Earlier today a comment was left on the blog in regards to the last posting that I took very hard. It was a very judging comment on me as a mother and how I have chosen to react and interact in this situation the past 6 months. I prayed about it, discussed it with Doug, and then deleted the comment. I do not know who left the comment, but it hurt me deeply. I was trying to shake the hurt all day long. Then tonight when we went to bible study with our group of new found "San Jose" friends, the first verses we read about were all about judging others. I knew this was the Lord's way of telling me that I knew it was not right and I needed to stand up for myself and how I truly felt about this situation.
It is very easy for every one of us to look at someone else's situation and say how we would act or react if we were in their shoes. Come on now, we have all done it. But the bottom line is we can't say that until we have been there ourselves and even then it is just not the same. It is just like saying "my kids will never do that" and then they turn around and do it. We just can't judge what others are going through or how they are handling a certain situation because we just don't know how it really is.
The last 6 months have been anything but easy for me and my family, they have been down right awful. I have probably made some decisions that weren't for the best and I have probably said some things that I shouldn't have. But the bottom line is I have been there 100% for David and that is all that has really mattered to me. For some this can be mistaken as being to controlling, but again, unless you are here in my life, you have no right to pass that judgement. I gave up my life quite willing to be by his side and there is no place in the world that I would have rather been. Being here for him has been my life and it will be part of my life for the rest of my life, this process has totally changed it. Just because the transplant is over and he will be going to San Diego for awhile doesn't mean that my caring for him will stop and that my life will "start over" as it was commented.
It has taken me a long time in these past few months to learn that I no longer need to sugar coat just how bad our situation was. So for those of you, or even just that one person that would like to pass judgement on me as a mother, these next words are for you. Please try and visualize this while you read on. Day after day I sat by my son's side from 8am in the morning until 7pm at night watching him die a little bit more each day. It wasn't very obvious at first, but soon after the Jarvick was put in it became very rapid. I never once cried in front of him, not one time. I held it together because I did not want him to ever be scared or to think that he could not rely on me for his strength.
When the Jarvick was put in and my son woke up not being able to speak or use his right side, the terror that went through me is something that I will never not ever be able to put into words. But immediately I started thinking about how we would make that work if it happened to be a life long thing. Never did I let him think that it was impossible not to survive what was happening to him. Day after day in the ICU he would do nothing but dry heave and vomit because he couldn't keep anything down, and all I could do was hold him in my arms, and hold his head and neck because he was too weak to support himself while he was vomiting. And even then I was questioned because he didn't want visitors to come and see him that way. I watched him go from a trim 185 pounds to a scarce 150 pounds in 6 weeks time. It took all he could just to get out of bed and walk around the ICU floor, and that was with the help of me and 2 nurses.
He would lay there and look at me and tell me he wanted to die, do you know how hard that was for me to hear?? Your own child is looking you in the face and tells you he wants to die, and I would just look at him and tell him you have come this far don't give up now. Again, never once crying in front of him and only leaving his side to use the restroom or to eat. He would tell me that is was hard to sleep at night because he could feel and hear the Jarvick inside of him and it felt so unnatural, and I would just tell him in a no nonsense way, "It is keeping you alive, so deal with it." He got mad at me on more then one occasion because I was pushing him to stay alive when all he wanted to do was die. And then I would feel so guilty because at night I would collapse in my hotel bed and beg God crying to take him home because I couldn't bear to see him that way anymore.
I was the one that stood in the hallway when the doctors came to me and said, "all we can do is make him comfortable, he probably has a week or two at the most." I was all alone that day, just me. I started thinking about his funeral that day, what he would wear to be buried in, and even called and left a message for Monica LaMonte fully intending to ask her if Jeff would sing at the funeral. I did all of these things without him ever knowing, because I didn't want him to give up fighting EVER! I fought with the doctors when they wanted to take him off one of the medicines that I knew was keeping him alive and had no problem telling them I told you so when I proved my point to them.
Everything I did was for the beauty of that boy, everything I still do is for that child. I have taken on Stanford doctors, nurses, and even the United States Navy these last few months. I micro manage about 100 little details every day that nobody else would even think of, like for example what kind of Magnesium he can take, thats right he can't just take any old magnesium pill! Yes, he is learning this stuff as well, but who do think needed to learn it first! I know his medical history like the back of my hand and can reel it off to anyone in a split second if they asked as well as any medication he is currently on. This isn't being controlling, this is being his mother.
I will always remind him about his medicines, his blood pressures, and the things he needs to do to keep himself safe, because I came to darn close to losing him, I watched death close in on him and I will do everything in my power and through the Glory of God to protect him from that, why? Because I am his mother thats why. So if anyone wants to judge me on those actions or tell me that I am too "controlling" or that "I have my own life to get back to"... then just try walking a mile in one of my Stanford Corridors. It isn't fun, it isn't pretty, and it isn't for the weak hearted. Everything I have done I have only been able to do through the power of my Savior Jesus Christ, and I thank him every day for the strength that he has given me and the trials that he has brought me through.