So I've had a fairly hard time sleeping, well in all honesty I would say pretty severe insomnia to be exact. I feel like I try my best to get to bed early and "attempt" to sleep but I just can't stop thinking about things. I've been prescribed sleeping pills but have yet to take any. I'm so grateful we are where we are but I don't think the severity of what we just went through has hit me.
I was advised to go to a therapist yesterday (I guess this is just part of the process). My visit was really good, Dr. Jose Maldonado was very personable and not like most "shrinks", he was just there to listen, hear if I had any concerns and that was that. He didn't judge me, or tell me that what we are doing/feeling is wrong. He also mentioned to me that he felt what I did was a very courageous thing...which I quickly brushed off.
I have lots of people who say things to me. A perfect example is I had my post-surgery appointment yesterday as well, this was with Dr. Waldo Concepcion and this man is really amazing. Not only did he do the doctorly thing to do; check/clean my incision and advise me NOT to return to work for a minimum 6 weeks; he took it a step further. He spent 99% of his time explaining to me how what I just did for my son was a very selfless thing and that "I saved his life and the life of another", I said to him, what do you mean. He replied, "By you giving your liver to your son, you have saved his life, and by being a living related donor I have allowed another child to acquire that liver that Dylan would of needed from a deceased donor and that it was a heroic act that I did".
I explained to Dr. Concepcion that I do NOT feel that way and that I didn't do anything special, I'm just doing my part as a father/dad. I honestly don't feel like I have done anything, I simply laid on a table for these amazing people to do what they needed to do to save my son's life, NOT me. I understand that its scary what I went through, mentally and physically...I know I will be in pain for quite sometime to come and I know mentally that this whole thing will take a bit to get over, but it is what it is. The end goal is one common one, TO ENSURE MY SON'S SURVIVAL AND GIVE HIM THE BEST CHANCE AT LIFE. Nothing more, nothing less. I have done nothing different than any parent in my shoes would do. I just don't see this thinking, nor can I wrap my head around it. Even Amber says the same things to me, she feels like Dr. Concepcion and I strongly disagree. We (Amber and I) I have never viewed Dylan's hurdles, condition, or stresses that one will have as a nuisance but rather a gift; a challenging one but none-the-less a gift that we were chosen for.
I can't help but wonder, think about, and be curious of what the future holds for my family and especially Dylan's progress. We have spent the last 5.5 years being loving parents and caregivers to our child, maybe sometimes more a caregiver than a parent but none the less I feel Amber and I have done a decent, if not fantastic job of getting Dylan to this point. I wonder if this is the continued process of just keeping one going or do we get to relax a tad and finally get to let Dylan be a "normal" child and let him do the "normal" things of just being a kid. I think until the medicine regime reduces this will be a hard one, as of this moment his dosage and interval is insane; very time consuming and tedious. I as well take a decent amount of meds b/c of all this, aside from pain pills I take about half dozen meds and have to give myself injections daily for the next 6+ weeks, so I can somewhat relate to Dylan right now on that level as well.
I do look forward to a day (if this happens) when we look back on all this and it feels like a little road block in our lives. I know Dylan is where he is b/c of Amber and the unbelievable care she has sacrificed and given him throughout his life.
Where do we go from here? I imagine ONLY time will tell...
-Noah
I was advised to go to a therapist yesterday (I guess this is just part of the process). My visit was really good, Dr. Jose Maldonado was very personable and not like most "shrinks", he was just there to listen, hear if I had any concerns and that was that. He didn't judge me, or tell me that what we are doing/feeling is wrong. He also mentioned to me that he felt what I did was a very courageous thing...which I quickly brushed off.
I have lots of people who say things to me. A perfect example is I had my post-surgery appointment yesterday as well, this was with Dr. Waldo Concepcion and this man is really amazing. Not only did he do the doctorly thing to do; check/clean my incision and advise me NOT to return to work for a minimum 6 weeks; he took it a step further. He spent 99% of his time explaining to me how what I just did for my son was a very selfless thing and that "I saved his life and the life of another", I said to him, what do you mean. He replied, "By you giving your liver to your son, you have saved his life, and by being a living related donor I have allowed another child to acquire that liver that Dylan would of needed from a deceased donor and that it was a heroic act that I did".
I explained to Dr. Concepcion that I do NOT feel that way and that I didn't do anything special, I'm just doing my part as a father/dad. I honestly don't feel like I have done anything, I simply laid on a table for these amazing people to do what they needed to do to save my son's life, NOT me. I understand that its scary what I went through, mentally and physically...I know I will be in pain for quite sometime to come and I know mentally that this whole thing will take a bit to get over, but it is what it is. The end goal is one common one, TO ENSURE MY SON'S SURVIVAL AND GIVE HIM THE BEST CHANCE AT LIFE. Nothing more, nothing less. I have done nothing different than any parent in my shoes would do. I just don't see this thinking, nor can I wrap my head around it. Even Amber says the same things to me, she feels like Dr. Concepcion and I strongly disagree. We (Amber and I) I have never viewed Dylan's hurdles, condition, or stresses that one will have as a nuisance but rather a gift; a challenging one but none-the-less a gift that we were chosen for.
I can't help but wonder, think about, and be curious of what the future holds for my family and especially Dylan's progress. We have spent the last 5.5 years being loving parents and caregivers to our child, maybe sometimes more a caregiver than a parent but none the less I feel Amber and I have done a decent, if not fantastic job of getting Dylan to this point. I wonder if this is the continued process of just keeping one going or do we get to relax a tad and finally get to let Dylan be a "normal" child and let him do the "normal" things of just being a kid. I think until the medicine regime reduces this will be a hard one, as of this moment his dosage and interval is insane; very time consuming and tedious. I as well take a decent amount of meds b/c of all this, aside from pain pills I take about half dozen meds and have to give myself injections daily for the next 6+ weeks, so I can somewhat relate to Dylan right now on that level as well.
I do look forward to a day (if this happens) when we look back on all this and it feels like a little road block in our lives. I know Dylan is where he is b/c of Amber and the unbelievable care she has sacrificed and given him throughout his life.
Where do we go from here? I imagine ONLY time will tell...
-Noah
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