I cannot lie...

I cannot lie. I am tired! I am tired beyond belief, a kind of tired that a 3 or 4 hour nap does not erase. A kind of tiredness that several naps do not erase. I can feel it every part of my being. A tiredness that comes from months in the nicu, rsv, ohs, reflux and feeding issues. It's funny.. when I read others post I don't get that feeling of tiredness from other moms. I am starting to think.. is this just me or is everyone coping better than I am? Or is it just a phase that I am in? Or is it the first year that is the hardest? I wonder, what is the secret to managing everything? When I read others post's I am always amazed at peoples energy, and ability to go to the zoo, or shopping or to a friends house...we are so not there yet. I wonder if others just post about the positives or is it that they have adjusted and are just...positive.:)

I feel that I have so much too do and so little time to do it in. We go to 4 hospitals for Wysdom's care each focusing on different elements of his care. So it is not uncommon for us to have a week where we are at 2 or more hospitals. For example, today we met with our pediatrician at one hospital in town and tomorrow we are going out of town to another appointment at a different hospital. On Monday we go to see his cardiologist..at yet another hospital.

I think one of the things lately that is contributing to all my exhaustion is dealing with all of the professional who all have a different spin on things and have their own ideas on what needs to be done. I must say that I have a new meaning and appreciation of the word "advocate". We spent the majority of this week and last week trying to advocate on Wysdom's behalf with our pediatrician to get a simple referral. This process included many phone calls to her office, sending information about the clinic that we would like to go to, calling back and forth several times. And guess what..still no referral. It is something that we are going to have to fight a little harder for and this all takes time! Then we have a feeding team that comes weekly to see how he is progressing. They want to know how much he eats? What he eats? However they are not so free with their suggestions on how to get him to eat or what techniques might be useful for him. So instead I research oral motor development on my own and talk to other mom's who have feeding issues in attempt to get some information.

I know I have heard that the first year is the hardest, but I am beginning to wonder if it settles down. Don't get me wrong. I love Wysdom with all of my heart but most of my time seems to be eaten up by appointments and feeding not to mention the complexities of his reflux. Some days I just would rather lay in bed and cuddle with him or watch him smile instead of all the hustle and bustle, but our schedule just doesn't allow for much of that. Other days I would just rather ...sleep!!

Siblings...and dealing with it all

This is Wysdom's big sister Blyss. Today Blyss and I had a good day together. We went to the park to visit some animals in a petting area, then off to a splash pad, followed by swimming lessons. It has been a really tough adjustment for her with Wysdom's arrival. Not so much that she didn't want a brother or anything like that. It is just that as a family we have gone through a lot. She has had to be put on the back burner at times, when Wysdom's medical issues take precedent. We have also had to limit visitors into our home to prevent Wysdom from getting sick. We have been home more often than we previously were. So it has been a difficult year for her in some respects. So today was really a spur of the moment "mommy and Blyss day"

Blyss really loves her brother and is very protective of him. He loves her too. You can just watch the intensity in his gaze as he watches her move around him. He looks like he just can't wait to grab hold of her and squeeze her. We are truly blessed to have Wysdom and also to have such a wonderful big sister. Through all of this medical stuff...we are sure that she is going to be a doctor. She checks his heart with the stethoscope, says "let's give him the domperidone"(his reflux meds) and constantly warns others about his ng tube. Julian and I have tried to shield her from most of the hospital stuff as much as possible....but she hears things and picks it up. She loves the Ronald McDonald House where we have stayed twice for each of Wysdom's hospital visits. What I do know is that she will love and protect Wysdom like no other! He is lucky to have her and she is lucky to have him. Ah the love of a Sibling!!

I would be curious to see how other siblings handle life with medical issues and mega appointments ? Are there any special things that you do for them?