It's been some time since I've written and that's been for several reasons.  Firstly, Dylan had several set backs the past few weeks.  She had seizures, then an asthma attack that put her back on the vent, then two infections in her trach tube and finally, her spasticity has gotten progressively worse each week.  I was emotionally drained a bit more each week and got to my lowest point during Week 13 where I just wasn't sure if I would be able to take anymore setbacks.  But as usual, God was there to provide me with exactly what I needed and during that week, I was house sitting for my best friend Sarah (love you girl!) and it turned out to be exactly what I needed.  I was back in Bed-Stuy and on my own.  I was in my old neighborhood - which was awesome! - and was able to just sit with my thoughts and feelings.  The time alone allowed me to realize a few things.  One, I was depressed.  I was living every moment anxious about what else would or could happen with Dylan.  Additionally, because I'd gained a considerable amount of weight in the past few months, I was feeling unsure about myself personally as well.  It was a recipe for disaster and although I had done well in avoiding the "D" word for quite some time since Dylan's illness, it was unavoidable and right in my face.  I'd have to deal with it.  Secondly, I needed to dedicate some real time and effort to taking care of myself emotionally and physically.  I had a wealth of friends and family who were truly trying to be there for me and I needed to use them; I needed to reach out for the help and support I needed.  And I needed to take time to get myself back into good physical health.  I needed to get rest, to get mobile, to do the little things that brought joy into to my life and made me happy.

So for the past two weeks, I've been trying to execute on these realizations.  Firstly, I've brought music back into the forefront of my life.  Music has always been a savior for me and so every moment I can or need to, I put it on and allow it to soothe me.  I've also been playing it for Dylan as well knowing that it will help her too.   Music has always been good to and for her as well.  I've also decided to listen to myself more.  To go with what my heart, mind and soul are saying to me and know that the decisions I make based on that can't be wrong.  For quite some time, I've worried about being able to do everything well.  What that left me with was feeling like a failure 90% of the time.  I realized that I was setting myself up for failure by setting my expectations too high and quite honestly, making it impossible for me to succeed.  I've decided that to get back into a routine of doing yoga and exercise is extremely important.  So I've given myself until October 1st to get that back into my routine.  I'm excited about the decision and am looking forward to it.  I've been able to see friends over the past few weeks and to make sincere attempts to socialize.  I hadn't realized how long it had been since I'd seen alot of my friends until last week.  It's been great and very much needed.

So how do I deal with Dylan? Well, there's lots to say around that.  The biggest challenge has always been the lack of control I have over this situation.  I am at the mercy of Dylan's brain injury and the doctors methods of treating all the complications that come with a brain injury.  So what could I control?  Of course, my reaction to the complications but aside that, I could also look into what the alternatives were to Dylan's current course of treatment.  You see, at Blythedale, their main focus is on keeping Dylan comfortable but what I was looking for was treatment that would work on improving Dylan's situation.  So I've just started the process of getting information on both facilities and doctors that are working on doing just that.  And I'll have to work at a good/great pace because the referral process to a "long term care facility" or "skilled nursing facility" but is really a nursing home for kids.  That, of course, will not do for my baby and I'd prefer to not have her stay there for even a second so my plan is to get her moved directly from Blythedale to the place that will help her to get better, not just keep her alive.  No disrespect at all to all they do at Blythedale. It's a great facility and they do work hard to keep the children comfortable.  However, for me, they are not doing what is needed for Dylan.  I believe in the miracle that Dylan is and need to get her to a place where there are doctors and staff that believe in the same.

So, that's my new focus: getting Dylan into the proper care for us to get to the next stage of her recovery, to take better care of myself and....to live a little. I'm excited about going through the planning and putting to action all these plans and to telling you all about it!

One!

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Tags: Blythedale, Children's, Dylan, Hospital, McKee, alternative, care, love, medicine, miracle, More…of, self, taking, yourself

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