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!
Wednesday, August 1, 2012
Sunday, July 15, 2012
For a moment I held an angel, I miss you Eva!!
As I look back at my posts, I wonder if it wasn't so much of the pregnancy but some kind of premonition that I had, that made me so emotional about Eva. In the months before her death I felt increasingly anxious and scared, emotional all over again, just like I was when we first got Eva's diagnosis. I always attributed to my pregnancy and how all over the place my emotions were, I can't tell you how many nights I didn't sleep, how I watched her sleep. How I got on my knees and begged the Lord for things to be different, and at times I would look at Eva and ask her how could I survive her leaving me, EVER. It seemed that when the house was quiet I could wonder it like some lost spirit, contemplating what the future would hold for us. It was lonely, these are not things you bring up to your friends or family, after 3 1/2 years, I think people expect that you have moved on from any of that initial pain and that the face you put forward is the one you always have on. I had social workers, therapist, good friends, but even for me it got tiring saying how much it hurt, and so you just stop saying it.
On June 15, 2012 at about 6 am, one of my greatest fears was realized, like the day of her unplanned arrival into our lives, she departed.
I never imagined (and believe me I had imagined it, I thought I could pre-mourn my daughter's death) that Eva would be gone only a week before our move to Indiana. I remember that morning and it haunts me, and I have prayed to replace that memory with other memories. NOT MY EVA....NOT NOW....I wanted more time, I wasn't ready, I kept telling her that, I wasn't ready.
The days after I felt like the walking dead, I just couldn't imagine how I would survive the rest of my life with this kind of pain. I felt desperate to smell her, to touch her. My Eva. For almost 4 years we were inseparable, I carried her for almost 10 months and after she was born I was always with her. I knew Eva, all about Eva. But the Lord prepares us, I know He does. Only a few months before, Eva stayed overnight for the first time at Peppi's House (a hospice respite home) while Jose, Vandro and I visited Indiana. It was so hard to leave her, but they cared and loved on her the whole 4 days. We used them two more times for a couple of overnight stays, and maybe that prepared me a little. I had never spent a night away from Eva. I couldn't trust anyone with Eva for that long nor could I burden someone with the "what if something happened while I was gone". As we prepared for Eva's memorial service and went through all the awful, real life things, picking clothes, talking with the cemetery, funeral home, picking a casket etc... I was scared to face so many people with this kind of grief, both Jose and I were scared.
Like a magical gift from my Father in Heaven, I got to be with Eva one more time. It is heart wrenching giving your child to some stranger in a hearse, someone who had never met her in life was taking her from me. With every fiber of my body I didn't want to hand her over, I wanted to keep her and hold her and make everyone and everything just disappear but I'm grateful for my son and for remembering that I also had an obligation to him and to teach him. We said goodbye to Eva, Vandro gave her a kiss and we said goodbye. Jose and I decided not to embalm Eva and there would be no open casket, and so on June 19th, the day before her memorial service, Jose and I went to dress our sweet Eva. We were scared, not knowing what we would find or if this would further scar us or heal us. But as I mentioned, like a magical gift from our Father in Heaven, it felt like we were with her again. She felt just as before, soft and delicate, a sleeping angel. Of course I cried, but this time with a gratitude I thought I could never feel, I thanked that sweet angel for letting me care for her, for letting me be her mother. I felt that baby there, we dressed her like we had so many times before. Eva had moments of "hibernation" where she slept for days, and you could bath her, dress her, brush her hair and she slept through everything. It was like being with her for one final goodbye. I know the spirit of the Lord and the spirit of my sweet girl were there, holding me, comforting me and reminding me of our Father in Heaven's promise to eternal families. It was like He whispered in my ear, remember your covenants. We took that feeling and Jose shared our testimonies of that at her memorial service. I know that neither of us could have gotten through our talks without that day with her. We got to share with those that came what we knew about our daughter, about our Father in Heaven's great Plan of Happiness and bout Eva's mission on this earth. The day of her service it was the most composed I had been and I was comforted by so many that shared that day with us. It was a beautiful service because of the love that existed there and in the hearts of those that could not be there with us.
True to life, in the days that have followed, the physical pain, is still there, not the same as it was in the days after her death and before that visit in the funeral home. I know that, that will take time. However, the knowledge that I will see my perfect daughter again, if I remain faithful to my covenants, comforts me, it has changed me. We talk of God, we talk of truth, we talk. But some times and for some of us, it isn't until we are faced with believing, that we listen. I thought I had listened, I thought I knew about love and about promises but I learned and listened for the first time on June 19, 2012, and I felt the confirmation of the Lord, that He loves me, that He blesses, that He is waiting for us. I also know that Jesus Christ not only provided away for all of us to come back to our Father but that our Father in Heaven truly wants us to be happy and have joy here on earth. It does not mean that we will not face trials, but it means that He is here to comfort us through them, WE ARE NOT ALONE!
As I stated, I know that it will take time, and as we start our new life here in Indiana, and I unpack things, Eva's things, the tears come back, my heart aches again, I turn to the Lord to comfort me, to help me be the wife my husband needs and the mother my son and soon to be infant daughter need. I am grateful for them too.
Eva Isabel Peña, was a missionary, the tiniest missionary. I believe Eva's objective on this earth was to teach of Christ, she did not have a pulpit nor could she speak with words, however, Eva loudly proclaimed the teachings of Christ: faith, charity and love!
I love you forever, I love you for always and I will see you again Eva!
On June 15, 2012 at about 6 am, one of my greatest fears was realized, like the day of her unplanned arrival into our lives, she departed.
I never imagined (and believe me I had imagined it, I thought I could pre-mourn my daughter's death) that Eva would be gone only a week before our move to Indiana. I remember that morning and it haunts me, and I have prayed to replace that memory with other memories. NOT MY EVA....NOT NOW....I wanted more time, I wasn't ready, I kept telling her that, I wasn't ready.
The days after I felt like the walking dead, I just couldn't imagine how I would survive the rest of my life with this kind of pain. I felt desperate to smell her, to touch her. My Eva. For almost 4 years we were inseparable, I carried her for almost 10 months and after she was born I was always with her. I knew Eva, all about Eva. But the Lord prepares us, I know He does. Only a few months before, Eva stayed overnight for the first time at Peppi's House (a hospice respite home) while Jose, Vandro and I visited Indiana. It was so hard to leave her, but they cared and loved on her the whole 4 days. We used them two more times for a couple of overnight stays, and maybe that prepared me a little. I had never spent a night away from Eva. I couldn't trust anyone with Eva for that long nor could I burden someone with the "what if something happened while I was gone". As we prepared for Eva's memorial service and went through all the awful, real life things, picking clothes, talking with the cemetery, funeral home, picking a casket etc... I was scared to face so many people with this kind of grief, both Jose and I were scared.
Like a magical gift from my Father in Heaven, I got to be with Eva one more time. It is heart wrenching giving your child to some stranger in a hearse, someone who had never met her in life was taking her from me. With every fiber of my body I didn't want to hand her over, I wanted to keep her and hold her and make everyone and everything just disappear but I'm grateful for my son and for remembering that I also had an obligation to him and to teach him. We said goodbye to Eva, Vandro gave her a kiss and we said goodbye. Jose and I decided not to embalm Eva and there would be no open casket, and so on June 19th, the day before her memorial service, Jose and I went to dress our sweet Eva. We were scared, not knowing what we would find or if this would further scar us or heal us. But as I mentioned, like a magical gift from our Father in Heaven, it felt like we were with her again. She felt just as before, soft and delicate, a sleeping angel. Of course I cried, but this time with a gratitude I thought I could never feel, I thanked that sweet angel for letting me care for her, for letting me be her mother. I felt that baby there, we dressed her like we had so many times before. Eva had moments of "hibernation" where she slept for days, and you could bath her, dress her, brush her hair and she slept through everything. It was like being with her for one final goodbye. I know the spirit of the Lord and the spirit of my sweet girl were there, holding me, comforting me and reminding me of our Father in Heaven's promise to eternal families. It was like He whispered in my ear, remember your covenants. We took that feeling and Jose shared our testimonies of that at her memorial service. I know that neither of us could have gotten through our talks without that day with her. We got to share with those that came what we knew about our daughter, about our Father in Heaven's great Plan of Happiness and bout Eva's mission on this earth. The day of her service it was the most composed I had been and I was comforted by so many that shared that day with us. It was a beautiful service because of the love that existed there and in the hearts of those that could not be there with us.
True to life, in the days that have followed, the physical pain, is still there, not the same as it was in the days after her death and before that visit in the funeral home. I know that, that will take time. However, the knowledge that I will see my perfect daughter again, if I remain faithful to my covenants, comforts me, it has changed me. We talk of God, we talk of truth, we talk. But some times and for some of us, it isn't until we are faced with believing, that we listen. I thought I had listened, I thought I knew about love and about promises but I learned and listened for the first time on June 19, 2012, and I felt the confirmation of the Lord, that He loves me, that He blesses, that He is waiting for us. I also know that Jesus Christ not only provided away for all of us to come back to our Father but that our Father in Heaven truly wants us to be happy and have joy here on earth. It does not mean that we will not face trials, but it means that He is here to comfort us through them, WE ARE NOT ALONE!
As I stated, I know that it will take time, and as we start our new life here in Indiana, and I unpack things, Eva's things, the tears come back, my heart aches again, I turn to the Lord to comfort me, to help me be the wife my husband needs and the mother my son and soon to be infant daughter need. I am grateful for them too.
Eva Isabel Peña, was a missionary, the tiniest missionary. I believe Eva's objective on this earth was to teach of Christ, she did not have a pulpit nor could she speak with words, however, Eva loudly proclaimed the teachings of Christ: faith, charity and love!
I love you forever, I love you for always and I will see you again Eva!
Monday, March 26, 2012
So Proud of you Big Girl!!
Tuesday, March 13, 2012
We are bad picture takers....or posters...bloggers?!
After reading blogs and seeing the new Facebook timeline, I realized for the first time...we don't have any honeymoon pictures!
*******WARNING: If you don't want to hear complaining and if you only like fluffy, "My Life is Perfect" posts, stop reading now and go back to posting on your "My Life is Perfect" blog********
Ok, so I continue, cause after all this is my blog, my thoughts and if you don't like it, please refrain from posting comments, visiting my blog or really lets just stay acquaintances, I like my friends real and after all real people with real lives don't have ANYTHING perfect!!
I digress, so I really need to work on the memory making. I've noticed their are two kinds of bloggers, the kind that are so creative and artistic and you just literally learn from their blogs. They are positive but not fake, they have bad days and proudly display them, they apologies for gloomy posts but make no apologies about who they are and then there are the everything is beautiful and perfect in my life and whatever isn't I simply will never post it or I cut it out of my life! I admit I read both, the latter sometimes out of sheer obligation but the whole time is like major eye role!!!
So I will focus on the first blogger, I recently found a few, I love love love their pictures and this is what reminded me that I have no pictures of my honeymoon! We'll we kind of had a last minute honeymoon and the pictures we did have were on our phones (that we no longer own). What I also love about these other bloggers is that they are of all different...let's say sizes, colors, heights etc...but they look amazing in every picture they take and are in! I really think the camera sees right through you, like where you are in life and how you feel about yourself...it doesn't lie or fake! Or the photographer is amazing and it can help the camera do its job!
I will admit, that I have been aware of my not taking/posting pictures problem for awhile and I do have a ton of pictures since I've had kids (well a ton for me...anyway) but I haven't put them up. I'm also kind of careful about what I want out there in the internet. I have law enforcement in my family and I think that has something to do with it, I just don't want some pedophile searching on the internet for pictures and uses my kids! I just do not like it when little kids are posed topless with only jewelry on or babies with only a tutu on, I know I might sound paranoid but if you heard the true stories I did you would take those off your internet accounts ASAP too!! The other thing I figure, those closest to me will come to my home and see my pictures and look at my albums and be able to see the chronology of our lives! I like that idea!
Facebook is nice and so is blogging but sometimes its like celebrity, don't put stuff out there that you don't want criticized or reposted somewhere else. I am very conscious by the way of what I blog about too, Oprah once said, (and this was early 90's Oprah) "Don't put anything out there that you don't want in the front page of the New York Times" and that should help you be careful about what you write! It doesn't mean you have to write fluff and perfect stuff only either! What I like most about the real blogs is that they make me feel all is possible, a beautiful family, righteous living and all of this even with bad stuff along the way.
So I say, I am a recovering bad picture taker...and thank you to all you good bloggers and picture takers for your continued inspiration!
*******WARNING: If you don't want to hear complaining and if you only like fluffy, "My Life is Perfect" posts, stop reading now and go back to posting on your "My Life is Perfect" blog********
Ok, so I continue, cause after all this is my blog, my thoughts and if you don't like it, please refrain from posting comments, visiting my blog or really lets just stay acquaintances, I like my friends real and after all real people with real lives don't have ANYTHING perfect!!
I digress, so I really need to work on the memory making. I've noticed their are two kinds of bloggers, the kind that are so creative and artistic and you just literally learn from their blogs. They are positive but not fake, they have bad days and proudly display them, they apologies for gloomy posts but make no apologies about who they are and then there are the everything is beautiful and perfect in my life and whatever isn't I simply will never post it or I cut it out of my life! I admit I read both, the latter sometimes out of sheer obligation but the whole time is like major eye role!!!
So I will focus on the first blogger, I recently found a few, I love love love their pictures and this is what reminded me that I have no pictures of my honeymoon! We'll we kind of had a last minute honeymoon and the pictures we did have were on our phones (that we no longer own). What I also love about these other bloggers is that they are of all different...let's say sizes, colors, heights etc...but they look amazing in every picture they take and are in! I really think the camera sees right through you, like where you are in life and how you feel about yourself...it doesn't lie or fake! Or the photographer is amazing and it can help the camera do its job!
I will admit, that I have been aware of my not taking/posting pictures problem for awhile and I do have a ton of pictures since I've had kids (well a ton for me...anyway) but I haven't put them up. I'm also kind of careful about what I want out there in the internet. I have law enforcement in my family and I think that has something to do with it, I just don't want some pedophile searching on the internet for pictures and uses my kids! I just do not like it when little kids are posed topless with only jewelry on or babies with only a tutu on, I know I might sound paranoid but if you heard the true stories I did you would take those off your internet accounts ASAP too!! The other thing I figure, those closest to me will come to my home and see my pictures and look at my albums and be able to see the chronology of our lives! I like that idea!
Facebook is nice and so is blogging but sometimes its like celebrity, don't put stuff out there that you don't want criticized or reposted somewhere else. I am very conscious by the way of what I blog about too, Oprah once said, (and this was early 90's Oprah) "Don't put anything out there that you don't want in the front page of the New York Times" and that should help you be careful about what you write! It doesn't mean you have to write fluff and perfect stuff only either! What I like most about the real blogs is that they make me feel all is possible, a beautiful family, righteous living and all of this even with bad stuff along the way.
So I say, I am a recovering bad picture taker...and thank you to all you good bloggers and picture takers for your continued inspiration!
Wednesday, February 29, 2012
Alobar Holoprosencephaly...I can only speak for myself!
H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y
Holoprosencephaly...I could hardly say it, let alone spell it, and this word changed my life forever 3 1/2 years ago. I don't know why but lately I've been back there, in those first few days after we heard that diagnosis. What I feel and remember is so real and raw sometimes, how can a word or a phrase or a moment change someone so much. It did. That day, I really really grew up. I was in something that I could not change or have control over. I was in all the way. Never in my life previous had I experienced anything like that, I was a good runner, I could run away, I could let anything go that was "uncomfortable", but this I could not.
I have encountered many parents with children with similar diagnosis, and to be honest I admire their way of "seeming" to let go and just be "normal". Maybe they say the same about me, but I guess I'm letting the cat out of the bag. It hurts. Sometimes I just want to grab Eva and hug her Well. I want to hear her say momma so bad, I want her to want me and ask for me. I want her to complain and laugh when I tickle her. But when I hold her, I know she knows me and my silliness. I know she knows all of that is not important. When I hold her, I do feel her holding me right back.H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, I can spell it really fast now, I can say it without stutter. Please ask me about Eva, Please don't just stare. Please let your little children ask about her and not make them turn away. I know with out a doubt in my mind, that even without language Eva can speak volumes to you. Let me tell you about her. Let me share her with you.
I may not Tweet, Facebook or Blog our every day lives. I may not post medications that she takes, or post pictures of procedures she's had, but thank you to the parents that do, I know you educate by doing that, I'm not there yet. Medically speaking what Eva has is what Eva has, what time she has is the time she has, there is no cure, there is no fix, there is only purpose. I want to share with everyone who Eva is not what she has, and I don't know exactly how to do that. I mean, the last, very last thing I want is for anyone to ever look at my daughter and Feel sorry for her or me. I never want to put her in that light, Eva is happy being Eva and she teaches the rest of us that its ok, particularly mom! I'm still a little bit in a bubble about Eva, thus far my blogging has been about it, I'm working on it!
I am so proud of her work in therapy, about her going to school soon, about her cute long hair. But I swear that little girl is a teacher! She taught me how to spell, H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, M-O-T-H-E-R and more importantly F-O-R-E-V-E-R!
I can only speak for myself and our situation in regards to Alobar Holoprosencephaly, and how we live with it, what medical avenues we've chosen and what kind of intervention if any we will take. It is not a condition that can be boxed, although a physician and a scientist may say different. Although many children look similar, every single one of them is different. Although some parents may want to be an HPE experts they can only be an expert on their child, not any one else's.
If you find yourself there, If you find yourself hearing a doctor utter that word to you, remember two things. You are not alone and You are the captain of the ship, it is your child and your decision, physicians are there to provide guidance and answer questions but it is all your decision!
I leave you with these thoughts, I needed to just get them out there!
Tuesday, January 24, 2012
Boy have I been waiting for this one!!
Words can not express the emotions that have gone on these last few weeks or month in our home! We literally have had an abundance of support and blessings, "the heavens have poured out her blessings" on us! Brothers and Sisters, Friends, Family, perfect Strangers...the Lord hears and answers our prayers! If you didn't know this, KNOW it, if you KNEW it, don't forget it, if you want to know, ASK Him, go to Him with a broken heart and a contrite spirit!!!
First of all....I have been waiting, some days not so patiently, waiting to post this:
JOSE GOT INTO MEDICAL SCHOOL, he has been invited to Indiana University's School of Medicine's class of 2016, that is right, he did it and as I stated above...the Lord answers prayers! I know Jose will do wonderfully in medical school, I know that he can compete with the best of them. I also know that the Lord's hand was in his getting accepted! Jose worked hard after very difficult back to back semesters, when we found out about Eva's diagnosis and when Eva was born. He spent the next almost two years trying to recover. On paper and by grades and scores, he did not seem so competitive(in the MD arena anyway)...shame on you schools who did not take your opportunity to interview him and really get to know who he was, shame on you not seeing this diamond in the rough!!
Hooray Indiana...for your insight in choosing first of all to interview Jose and then for inviting him into your class!
Jose got into Indiana (top ranking medical school by the way) after only 2 rounds of interviewee considerations (2 rounds from his interview date). His interview trip to Indiana was full of blessings from the moment he got his interview day (on his birthday), to finding a great person to stay with (transplant surgeon), to getting a great interviewer, a physician (who first hand had experienced having a very sick child)...coincidence or the Lord's hand at work? My husband is a hard worker, honest and true! But we ultimately thank our Father in Heaven for His constant watch over our family and Jose!
Heavenly Father, clearly, asks us to do the work, Jose did just that, he also encourages us to not only remember Him in thanksgiving but to ask for what we want (righteously of course)! What have you done for Him lately or for your neighbor? I ask myself this question all of the time. In our case I feel that Heavenly Father's blessings are this constant reminder for us NEVER to forget to serve His children. I may not have grandiose means to serve His children, but I am reminded that I can serve Him without grand gestures, just pure intentions!
I can't really begin to explain the wonderful wonderful inspired people that we find in our lives. Amazing, thoughtful, generous and kind people who have taught us the meaning of being a servant of Christ. Where I have seen the dark in people I have seen 10 more with love, generosity and kindness! That has been a blessing.
I hope I never forget this moment in our lives....
I have been waiting to blog about these feelings, waiting to get that oh so big news, but as I sit her typing I realize, there are no words powerful enough to express the way I feel! Its BIG and I'm with a full heart!
I hope friends and family that you can help hold me accountable for these words I share with you today, for these feelings that are so big and that you help me remember!!
Jose and I are fully aware that any journey we take in life big or small does not have to be alone, we have never been alone. Even in the furthest place from people we knew, from our family....we were never alone. Loneliness is a feeling we chose to have or not to have. I had to tell myself that many times, we really are never alone. Jose and I welcome this new journey and chapter in our lives, we maybe moving 2,000 miles away from our family but we know we are never alone.
The world is smaller than we know and time goes faster than we care to acknowledge. Let's make the most of this wonderful chance at life we have been given, that's how it should be from the get go, right?
Anyway, its been an overwhelming month, weeks and few days!
I can't wait to see whats around that corner!
First of all....I have been waiting, some days not so patiently, waiting to post this:
JOSE GOT INTO MEDICAL SCHOOL, he has been invited to Indiana University's School of Medicine's class of 2016, that is right, he did it and as I stated above...the Lord answers prayers! I know Jose will do wonderfully in medical school, I know that he can compete with the best of them. I also know that the Lord's hand was in his getting accepted! Jose worked hard after very difficult back to back semesters, when we found out about Eva's diagnosis and when Eva was born. He spent the next almost two years trying to recover. On paper and by grades and scores, he did not seem so competitive(in the MD arena anyway)...shame on you schools who did not take your opportunity to interview him and really get to know who he was, shame on you not seeing this diamond in the rough!!
Hooray Indiana...for your insight in choosing first of all to interview Jose and then for inviting him into your class!
Jose got into Indiana (top ranking medical school by the way) after only 2 rounds of interviewee considerations (2 rounds from his interview date). His interview trip to Indiana was full of blessings from the moment he got his interview day (on his birthday), to finding a great person to stay with (transplant surgeon), to getting a great interviewer, a physician (who first hand had experienced having a very sick child)...coincidence or the Lord's hand at work? My husband is a hard worker, honest and true! But we ultimately thank our Father in Heaven for His constant watch over our family and Jose!
Heavenly Father, clearly, asks us to do the work, Jose did just that, he also encourages us to not only remember Him in thanksgiving but to ask for what we want (righteously of course)! What have you done for Him lately or for your neighbor? I ask myself this question all of the time. In our case I feel that Heavenly Father's blessings are this constant reminder for us NEVER to forget to serve His children. I may not have grandiose means to serve His children, but I am reminded that I can serve Him without grand gestures, just pure intentions!
I can't really begin to explain the wonderful wonderful inspired people that we find in our lives. Amazing, thoughtful, generous and kind people who have taught us the meaning of being a servant of Christ. Where I have seen the dark in people I have seen 10 more with love, generosity and kindness! That has been a blessing.
I hope I never forget this moment in our lives....
I have been waiting to blog about these feelings, waiting to get that oh so big news, but as I sit her typing I realize, there are no words powerful enough to express the way I feel! Its BIG and I'm with a full heart!
I hope friends and family that you can help hold me accountable for these words I share with you today, for these feelings that are so big and that you help me remember!!
Jose and I are fully aware that any journey we take in life big or small does not have to be alone, we have never been alone. Even in the furthest place from people we knew, from our family....we were never alone. Loneliness is a feeling we chose to have or not to have. I had to tell myself that many times, we really are never alone. Jose and I welcome this new journey and chapter in our lives, we maybe moving 2,000 miles away from our family but we know we are never alone.
The world is smaller than we know and time goes faster than we care to acknowledge. Let's make the most of this wonderful chance at life we have been given, that's how it should be from the get go, right?
Anyway, its been an overwhelming month, weeks and few days!
I can't wait to see whats around that corner!
Tuesday, January 10, 2012
The Articles of Faith
So I committed to myself this year I would blog more, I've committed to that like a hundred times so bare with me...LOL! Anyhow this post came from a small prompting as I was thinking of what I would like to share, outside of my family situation, in a blog. The Articles of Faith are thirteen statements of LDS beliefs, they were written in order to explain our beliefs as members of the Church of Jesus Christ of Latter-day Saints! Here they are:
1. We believe in God, the Eternal Father, and in His Son, Jesus Christ, and in the Holy Ghost.
2. We believe that men will be punished for their own sins, and not for Adam's transgression
3. We believe that through the Atonement of Christ, all mankind may be saved, by obedience to the laws and ordinances of the Gospel.
4. We believe that the first principles and ordinances of the Gospel are: first, Faith in the Lord Jesus Christ; Second, Repentance; third, Baptism by immersion for the remission of sins; fourth, laying on of hands for the gift of the Holy Ghost.
5. We believe that a man must be called of God, by prophecy, and by the laying on of hands by those who are in authority, to preach the Gospel and administer in the ordinances thereof.
6. We believe in the same organization that existed in the Primitive Church, namely, apostles, prophets, pastors, teachers, evangelists and so forth.
7. We believe in the gift of tongues, prophecy, revelation, visions, healing, interpretation of tongues, and so forth.
8. We believe the Bible to be the word of God as far as it is translated correctly; we also believe the Book of Mormon to be the word of God.
9. We believe all that God has revealed, all that He does now reveal, and we believe that He will yet reveal many great and important things pertaining to the Kingdom of God.
10. We believe in the literal gathering of Israel and in the restoration of the Ten Tribes; that Zion (the New Jerusalem) will be built upon the American continent; that Christ will reign personally upon the earth; and, that the earth will be renewed and receive its paradisiacal glory.
11. We claim the privilege of worshiping Almighty God according to the dictates of our own conscience, and allow all men the same privilege, let them worship how, where, or what they may.
12. We believe in being subject to kings, presidents, rulers and magistrates, in obeying, honoring, and sustaining the law.
13. We believe in being honest, true, chaste, benevolent, virtuous, and in doing good to all men; indeed, we may say that we follow the admonition of Paul--We believe all things, we hope all things, we have endured many things, and hope to be able to endure all things. If there is anything virtuous, lovely, or of good report or praiseworthy, we seek after these things.
Writing this blog has allowed me to remember the promises I made in baptism and the covenants I entered into. As I share these beliefs, these Articles of Faith, I am reminded that there are some things I do not honor so well and that I must do a better job. If you have any further questions on these articles or other beliefs of the LDS church, please feel free to stop by at LDS.org or Mormon.org
1. We believe in God, the Eternal Father, and in His Son, Jesus Christ, and in the Holy Ghost.
2. We believe that men will be punished for their own sins, and not for Adam's transgression
3. We believe that through the Atonement of Christ, all mankind may be saved, by obedience to the laws and ordinances of the Gospel.
4. We believe that the first principles and ordinances of the Gospel are: first, Faith in the Lord Jesus Christ; Second, Repentance; third, Baptism by immersion for the remission of sins; fourth, laying on of hands for the gift of the Holy Ghost.
5. We believe that a man must be called of God, by prophecy, and by the laying on of hands by those who are in authority, to preach the Gospel and administer in the ordinances thereof.
6. We believe in the same organization that existed in the Primitive Church, namely, apostles, prophets, pastors, teachers, evangelists and so forth.
7. We believe in the gift of tongues, prophecy, revelation, visions, healing, interpretation of tongues, and so forth.
8. We believe the Bible to be the word of God as far as it is translated correctly; we also believe the Book of Mormon to be the word of God.
9. We believe all that God has revealed, all that He does now reveal, and we believe that He will yet reveal many great and important things pertaining to the Kingdom of God.
10. We believe in the literal gathering of Israel and in the restoration of the Ten Tribes; that Zion (the New Jerusalem) will be built upon the American continent; that Christ will reign personally upon the earth; and, that the earth will be renewed and receive its paradisiacal glory.
11. We claim the privilege of worshiping Almighty God according to the dictates of our own conscience, and allow all men the same privilege, let them worship how, where, or what they may.
12. We believe in being subject to kings, presidents, rulers and magistrates, in obeying, honoring, and sustaining the law.
13. We believe in being honest, true, chaste, benevolent, virtuous, and in doing good to all men; indeed, we may say that we follow the admonition of Paul--We believe all things, we hope all things, we have endured many things, and hope to be able to endure all things. If there is anything virtuous, lovely, or of good report or praiseworthy, we seek after these things.
Writing this blog has allowed me to remember the promises I made in baptism and the covenants I entered into. As I share these beliefs, these Articles of Faith, I am reminded that there are some things I do not honor so well and that I must do a better job. If you have any further questions on these articles or other beliefs of the LDS church, please feel free to stop by at LDS.org or Mormon.org
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