Thursday, August 20, 2009

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!!

14 comments:

Adrienne said...

Sasha, you're a wonderful mommy to Wysdom and you're doing a great job with all of his appointments and feeding issues! Hang in there, it will get better!

Stephanie said...

Oh sweetheart, we're not any better at it than you are. It's just that some of us have been at it a little longer and we've had more time to learn how to FAKE IT!

Keep up the good work.. God Bless.

Laurie said...

Well Sasha, you have read my mind. We just got back from 2 appointments and as I was driving home, I was thinking of how I can write about it all in my blog. It really, truly, is just simply exhausting sometimes. There are certainly moments in my day where I wish that we could just "be" instead of what we are...does that make sense? And like you said, it does not mean that we dont love our little ones to bits, it's just not an easy road sometimes...
Anyhow - you are NOT alone. ((Hugs))

Stevenson Family said...

Sasha,
Keep your head up. You are doing awesome and you are a wonderful mother to Wisdom. It just gets really depressing at times having to deal with all the medical stuff. I still am so amazed that you got to bring little Wisdom home with the NG tube and reflux issues. That is why we had to get the fundoplication and G tube in before they would even consider sending us home. Keep your head up and in a couple years we will look back at these crazy times and wonder how we managed to make it through all of this.

Tausha said...

Sasha,
You have alot to deal with, at least more then we have. Sam has been pretty healthy so we haven't had to run around like you have and I am still tired all the time. In fact, Sam and I are home sick today. Sometimes I wonder if I will ever catch up on sleep. My husband really helps out alot so that has been my saving grace lately. Keep it up, your doing a great job and don't worry about posting that our tired, your not alone.

Stephanie said...

You've been through a lot dear and you have every right to be tired. I think it actually gets easier over time. I've been lucky with my Yusef, before he started having seizures, he basically has had no real health problems except reflux. I do however have a little girl with Turner's syndrome, recovering from cancer, heart surgery and some other smaller stuff. Now when some new problem arises I do my best to count my blessings. I have to admit sometimes it does get to me, so know that you're not alone.

Beverly said...

You are doing great! i would be tired too if we were going through all that. It will get easier. I get tired too but I guess it is my normal now. I will keep you in our prayers that you can get some good rest and feel refreshed! thinking of you!

sasha said...

Thank you so much for your comments. I just came home from a long appointment with the eye clinic. It was so nice to read all of your encouragements and support. It made me feel much better to know that I can express how I truly feel and have you there for me:) Also to know that I am not the only one who is going through this

Hector and Jennifer Varanini Sanchez said...

It will get better. The first year is so crazy! Being a parent is an endless job but thankfully the smiles we get from our kids keep us going. Hang in there!!!

Adrienne said...

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 corinthians 4:16-

Evelyn Parham said...
This comment has been removed by the author.
Evelyn Parham said...

A big hug for you Sasha!! I know it all must be overwhelming, but know that it will get easier. Just keep the faith and keep hanging in there.

Sometimes it is hard for me to focus on the positive, but when I think about all the things our children will have to deal with, then I can't help, but try to stay positive. It isn't easy for me to always be positive, because sometimes, I have my moments.

Big Hugs and blessings,

Evelyn

Brandie said...

I think you have every right to be tired! I know we have scheduled therapy breaks before. A week with no appointments, but that is harder to do when you are dealing with medical appointments, hospitals and dr's schedules. You're doing a great job, hang in there :)

Googsmom said...

Yes, it does slow down. The first year w/ Brooker was a wirlwind of docs and specialists. Now days, unless something comes up like a cold, we see the doc once a year. Hang in their kiddo, there is a light at the end of the tunnel.
Jennifer