Nov 27, 2012

Our Next Leg - Week 24

<p>&lt;p&gt;&amp;lt;p&amp;gt;So today, the 27th day of November I woke up and knew that it was time for me to do something that I'd been avoiding since knowing in the wee morning hours of May 14th that Dylan would call a hospital her home for the foreseeable future. It was time for me to clean up the room we shared in my mother's house and take the first step in preparing for a life with her at home with me.&lt;/p&gt;<br>
&lt;p&gt;For the past 24 weeks I've kept my comments about the hospital Dylan is currently in to a minimum in this blog and that was done purposefully. I'm satisfied with her current care at Blythedale, but like any parent would feel, no one else is going to take care of your child the way you do. Period. So when faced with the situation I'm in where my child is under the 24 hour care of complete strangers and I'm the kind of parent that was extremely hands on - without smothering - I'm usually left at my wits end when it comes to voicing grievances, expressing concern and simply dealing with the day-to-day reality of the situation. So like the saying goes, if you don't have anything good to say....Over the past few months a few hiccups at Blythedale confirmed that I was left with no choice but to make the decision that I had to work toward bringing Dylan home and have things together so it could be done as soon as possible.&lt;/p&gt;<br>
&lt;p&gt;It was a tough decision not because I don't want Dylan home, but more so because of the immediate feelings of isolation I felt when I knew that's what I needed to do. You see, Dylan doesn't get visitors the way she used to and even though a lot of that has to do with the fact that Blythedale is located in White Plains, the fact remains that except for me and Dylan, life has gone on. And if I'm really going to be honest, even my life has gone on in some capacity. So selfish or not, I'm left feeling that although I'll have support from family and friends as I do now, for a majority of the time, that support will be from afar. That's a scary thought when I know what Dylan's care entails.&lt;/p&gt;<br>
&lt;p&gt;I'll need two nurses/nurses aides, a physical therapist, an occupational therapist, a doctor and hospital that I'm affiliated with enough so they'll get to know her case in case she needs to be hospitalized for any reason, a vehicle to transport her, a proper bed, medical supplies and enough space to house all this. It's overwhelming but I can't see any other alternative especially when the only one is a nursing home for kids which those in the industry call "skilled nursing facilities". To me, to confine Dylan to a facility like that is to give up hope on her condition ever improving. To send her to a place like that - especially since the ones I've been referred to are in Yonkers or further Upstate - is to essentially say that I've decided to move on with my life without her. That's not a decision I could ever make.</p>
<p>Maybe I need to change my perspective but I doubt that. I've felt like there have been whispers with sentiments along those lines since day one. Granted I feel and felt this from the medical staff of both hospitals, if that's who I interact with 90% of the time regarding Dylan, it's a heavy load to bear. And don't get me wrong, these people are not malicious, spiteful or even unempathetic. Their perspective is a clinical one where miracles rarely, if ever, happen. So for most of my existence with Dylan, I'm surrounded by non-believers.  It makes the visits to the hospital that much more difficult.
See why I just didn't say anything before? LOL
So next steps.... Well, I've skillfully crafted together a list of projects that should provide me with the financial freedom to get the space I'll need to bring Dylan home. And I've even considered the fact that probably won't be able to travel for pleasure for a while so will need my own safe haven for frequent staycations to keep me sane. As usual, it will not be simple or without its obstacles and challenges and I can't say that I'm ready for them. But I will say I have faith that I will have strength of The Most High, family and friends to help guide me through. I say, that's a pretty good start.

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