There are lots of things in life that we all take for granted at one time or another until you meet reality square in the face and have no choice but face the challenges that life can bring.
October 1st 2010 was the best day of my life and the scariest. We welcomed our first child Addison Marie Halloran into the world but then watched her be worked on and be taken away from us not knowing what was wrong and we didn`t know for many days to come.
I will say it was all a big blur and I had no idea at that point in time what this meant for our future. Probably at this point in time I still only have a small idea of what our future holds but I definitely know it isn`t going to be easy. Is it worth it? Of course it is. I wouldn't trade Addison for anything in the world. Do I wish she could do the things her peers do, well of course I do I am human!
Well as the title of my post states I am going to discuss why I haven't had a chance to update the blog.
When you have a child with special needs like Addison a day in our life does not resemble the day of a typical child of her age.
What do you do when you wake up?
I guess you cuddle a few minutes...or maybe not they might run right for the toys. You make breakfast, feed them, do dishes, make beds, get ready for the day etc. All the while your child is playing, watching tv, or at your feet driving you crazy.
What do we do when we wake up?
Well there is never a fear of Addison still being asleep. We then pick her up, take off her tube, put her in our bed, turn the IPad on one of her videos and pray she will watch it for a bit so we can lay there and just close our eyes(as the night before definitely was one of no sleep we get 5 hours broken up on average). However, we have to judge Addison's mood on how long we actually get to lay there and relax because this may be the only time for awhile that we can get anything done...feed ready, medications mixed and drawn up, any tidying...etc...oh and maybe eat and have a shower. Now when we are both home this is easier because one person can do the work the other can watch Addison but as you know we are building a house and Tyler has been working every weekend so I am alone.
During the day.....
I guess your children play, play and play some more. They probably whine when they get bored, or they want to do something you don't want to do or they are too young to do. They probably get cranky when they are tired, they probably talk to you, want you to play with them, bug you when you are doing house work, or even just want to sit on your lap and read a book.
What we do during the day?
Feeding, Meds, Peg to start the day.
Stander for a minimum of 1 hour
Time in wheel chair
Physio
Tummy Time
Sitting time
Oral Therapy twice a day minimum
Light box time
Read to her
Sing to her
Time with her spotlight lamp
Sure that sounds like a busy day which it is but what makes it hard is that Addison is not always in a good mood. This stuff all is worked around the fussy periods which seem to be more and more common.
We spend a lot of the day rocking, bouncing, and trying to get Addison to be happy. Now I don`t want to make it out that she is miserable all the time so people judge her but she has her moments. She has a lot going on and we don`t always know the cause of the problems.
In the evening(which are worse when I am alone)
I can bath Addison, read to her, get her all ready for bed but guess what that means....ABSOLUTELY NOTHING. She doesn`t go to bed at any particular time. This week it hasn`t been before 10 pm. So a positive is I get to spend lots of time with her after being at work all day but a down side is I get nothing done because by 6-7 pm she is tired like most kids and cranky and ready for bed.
She will go in her crib and suck on her soother for so long then gets bored and arches really bad so we have to take her out, or sometimes she isn`t happy unless he is held and being bounced.
I literally can`t go pee, or do a darn thing without her crying or worrying that she is arching or having a seizure in her crib. I get no time to myself. You know how we all have those days when you would just like to sit down and relax for a few minutes alone.....Most nights I am in bed and eventually just fall asleep with her in her crib awake. Sometimes it is too late and we will put her in bed with us so at least if she gets in a weird position or has a seizure we will know.
So right now it is 8:00 Addison has been cranky since 6. She is in her crib, I have music on for her, she is bored and arching all over the place, making cooing noises now and then, but at least she isn`t crying. I am standing in the room with her typing this because if I don`t do it when she`s awake I never will. She will probably fall asleep but it will only be for 30-60 minutes and then she will be up for an unknown length of time.
I worry about what September will bring when I have an actual newborn and then Addison who requires sometimes more care then a newborn. I know somehow I will survive and it will all be worth it but I am aware that hard days are ahead.
I guess I had to write this blog post because it is my way of venting without getting into a fight with people on facebook who do nothing but complain about everything and anything.
I just would like them to live one day in our life and maybe they would have something to complain about. Like why did you have kids if you couldn`t handle it....If we are managing with smiles on our faces and love in our hearts...why can`t you?
Yes we all need to complain at some point and time and before Addison came along maybe I would have been the same. But now that I have a total different perspective on the word "hard" I am more cautious about what I say. This is why I am writing this here and not on facebook..I don't want people to feel bad for me or to worry about complaining to me. My real friends know that they can say whatever they need to to me as sure they do have bad days too. Just had to get it off my chest.
Just remember next time you have a moment to yourself to cherish it in every way because it isn't always possible for everyone.
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