Ashe Background

Ashe Background

Tuesday, June 04, 2013

Thoughts, realizations & confessions

   While Eli was in the hospital, I was able to get some reading in during his nap times and late at night when sleep was nowhere to be found.  I read The Art of Hearing Heartbeats by Jan-Phillip Sendker.  I really enjoyed it! It was a great read, a little unrealistic, but still a nice thought.  My favorite quotes were, Life is a gift of riddles in which suffering and happiness are inextricably intertwined. Any attempt to have one without the other was simply bound to fail....and...It would be much worse to expect good from other people, only to be dissapointed when they didn't measure up to our high expectations. That would lead to resentment and contempt for humanity.

   Having a baby is life altering.  I think that is common knowledge and people pretty much know that life is going to change, but some just don't know how drastic. I remember answering that same old question "When are you going to have kids?" with the most typical answer, "When we are financially stable"  I pretty much laugh at that answer now. While it is a very legitimate answer and one that should be taken seriously, it isn't what I would think high on the list.  Knowing what I know now I would change my answer to, "When we're emotionally, physically and mentally ready!"  Being financially ready is important, but I think being physically able to function on no sleep, emotionally ready to endure hospital visits and mentally ready to accept that one of the many balls you are throwing in the air may just fall ranks higher on my list.  Money is important, but health; mental or physical is essential.

   While on the topic of having a baby, I think that every baby should come from the hospital with unlimited prescriptions of ear infection antibiotics, pink eye drops and albuterol.  I can't believe how much I have used these items over and over again these past 7 years and always seem to need them in the middle of the night.  I know its a long shot, but in my perfect world these would handed out with every baby. Who am I kidding?! In my perfect world every kid would also come with a maid and a chef!

   All of my children, except Lexie are cuddlers while awake. However, when they are ready to sleep they prefer not to be touched.  From birth they have been placed in the crib while awake and have soothed themselves to sleep. With Ethan I made the mistake of pushing the whole rocking him to sleep method and boy would he fight me. I thought that was just how you put babies to sleep, but quickly realized not all babies like to be rocked . Gracie, Lexie, and Eli are exactly the same way.  However, whenever Lexie gets sick, she needs to cuddled. That seems to be the only way to console her when she's crying or recovering from a seizure. I learned at the last hospital visit that Eli is completely opposite.  He doesn't want to be touched and will complain until he's placed back in the crib.  Even the nurses would comment on how he was like a grumpy old man and preferred to be left alone.  It is crazy because when Eli isn't sick he is very pleasant and would be perfectly content being held all day.

     You know you are in our house when you happen to walk by the sink and there is a handful of syringes in the sink.  I always ask for more whenever I get the prescriptions refilled because they are in constant use around our house, but it never seems like we have enough.  I wonder if I just need to find an online company that sells them in bulk. I'm sure I would find a couple in the yard if I were to look hard enough. Darn kids....

    I love how I get to use a social network like Facebook to connect with family and friends on a daily basis.  However, I often wonder if I shouldn't post half of the stuff that I do.  Please don't assume that there are any inappropriate post or language, just that I wonder if people get tired of being so well educated about our life with two special needs kids.  I'm pretty sure I didn't realize when we had Lexie how it would be life changing for people outside our immediate family as well.  Our family and friends have involuntary become associated with hydrocephalus or it's effects on a daily or weekly basis.  It doesn't affect their daily life, but I'm sure it may become tiring to constantly see the post describing the hurdles we face or the things that our children have already had to endure at such a young age. Don't get me wrong, I post all the great times as well, but this past year has been a trying one and sometimes the bad times just may overshadow the good.  I'm all for hydrocephalus awareness, but a little part of me just wonders if I could've spared some of our family and friends.  Let them continue to to live in a world where unless there is drug abuse or some sort of medical malpractice, babies are just born healthy.  It's naive and I agree not helpful, but I'm not going to lie when I say I miss that world.  I've been thinking I should just start a private group with immediate family members where I would post ER visits, hospital stays, and/or major events.  It just seems less imposing on everyone else.

However, I don't view this blog as imposing because you came here to get a peek into our lives at this moment.  Therefore, I'm going to give you a peek into our daily schedule. I choose this day because Eli was in the hospital and it pretty much described how chaotic our day can get when we have a little one in the hospital.

4:45 AM Wake up at the hospital, brief the nurses on the feeding schedule and when Eric will be getting there.
5:00 AM Leave hospital
5:45 AM Arrive home, take a shower and get ready, feed kids breakfast, pack lunches, and start the laundry
9:00 AM Drop Ethan off at school and the girls and I immediately leave for the hospital.
10:00 AM Arrive at the hospital.. I feed Eli and Lexie while Gracie eats her lunch.
12:00 AM Leave hospital to get Gracie to school on time.
1:00 PM Drop Gracie off at school
1:30 PM Arrive home. Put Lexie down for a nap and I continue the laundry game while eating my lunch.
3:50 PM Pick Ethan and Gracie up from school.
4:00 PM Meet up with Eric for the old switcheroo of children.
5:00 PM I'm back at the hospital and my day ends here until the next morning when it all begins again.

Thankfully though on the next day there will be no laundry to do!


Maggie said...

I never tire of hearing about you and your family... The good, the bad, the happy, the sad. You are real and so is this blog!

kayla brown said...

I am so grateful for you keeping us in the loop on the good and bad that goes on with your sweet family! Whether it's by a vent-full text or a status update, and I appreciate the awareness you encourage in all of us! I may not know firsthand of the struggles of a Hdryo baby but I do know the struggles of motherhood and the struggles of a child with who has a different sense of "normal"... Keep posting and if people wanna be naive, they can skip right over it, but the rest of us will continue to support you in any way possible!