Wednesday, May 27, 2009

Walk a Mile in my Stanford Corridor...

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.


  1. You are not too controlling:) You are a wonderful mother. And God has given you strength to get through these last few months. Its such a testimony to the greatness of Jesus... Thank you for being willing to share with everyone this journey. I know it has been a hard one, but you are such a strong woman who God has blessed. He will continue to bless you. Always.

  2. I cannot know and never want to experience the pain of sitting by my childs bedside. I have so admired your strength and faith.

    I did sit by my husbands bedside as he lost his battle with cancer. One thing I discovered is that I did hang on (some would say be 'in control') of the smallest things... When faced with so much spinning out of control, who wouldn't grab for some piece of something to hold onto???

    Don't ever let someone else define who you are with their words! You are an amazing woman who is walking through a mine field that is not mapped in any way. Remember guilt does not come from God.

    Be sure while taking care of David, your husband, kids, meds and doctor visits, yard work, laundry, grocery shopping, and all the other bits of life that you carve out some time for yourself!

    Know that there are many of us that are silently cheering and more importantly praying for you all!

  3. Bronwyn,
    I felt offended for you when I read the comment you are referring to, it was totally unnecessary after everything your family has been through.
    Only a mother can truly imagine the pain you've gone through the last six months. You've spent your adult years caring for & loving David and you can't just turn it off because he's now an adult. A mother is a mother forever even though the child isn't a child forever. We would give our lives for our children and you've done what you had to do to keep him alive and have shown great strength through it all. David is very lucky to have you as his mother.
    I know it's going to be tremendously hard to let him go to San Diego where you won't know what is truly happening. We'll be praying for David's continued progress toward a healthy life and for your comfort in knowing you have raised a good man and have been there for him when it counted.

  4. You are such an inspiration to me. You don't know me. My brother is on the USS Boxer, and I heard what happened to David In Hawaii, and I have been hooked to your blog ever since.

    I am a mom myself with two little ones at home. Every day when I would read your blog, I would think to myself, this mom is so strong, how is she doing it......but being a faithful woman, I know how you were doing it....God. I don't even know you, but there ia a thing that connects me with you. You love your family, just like I do. I think you are doing an AMAZING job with David and with juggling everything else at the same time.


    Please don't let anyone get you down. I understand your need to address this person who made you feel bad, but whoever it is like you said has not walked in your shoes, so they have no clue on you have gone through.

    Just as I pray for you and your family, I will also pray for the person who left the comment, that maybe God can soften their heart for some love and mercy.

  5. Bronwyn, You have been an inspiration to me, and I'm sure many others reading here. Please do not let the posts of ANYONE get you down. Let the Lord be your guide and your judge. There is no one else who has the right to stand in judgment. God Bless you!

  6. Bronwyn, you like my Mother have sat and witnessed the unimaginable.

    Believe Bronwyn when she says that she can't explain the feelings she felt whilst living the whole ordeal!
    My Mother was exactly the same = ) And I will forever be VERY greatful to her and will NEVER forget the feelings which I now know she kept well out of my knowledge when I was in Davids shoes 3 years ago.

    Don't let anyone tell you otherwise k? You're an AMAZING and VERY strong women/Mother. David is VERY blessed to have you like I was blessed to have my mother their for me too! = )

    She explained to me not that long ago how she got into the state that she was know longer alive and living her life but was alive and living mine. When I woke she woke, and she didn't close her eyes until I was safe. She told me how she laid there awake and would listen to me breath and couldn't rest for the first few weeks in the Hometel.

    Keep up the good work. You can slowly start to take a breather every now and again now lol...

    You, Dave and Doug are in my thoughts constantly! = )

    I need my bed now so will speak to ya later.

    12:40am here = S

    Up at 6:30 lol...

    Night ; )


  7. You hang in there. I did not see the nasty comment that was left and I hope that whom ever did leave it finds God and hopefully never has to be in your shoes.

    It was hard enough for you to go through what you did and even harder to re-go everything you did because of this person.

    I want to let you know, even though I do not know you or your family that you have been in my family prayer ever since we where told on N4MOMs about you and your son.

    You are a hero!!! I can not say what I would do in that situtation. Nobody till they live it could. But this I do know, you are thee most loving person and most unselfish person I have ever come across. You have touched so many peoples lives that you probably dont even realize. I only hope that should i ever find myself walking in the foot steps that you have walked that I find the grace to handle it as you. I fell that i have actually found a person that is not afraid to be a christian and not afraid to addmit her faults and strive to be better and most importantly a human that love the lord. You have have turned my family around in actually making an effort to go to services and to reach out even if we are trust the Lord will speak to us. I can only thank you for this family really loving the Lord with all of our hopes and dreams and accept what happens and have faith in him to bring us through.
    Please take NO credence to what ever this person said. You have gone down a journey with your family and David with the Lord shining in front of you. You have the grace and the pois of not only a believer but a true walk the walk believer. Honey, because of you your ups and downs and your gentle soul..YOU are the one responsible for at least on family seeking out the lord so much more. So if one person wants to say something mean...let them..for you know this family of 6 with a Sailor in Newport News has come to seek the Lord with such vigor and peace than we ever had before. You keep up what you are doing and let nodody hurt you!!Part of YOUR Christian Soldiers in Highland Indiana!!

  8. Brownyn - I initially feared that it was my comment that offended you, and I truly hope it was not. If so, I do apologize from the bottom of my heart. I have said it before, and I will say it are an amazing woman, an incredible mother, and it is obvious to those who know you, and should be to those who don't, how very much you love your family. You are exactly what a mother is supposed to be. You are doing whatever is necessary to take care of your son, to see to his needs, even when he has not felt up to it, have given him encouragement, care, everything you possibly can. If someone sees that as "controlling," so what. Maybe that is easy for someone else to say, but you know in your heart that you have done, and are doing all that you can for David, which is exactly what you as his mother should be doing. Don't let anyone else get you down, or make you feel bad because of callous remarks. David has made it this far, certainly thanks to our good Lord, but also because of you. Hang in there...I will continue to pray for him, for you, for Doug, and for your little ones too. Take care.

  9. Bronwyn - I did not read the comment either. But please know that you and your family have been in my prayers daily as I check to see how things are going. Your blog has been a blessing and a souce of strength.
    Love Donna

  10. Bronwyn - I do not know you and found this site through the website you referred to when you got your tattoo on facebook (great tattoo by the way). I believe that a mother never stops being a mother. You are being an advocate for your son when your son can not be an advocate for himself. You have instilled all of your energy and sacrificed your life and time with your children to care for him. For you to do your research and have the strength to take on doctors, nurses and the Navy needs to be commended! My 7yr old son had a pacemaker implanted in January due to a complete heart block. I am fortunate that his condition was caught during a routine 5yr old physical exam for school. I am thankful that he did not have to get so sick he pleaded for death to open their door. Please know that your story has helped many mothers be able to keep going when they believe they can't breathe anymore. The worst thing for a parent is to see their children hurt. Your "control" is to be admired, not condoned. You have become not only your son's advocate, but an advocate to many others. May God Bless you and your family. I am praying your son will get through this and be able to live a long and prosperous life.