North Carolina and FFH

Let me start with, its a bummer that I have not been able to post new pictures up, we are in serious transition and just dumb luck that both of our computers malfunctioning right now.  Student life is not easy financially.  You see your friends taking vacations, buying new clothes, new houses, new cars and well we are lightyears away from doing all of that, yes even clothes!  Anyway, that is another post for another time...the life and journey to of a future physician!!

So I've said it a few times but haven't really commented on the fact that we are now living in Indiana.  Living on this side of the country offered us the opportunity to attend the last HPE conference in North Carolina.  Last week we had the great privilege of driving through some of the south from Kentucky, Ohio, Tennessee to the Carolinas.  It was just beautiful, I think we fell in love with that drive, coming from the west coast and southwest, its just a different kind of appreciation of the Lord's marvelous creations.  The people in the south are just...what can I say, welcoming!  Southern hospitality was in full force and we got a lot of it everywhere!  It was really welcoming and man what a change from where we've been!

Our trip was to, as I stated the HPE conference, in Concord, North Carolina.  HPE conferences are held every two years and we had been going back and forth as to whether or not we should attend.  Before Eva passed we thought we would for sure go, two years is a life time when you have a child with a "terminal" condition, you just don't know if they'll make the next one.  Things however, got hairy with moving across the country, the pregnancy, finances and Jose starting school only a few weeks after the conference, so we remained unsure.  After Eva passed, I thought I had my answer, it would just be impossible to go to the conference and be around all those families with there kiddos.  I mean I would probably fall apart and emotionally, I just didn't know what I could handle.  About a week or so before the conference, and after quite a bit of reflection, I could hear my Eva telling me, "you need this, you need them".  So we began to think about the trip again, after all Eva brought us to Indiana, and the conference was on this side of the country and a short 10 hour drive (same distance as Utah to Arizona about).  We made our plans to go, but I really didn't even get us packed until the night before we left, I just didn't want to think about it, its funny when you know something is right, you just know, I usually have coolers and food, clothes planned out etc..  I've gotten quite good at packing for the four of us, and considering I always had to think about Eva's food, feeding pump and bags, medical supplies etc... packing 3 people seemed like nothing!

When we arrived at our hotel, I was still not sure of myself and how things would feel, I felt extremely reserved.  We checked in and went straight to our room, I saw some families but just couldn't bring myself to say hi yet.  We got settled into our room, I knew Vandro wanted to swim (his new favorite thing to do), so we got him ready to swim.  Jose and he went down to the pool first and I stayed behind.  I had brought with us some collage pictures I made of Eva, one of her younger years and one of her later years.  I sat with her for a bit, I got on my knees and I prayed to my Father in Heaven.  I prayed for courage, I prayed to enjoy these families and I prayed for the ability to serve them.  Its so strange but so real that when you serve others, it truly lifts your burdens.  I went down stairs to the pool with my family, and saw these sweet girls (HPE kiddos) in the pool with their mothers.  Oh, my emotions were on the surface, I'm glad I was wearing sunglasses and in the pool, because I could not stop the waterworks. I wanted to grab them and hug them, their little spirits are so strong, one in particular made me think of Eva.  She just had this little face and smile that looked exactly like my daughter.  It was a good feeling!

After the pool we met with some of the board members and their families for dinner (I'm a board member of Families for HoPE, Inc. incidentally), we got to talk logistics about he conference, what still needed to be done, where they would need us etc..  The next day was Sunday, we greeted and registered the families that were coming in, we had some fun "get to know each other" activities with the other families.  What a great way to start the conference week.

The week was just wonderful, Vandro went to preschool all week at the kids camp they had, he did crafts, they were given lessons, they had a little play area outside.  He did pretty good, we we're so proud of him!  Jose and I were able to attend our own workshops, Hope and Healing workshops.  These workshops were focused more on loss, there were a couple of us in there that had recently lost a child.  It was so comforting to be able to express the different and wide range of emotions it feels like you go through.  There is/was so much involved in the care of Eva that no one really ever saw or experienced like I did.  I realized that my circle of close friends consisted of, my social worker, Eva's doctor, teachers, therapists and nurse that came and saw her twice a week.  When Eva passed, she not only left a huge void but so did the loss of everyone that I spoke to on a daily basis.  My everyday conversations were always about Eva and what Eva needed, what she was doing or how she was feeling.  Our plans evolved around her too.  So needless to say, my world was turned upside down and inside out.  Jose really didn't even know how much that affected me because he has always had to do "outside" things and had other obligations.  I was between two worlds, as I have often seen things. The one was my reality and the other the perception that I chose to give others.  Going to the hope and healing sessions helped me realize that I wasn't crazy, this feeling of "no one understanding" was replaced with the feeling of "I'm not alone".  The week was filled with visiting with families, chatting with old friends, that you just met and some that you see only every two years!  We stayed up late and got up early.

Having a child with special needs is well, special, different.  Although your family adjusts, the rest of the world is yet to catch up.  I can fully admit that I was not one that  was comfortable with different, I think a lot of people are the same way.  I mean unless you've had it in your life, you just don't know.  Having Eva gave me some wonderful perspective.  She definitely taught me how to love, how to be compassionate, and how to serve.  I think when she got her wheelchair and was out of her baby chair, I also experienced different lessons, like how uncomfortable people get around someone that looks and acts different.  Because of that I think I learned how to teach.  Eva had multiply seizures, Eva had screaming seizures, she wretched and she vomited.  She had times where her mucus build up was so much that she would just cough and gage until we could get it out.  She had a suction machine, that I chose not to use because it seemed so invasive, so I did everything myself.  Now imagine going to dinner and being sat in the middle of the dining room, you just notice everyone noticing you.  Eva was absolutely gorgeous, sweet, how could you not notice her but mostly I could see that the other things she did were what people took notice of.
So back to the conference, here we were sharing meals and playtime and visiting with each other and no one looked uncomfortable with what was going on around them.  There were families with loud children, because of seizures or spasms.  There were suction machines on and no one turned to look at what that strange noise was.  There were HPE kiddos that were being fed by there g-tubes or being fed like a baby with food all over their faces, trach tubes being cleared or cleaned, machines of all kinds going off... and no one stared.  Someone stated, "here WE are the normal".

How we missed Eva at that conference, but she was there.  She was known to everyone there, even those that never met her.  She was part of there family too!  We had joined a club, we did not ask to be a part of!
It was a comforting week and a challenge to leave.  We were just quiet on the drive home.  I guess reality was hitting me, we are getting ready for this new chapter, without Eva.  It was scary and a bit lonely.  When we got home, we had a few Eva things to greet us.  Angel Watch, the program we had been a part of in Utah, had sent us a bear their seamstress made out of Eva's blanket, Jose's aunt sent us a little angel figurine and then on our table was this beautiful arrangement of flowers that Eva's preschool teachers sent us.  What a merciful moment it was for me, for our family to be welcomed home in this way.

Our trip to NC and the conference was exactly what we needed to get this new chapter underway, we have a lot of work to do, grief is not something that you get done and take off your to do list, it is long and it can be for the rest of your life.  It just changes as time goes on.  I know that many people don't know what to say, and that the loss of a child creates even more discomfort than that of an adult.  I recognize that as friends and family it is not easy either, not knowing what to say or at times how to act.  So let me tell you this, I don't either!  I don't think something like this, is something you get good at.  We are all just trying to do our best, so my best advice to you who want to comfort or find the perfect words or gestures and maybe we aren't being the most helpful with telling you what to do, just be patient. Patience and love and friendship is all that I know I require, don't be afraid of me and definitely don't be afraid to ask me about Eva EVER!  I will always want to speak of her, and yes I will cry and that's ok if I cry it will not break me it will only make me stronger!

I don't speak for everyone that has suffered this kind of loss, and I may sound totally cheesy but love is a good answer and patience is a great asset.  I know I'm learning to have both!