Monday, February 28, 2011
Seven Months Later...
Believe it or not...Aralyn Faith is 7 months old.
It hasn't been an easy journey but she is still here. Doctors constantly remind me that she is terminal but as each day passes I have a harder time believing them. Friday I found out that she will be getting a PEG Tube to replace her NG Tube. I understand that she is under weight and I realize that this is a common surgery but that doesn't make it any easier. She is only 12 pounds. How do you sedate and operate on a child so small? What if that's when she goes Home? What if this one operation causes her to lose her battle with Trisomy 8? I won't be holding her or even in the same room with her. How do I become OK with this? I sat on the floor holding her the other night and I could not stop crying, begging her not to leave me. After a while I remembered that it wasn't up to her. Sometimes I wish God would just say a date and time. She has a personality, smile, laugh, life. She is a person. I know it would have been hard to lose her like expected but I feel like it's going to be harder now that I have had time with her. She is my baby girl, my miracle.
Rhagan, my 4 year old son, loves his little sister but he too knows that somethings not right. As his mom I felt like the right thing to do was to warn him before hand that Aralyn was very sick and she may go to heaven sooner than later. About once a week he asks, "Is sissy going to go play with Jesus today?". One little sentence shatters my heart into a million little pieces. For seven months I have been able to answer his question with a simple"no" but one day, I know that won't be the case.
I smile, I answer questions, I ignore rude stares, I cry. Is there a proper way to prepare for the unknown? If so, I haven't figured it out yet.
It hasn't been an easy journey but she is still here. Doctors constantly remind me that she is terminal but as each day passes I have a harder time believing them. Friday I found out that she will be getting a PEG Tube to replace her NG Tube. I understand that she is under weight and I realize that this is a common surgery but that doesn't make it any easier. She is only 12 pounds. How do you sedate and operate on a child so small? What if that's when she goes Home? What if this one operation causes her to lose her battle with Trisomy 8? I won't be holding her or even in the same room with her. How do I become OK with this? I sat on the floor holding her the other night and I could not stop crying, begging her not to leave me. After a while I remembered that it wasn't up to her. Sometimes I wish God would just say a date and time. She has a personality, smile, laugh, life. She is a person. I know it would have been hard to lose her like expected but I feel like it's going to be harder now that I have had time with her. She is my baby girl, my miracle.
Rhagan, my 4 year old son, loves his little sister but he too knows that somethings not right. As his mom I felt like the right thing to do was to warn him before hand that Aralyn was very sick and she may go to heaven sooner than later. About once a week he asks, "Is sissy going to go play with Jesus today?". One little sentence shatters my heart into a million little pieces. For seven months I have been able to answer his question with a simple"no" but one day, I know that won't be the case.
I smile, I answer questions, I ignore rude stares, I cry. Is there a proper way to prepare for the unknown? If so, I haven't figured it out yet.
Where it all began...
I've been told that blogging can be therapeutic so here I go...
In August 8, 2009, I married my best friend, my soulmate, Matt. We had a dream wedding to start off our dream life. After honeymooning in South Padre we came home and settled in.
On November 24, 2009 we learned that I was pregnant. What a joyous occasion, right? Wrong! Don't get me wrong, we were thrilled to be expecting but the news we got shortly after turned our world upside down. I was desperate to know if we were going to have a boy or a girl but the day I heard "It's a girl!" I also heard "Something's not right.". My daughter, Aralyn Faith, had fluid on her brain. I researched and learned that tons of "normal" people live "normal" lives with hydrocephalus so I thought I could handle it. Aralyn Faith was then diagnosed with a rare chromosome disorder called Trisomy 8 and Agenesis of the Corpus Callosum after an amnio and fetal MRI. Sitting on the cold, plastic chair, fists clenched, I was told that my daughter would never live. I had felt her, named her, talked to her, carried her and then had to plan to bury her. My first thought was that they mixed up my labs with someone else. No one in Matt's or my family has any kind of disorder, especially not chromosome related. But there was no mix-up. The lab results belong to me and my unborn child. My sweet, innocent angel was dying and I couldn't do anything to protect her. She was in my womb and I couldn't protect her. I had no idea my daughter was fighting a war all on her own. Matt and I were given 2 choices: terminate or deliver and watch her pass away.
On July 26, 2010 Aralyn Faith entered this world at 8:03am weighing 6 pounds, 2 ounces. She was beautiful! Her deep purple, blue eyes cut straight through my heart. I had to touch her, see her, smell her, kiss her. I knew she would be going home to her Father soon and I didn't think I could let her go. Hospice prepared me, family supported me, doctors informed me but once I saw her, I could no longer except her fate. My recovery room was flooded with family, friends, and church family. Everyone got to see the "Miracle Baby". News traveled fast in the hospital. I remember looking at the clock and it was 9:27am. Over an hour had past and it was surely getting closer...closer to my daughter's death. Our room was lit up with flashes. We weren't expecting much time with her but we were going to have every single moment captured.
24 hours went by and Aralyn was still with us, on the third day she was with us, and went home with us. That moment is when we all realized that maybe, just maybe God was not ready for her yet. We brought her home to an empty room. Why decorate a nursery when I was going to come home without a baby? A few close friends turned an empty room into a beautiful nursery in 2 days. And then I cried.
I had a terminal baby in my arms, in my house. What was I supposed to do? What if she died? Who do I call? 911 is to save the living. I was terrified. I was empty. Everyone prays for a healthy baby and some even wish for a certain sex. All I wanted was a living child. Hair color and the number of fingers she had didn't mean anything. I just wanted her, prayed for her to breath. In and out, in and out...I never knew a child could be born without that ability.
In August 8, 2009, I married my best friend, my soulmate, Matt. We had a dream wedding to start off our dream life. After honeymooning in South Padre we came home and settled in.
On November 24, 2009 we learned that I was pregnant. What a joyous occasion, right? Wrong! Don't get me wrong, we were thrilled to be expecting but the news we got shortly after turned our world upside down. I was desperate to know if we were going to have a boy or a girl but the day I heard "It's a girl!" I also heard "Something's not right.". My daughter, Aralyn Faith, had fluid on her brain. I researched and learned that tons of "normal" people live "normal" lives with hydrocephalus so I thought I could handle it. Aralyn Faith was then diagnosed with a rare chromosome disorder called Trisomy 8 and Agenesis of the Corpus Callosum after an amnio and fetal MRI. Sitting on the cold, plastic chair, fists clenched, I was told that my daughter would never live. I had felt her, named her, talked to her, carried her and then had to plan to bury her. My first thought was that they mixed up my labs with someone else. No one in Matt's or my family has any kind of disorder, especially not chromosome related. But there was no mix-up. The lab results belong to me and my unborn child. My sweet, innocent angel was dying and I couldn't do anything to protect her. She was in my womb and I couldn't protect her. I had no idea my daughter was fighting a war all on her own. Matt and I were given 2 choices: terminate or deliver and watch her pass away.
On July 26, 2010 Aralyn Faith entered this world at 8:03am weighing 6 pounds, 2 ounces. She was beautiful! Her deep purple, blue eyes cut straight through my heart. I had to touch her, see her, smell her, kiss her. I knew she would be going home to her Father soon and I didn't think I could let her go. Hospice prepared me, family supported me, doctors informed me but once I saw her, I could no longer except her fate. My recovery room was flooded with family, friends, and church family. Everyone got to see the "Miracle Baby". News traveled fast in the hospital. I remember looking at the clock and it was 9:27am. Over an hour had past and it was surely getting closer...closer to my daughter's death. Our room was lit up with flashes. We weren't expecting much time with her but we were going to have every single moment captured.
24 hours went by and Aralyn was still with us, on the third day she was with us, and went home with us. That moment is when we all realized that maybe, just maybe God was not ready for her yet. We brought her home to an empty room. Why decorate a nursery when I was going to come home without a baby? A few close friends turned an empty room into a beautiful nursery in 2 days. And then I cried.
I had a terminal baby in my arms, in my house. What was I supposed to do? What if she died? Who do I call? 911 is to save the living. I was terrified. I was empty. Everyone prays for a healthy baby and some even wish for a certain sex. All I wanted was a living child. Hair color and the number of fingers she had didn't mean anything. I just wanted her, prayed for her to breath. In and out, in and out...I never knew a child could be born without that ability.
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