Delerious. On 60. Speechless.

These are 2 late night blogs that I did not get to post for various reasons. The posting date should have originally been January 15th and then February 5th, however, here they are...

This ever evolving roller coaster with Rosemary has left me feeling incredibly fortunate to have her at my side and at the same time, ridiculous for ever complaining about anything that has gone wrong.

The next paragraph begins the initial start of this blog that was written the night of January 15th upon our last admission. I had gone into the family lounge to use the computer while Rosie was sleeping. I stopped and saved it after the nurse alerted me that Rosie had woken up and was upset that I wasn't there. So today, I am rereading it for the first time and reflecting on how quickly someone else's circumstances can make your own difficult experiences seem quite small.

January 15, 2010

I know I can play off that I'm not insane at this point. The truth of the matter is that last night after getting home from a cardiology check up that allowed us to come home, I brought back the news that we would be admitted again today because of worsening pleural effusions, again, for the 5th time...and lost it. This experience has played with my emotions and has left me exhausted and understanding that control over most things in life is simply a complete illusion.

As I stood in my closet staring at my things, wondering what to throw into my "already packed for the hospital suitcase" that sits at the foot of my bed, I just started crying. The complete disappointment that surrounds having to put your kid through yet another hospital stay and the endless rounds of IV's, xrays, sleepless nights, unknown procedures and the gammet of what it means to come back to the hospital, has got me...well, exhausted. I don't unpack anymore because I never know when I will have to come back, planned or not. I actually unpacked twice, only to have to hurry and try to pack what I could while gathering Rosie's oxygen and necessary supplies just to get her back here to the hospital safely. I came in feeling completely unprepared.

I don't even know what to say anymore. I hate pleural effusions. Period. I have been trying to keep all of my friends and family aprise to Rosie's progress. It's exhausting to hear myself speak sometimes. I'm on my own merry-go-round with dealing with these hospitalizations, trying to be the strong Mother that she needs me to be, a Mother to my other two children who miss me, THANK GOD! I just feel like an emotional drainpipe sometimes.

All of the updates, good or bad, make me feel like I'm playing with the emotions of everyone who follows Rosie's progress. We're home, we're in the hospital, we're home, we're in the hospital. I can't imagine how Rosie feels, where her little spirit has had to go and what she has had to submit herself to through all of this. She hates the hospital. I just want to rescue her, I feel so helpless most of the time. I can barely comfort her anymore.

This is where I stand. Under my invisible "Harry Potter" cloak, I'm just hiding from what is really happening to keep my nose above water here. I can't stand this. But somewhere deep in there, I know that this is giving me strength and preparing me for a greater purpose for my life, and for Rosie's life. These blogs are intended to help me vent, and to help other parents and families understand my experience with having a child with HLHS. I'm clearly frustrated. But I'm still very hopeful that this will have a happy ending. I've prayed for the tiniest angels with the biggest wings to get in there and dry up Rosie's lungs. Time will tell, and I've got to keep my patience in check. Living in the hospital is getting old, and heavy...my thighs are showing signs of hanging on to the late night carbohydrates, what we like to call "The Emergemenu" that are on hand and readily available to soothe my displeasure about this experience. And so it goes.

February 5, 2010

After reading that blog entry above and reflecting on what had gone on while I was in the hospital during that time, I have, yet again, upgraded my mental luck-ometer knowing what I have with Rosie. I have today.

On that very day, January 15, 2010, a Mother who had been across the hall from us in the CICU had just lost her baby back in Mississippi to his battle with aortic stenosis. I had met her while she was here at Children's in DC awaiting a heart transplant for her newborn son. I had no idea because we had just gotten back in the hospital and I hadn't checked my Facebook updates in weeks. When I learned of it and reread the pevious post, I felt like I had so much more to learn andto be humbled by. Just two days later, another friend of mine here at the hospital lost her 10 month old son who was battling complications of Down's Syndrome and HLHS.

There is no way to describe the gravity of that place. I have the deepest respect for the mothers, fathers and families of children who have passed. Their hearts and souls have had to go to a place that every human being fears. It's not right, it's not fair. Somewhere out there, is a reason for all of it.

I look back on how upset and frustrated I was then, and still am in many ways. Upon finding out about these 2 babies, I felt ridiculous for ever being frustrated over Rosie's complications.

The reason that I decided to post and add to this blog is to try to further express how quickly circumstances can change your emotions, even when you think you have it all figured out. Everything is relative. Everytime I say I'm thankful that we're not in the CICU, that I know things could be worse and I feel ridiculous for being upset, so many people remind me that it is okay to be upset with where we are because it is hard. Rosemary has been here since October 2, 2009, with little time at home. I'm tired of this for her. I just want her to feel good again and regain her quality of life.

I'm just left speechless tonight. Thankful, and speechless.