categories to make it dummy proof for whoever needs to view it, although for me the dummying it down was for my own benefit if I’m honest.

  1. Hospital Stay – consent forms, admission/discharge forms …etc
  2. Appointments- you will soon have many follow up appointments.
  3. Medical reports- different consultant reports relating to your baby’s condition with updates or any changes.

Always request a medical report

After evey meeting with any medical professional who has an obligation of care for your baby mke sure you remind them that you will be expecting a report through the post, as those reports will come very handy in future. Don’t expect them to always remember, so be prepared to chase it up.

Get clued on

You are not expected to be an expert on your child’s condition and to be honest not all doctors are either so don’t be too harsh on yourself for not knowing everything. All you have to do is read enough or ask enough to gain a firm understanding of their needs so you don’t constantly feel overwhelmed and clueless throughout their development. When doctors see you’re eager and on the ball belive it or not it changes their method of delivery when dealing with you and they tend to not forget to post those medical reports just to get you off their backs.

Remap

My son is paralysed from the waist down, so he does not crawl and will not walk. The fact that he is still a baby makes it more of a hidden disability really, as nobody expects him to walk right now, so people who meet him would never know unless I told them. Now that he has reached the crawling stage I wanted him to still experience exploring independently, so I got in touch with a charity called Remap which consists of a group of retired engineers that design and manufacture disability equipment that is not available in the current market. With the help of my son’s amazing physio therapist and occupational therapist we got the ball rolling and soon he’ll be whizzing around in a mini mini mini wheelchair which I helped design! I think this is such an amazing charity and there are many more like it catering for different disabilities depending on your child’s needs. Explore all the opportunities out there to enhance your child’s life so that they grow up to be confident and a  part of society rather than sitting on the side lines looking in. You will be presently surprised what an email or a short phone call could lead to, after all that’s how I got on this amazing and inspiring magazine.

You know your child best

The medical professionals do an excellent job and we all highly appreciate their efforts. However you live day in and day out with your child and have built an understanding of their behaviour so be confident in expressing your concerns at any given time because when it comes to your precious one you are as much of an expert as anyone else. Their abilities and strengths are what you witness on a daily basis and that 20 minute appointment with their doctor may not quite capture that, so never shy away from pushing through your thoughts, suggestions and concerns on what you think is best for your child.

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