Thursday, April 16, 2009

When it hits. It hits hard.

I knew it. I was too cool yesterday. Someone who didn't know me, said my sons name attached with "is more than likely to pass shortly after birth." When the perinatalogist would refer to Vayden he would call him "the baby". But now he is no longer "the baby" he's Vayden. I hate bladder obstructions, to hear the term a fluke will always bug me. In my life I thought a fluke would be hitting a million dollar jackpot and only using 2 quarters. That is really not the case.

Do things like this make you think about what you once considered to be unfair in life? Vashon was born with a moderate case of eczema, the worst part was that it was on his face. I recall crying and crying at night over this. Upset and angry wondering why my baby boy had to have this condition, yet we found a cream that actually worked in the flare ups and he grew out of it by age one. As silly as I feel about my passion for fixing his eczema I can relate to the core of my tears and anger. My child was in pain, and I couldn't do anything to fix it. Mothers and Fathers of even adult children know how bad that feeling is, flash backing on my 1 yr battle with eczema makes me even more at peace with our choice to select comfort care for Vayden.

This is all still so un real. It's like no matter how many needles in the belly, how many u/s sounds in different rooms at different offices I still sometimes feel like it's not my son it's their machines. Not that I've been taking it lightly, but I can guess that if I didn't have access to the internet or wasn't computer savvy, I would probably be on planet Care Bear. I'm grateful for the knowledge I searched for every night for months. I can't express the thankfulness I have for the other PUV or LUTO families who have lost. Still sometimes I wish I could be like my dad and not be able to use the FLASH button on the phone correctly. (sorry dad) The truth is, it makes things more simple, sure you don't know too much but you also don't hurt as much. I know this for a fact because my father is sick from something I can not even tell you the name of. The question isn't do I not know? the question is do I want to know? The answer is No. I know the basics and what not but I stay away from the text book side and the statistics, etc. He is my daddy and I love him, what more do I really need to know.
I wonder still sometimes why I didn't take that same pathway with Vayden's condition. I don't regret grabbing all the knowledge I took in and I also don't regret staying away from the text books in terms of my father. Every now and then I think would my days be easier if I didn't know as much as I know.

Well like I said in the post below I was sure this would hit me today and it has.

I'm still praying for you Vayden


  1. I think about you all the time! I'm sorry I STILL haven't called you yet, I have no excuse! I will talk to you soon!

  2. I sit here not knowing what to say to comfort or to help you. I too have been on vacation for 2 weeks with my two year old (girl) and am pregnant yet only about 8-9 weeks. I have been a photographer for NILMDTS for about a year and a half and no story has touched me like yours! I don't know if it is because I am pregnant right now and pray about the fate of my own unborn child or what...but all I can think about is how brave you are and will continue to be. I will pray for you and your family!

  3. Your entire family is in my thoughts and prayers . . .

    Strength and peace to you all.

  4. I would say yes. Things like this do make you think about the things you once considered unfair. They take on a whole new light IMO. I'm sorry the day was harder for you but I'm not surprised. Just know that it is ok.

  5. Steph, if you had not grabbed the info about Vayden, yes your days now would have been easier, but trust that the unknown later would have been devastating. I did the same thing you have done when your father got sick, I got as informed as I could even though I had no support other than family (no My Space, or Facebook back then)I prepared for the logical part of it but continued to not truely believe what the doctor's said and believed that God would work it out. That was about 17 years ago and while the miracles that I was expecting haven't occurred, many other miracles have resulted over time. You are wise to stay away from the text info for your dad, there is no reason to add undo worry when he has already exceeded what we were told. Your research in Vayden's case is different becasue the connection is different just like your dad's connection to me is different. I am confident that the research that you have done and the wonderful support from the other parents who have experianced PUV and others who have lost their precious babies, is positively preparing you for what may come, and while we continue to pray and believe for a miracle becasue MD's and test results, and written outcomes are nature but we are spiritual beings with a plan set by God, text book information is meant to be defyed, proven wrong, otherwise there would be no miracles, sometimes God's plan is not in line with our agenda or understanding but his plan works together for good whether we understand or agree with it. Your goal to experiance as much as possible with Vayden and the decisions you have made should the prognosis given to you proves to be true are based on love and knowledge from the research and live experiances shared with you. Your knowing about this condition will make handling the stated outcome far better than knowing nothing about it and having so many questions, so don't second guess your choices, we know that should a miracle occur Vayden will let it be known that he has been completely healed and is here to stay, you know how stubborn your child can be :>. You are doing a great work and touching and inspiring people, keep up the good work. As the days approach, keep your faith and spirits up, and continue to show all the love you can to Vayden. You are an ispiration and very blessed