Sunday, February 24, 2013

parental quickfire snipping

The world wide web has brought the entire world to our finger tips in relativity a short amount of time. While various social media platforms reconnect us to long lost friends, we all spend far more time alone then is healthy. With our physical social separation, we as humans start forgetting about the finer art of proper social etiquette. With that goes our language and communication skills. 

People type responses to each other, never stopping to re-read or edit a thought or idea. Sometimes these quick responses come across as highly rude and heartless. Nine times out of a ten it could be a completely innocent mistake. One person's meaning is completely misinterpreted. I have seen this happen in emails and in social media situations.

In one area I see the most snipping and anger is when it comes to do with anything about parenting of children. Often a stray comment or suggestion gets completely blown out of proportion. Misunderstandings seems to come fast and hard. With miles between us parents now, we can't see what others do on a day to day basis. Instead many parents throw a protective cover over themselves when a friend says something. Never once batting an eyelash about what that other parent might have to encounter on a daily basis. Feelings get hurt and emotions run high.

Let me break down a barrier for you about my daily life. This is not to ask for pity mind you but to open your eyes to things most parents never have to deal with. Over the last nine years (where has the time gone?) I have had to learn many new things in quick succession.

My oldest was born on leap day of 2004, she was only five pounds and had severe jaundice. That night after her birth the nurses collected my newborn from me to help me rest. As I tried to rest, the nurses on duty noticed that my baby was breathing quite a bit faster then a normal infant should. All that next day doctors and nurses didn't say much but would delay my being sent home.

At some point the doctors decided my child needed to be taken for observation in the intensive care unit. This is the point where you start getting very scared as a parent because no one is answering your questions. After way too many x-rays and many medications (that in hindsight did not need to be administered) our daughter was diagnosed with holes in her heart. At just fifteen days old my newborn had open heart surgery. That first month of life was spent in the hospital. It was a stressful time, and an overly surreal time.

Now jump to nine years later and my daughter's heart is fine. However she has global delays in all areas. She cannot talk. She cannot walk.

Anytime we leave the house for the day or go on vacation a wheelchair or giant stroller must accompany us. When was the last time you tried to lug around a 54 pound human?
Because my oldest is in a wheelchair and doesn't walk around on her own, she also doesn't have use of her bowels like you and I do.
Every time I leave the house for over an hour and a half I have to make sure that I have some diapers with me, along with wipes. You cannot simply walk into a drugstore and pick up a pack. Oh, no these have to be specially ordered.

You and I have the pleasure of being about to chew our food without fear of choking every time we swallow. Plus we have the added advantage of drinking whatever liquid we choose. My daughter hasn't quite gotten the hang of chewing every piece of food so that means I still heavily rely on pureed baby foods and cereals to keep her going. (thank god we don't have a feeding tube!)
There is another issue we do have deal with when it comes to her drinking.She can aspirate, which means that a small amount of liquid could get into her lungs as she is swallowing a drink. This action could be so minuscule that it might not register with anyone that it is happening. If it were to happen though , then there is a chance that that liquid could help cause an infection in her lungs. Which means that everything I pour into a cup for my eldest must be thickened with a special powder that physically makes a liquid less runny. The powder its self is odorless and tasteless. (another thing you can't just walk into a store and buy)

What happens when I have to soothe my child? How do I deal with her howling uncontrollably when I have no idea what's wrong? She can't  talk to me and tell me what is wrong, so other then a physical inspection of her body I hand her one of these:
This simple baby toy often calms her down. She can chew on it, shake it and throw it. (watch out, she has a great arm!) We have so many of these lying around the house! At bedtime she'll often lie in bed chewing on her ring to relax. During the day if she is chewing on one of these or just plain licking her shoulder (a sensory thing) then my oldest can rapidly run through a collection of shirts. If we go out for a day trip or an extended trip then we have to pack extra shirts with this in mind.

What about bed time? There is the issue of falling out of bed. For a short bit we had a day bed turned around against the wall creating a large crib if you will. This worked great and made it impossible for for her to fall out. However with each extra pound of growth it became more difficult to get her in and out of it safely. My husband and I have to preserve what we have left of our backs. Now there is a mattress on the floor with tons of pillows around it. Trust me , this works great. There have been a few occasions where we've been awoken in the middle of the night to find our daughter scooting around in the hallway. Which means we have a baby gate across the top of our stairs so that no one will fall down it.

Then there is the whole issue of breathing while she is sleeping.
This lovely contraption is a b-pap machine. It helps my daughter take deeper breaths as she is slumbering. And yes, if we have an over night trip we're going on this machine gets to come too. (Airport security is such a blast for my family!)

This is but a tiny glimpse of all the stuff I have to do on a daily basis. So, the next time someone gives you advice (that you probably asked a question about), stop and think a moment before you reply. They most likely are speaking from past experience and have found an easier way to do something. Don't automatically discount what they are saying. I have found this happening to myself a lot over the years, especially with people who only have one child versus my three. While what they are saying might not hold exactly true for you, it might have some bearing to the answering you are seeking.

Be kind to your fellow parents and friends. Don't bite their head off accidentally when replying to a thread of conversation.

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