Happy Birthday!!!!

What??? Aralyn Faith is ONE! My daughter, the one who wasn't supposed to live an hour, is ONE! She made it!!! I am one thrilled, proud Mama right now. One year ago I was laying in a hospital bed holding Aralyn, watching the clock. We were never supposed to leave the hospital with her. I was supposed to go home with a swollen belly and no baby. We were supposed to go home and move on with our lives. God had another idea. I can sit here and say that doctors don't have a clue as to what they are doing, but then I would be wrong. They do know what they are doing medically speaking, they just aren't God. He is the only one to decide who comes Home and when. He wanted us to have Aralyn for a year. If He didn't she would be celebrating her birthday in Heaven. I'm so blessed to have her here. I can't wait to watch her play in cake. I cry just thinking about everyone gathering around her to sing "Happy Birthday". She's still here! She is with us breathing, smiling, crying.
The day Aralyn was born, Matt and I woke up and found a cow in our yard. This happens quite a bit since we live on 40 acres with cattle, but on this morning it was funny. I actually thanked God for the good laugh. We were so stressed and scared that we weren't even thinking about having a baby that day. All we could think about was losing a baby. At the hospital we laughed, crying, and laughed some more. Nurses came in to go over our Birth Plan, family prayed with us, and when Dr. Zeid showed up the world stopped spinning. It was time. We had to face the facts. Aralyn was going to be delivered and we would say good-bye. Things were looking bad from the minute I rolled into the operating room. During my spinal my leg twitched off the table. He hit a nerve. Then, after what felt like forever, I still wasn't numb. That little nerve that was hit was causing me to feel everything in one spot. This is when I found out about a "hot spot". I had complete feeling in one section of my stomach. The nurse let Matt and my mom know that they may completely sedate me. That was not in my Birth Plan. I wanted as little medication as possible. I wanted to see, love, and enjoy Aralyn as much as I can. The solution was for one nurse to keep her hand over this "hot spot" during the procedure so it wouldn't get touched by anything. Worked for me as long as there weren't any slips. At 8:03 am Aralyn Faith came into the world at a beautiful 6 pounds 2 ounces and 19 inches (all legs thanks to her daddy). Shortly after going into our room I had an allergic reaction to the pain medication. Then while Matt was changing Aralyn's diaper for the first time she stopped breathing and turned blue. It was one thing after another. As family and friends poured in to meet A, I realized that it was all worth it. The "hot spot", splotches all over my arms, everything. Every person who was there to meet our angel before she passed was touched by her. Now a year later I realize that every doctors appointment, therapy day, sleepless night, hospital visit, it's all worth it. Aralyn has touched more lives in one year than most do in a lifetime. She can warm the coldest heart with a single smile. She is a gift. A beautiful, special, blessed gift. I am the luckiest mom on earth. I was chosen to be her mom. God and Aralyn picked little 'ol me. I never thought I'd actually live my life as if each day were my last until I met my sweet princess. She has given my life a whole new meaning and I am so blessed to be able to share her with everyone I meet. Thank you, Lord. Thank you for blessing me with Aralyn Faith.

Another reality check.

Simple days like today are my favorite. Aralyn had a wonderful day. She didn't have any doctor appointments or therapy. All we had to do today was PLAY! She was even awake for a few hours. :) Today was the best day we've had in a few weeks. I thought it was going to be a tear-free day until I started driving down our road.
Not far from our house is a cemetery. I usually pass it and admire and all of the flowers. No matter what time of year, it's always well manicured and there are tons of flowers. I pass this cemetery at least twice a day, once leaving and once coming back. Today was no different until I noticed a lady sitting next to a headstone crying. She looked so vulnerable. Matt and I talked about burying Aralyn at this cemetery because it is always so beautiful, but today I realized that while it looks beautiful to the passerby, it's full of sadness to others. This is when the first tears of the day started flowing. How do you decide where to bury your child? How do you know if it's the perfect place? I know she'll be in Heaven, but physically I want her to be in a perfect place. We've also decided that we'll need to buy 3 plots so Matt and I can be buried next to her when the time comes. I thought about 4, but Rhagan will probably want to chose his own place. By the time I got home, reality pulled me back in. I've never quoted a burial plot. I never thought about how much it would cost. Let me tell you, they aren't cheap. This cost alone has made Matt want to pre-plan like we had talked about. Why does it cost so much? Don't these people realize that the majority of deaths are unexpected and most people don't walk around with a few thousand dollars in their back pocket??? It's the same way with many other things. I can buy a toy for $5 and spendd $45 on the exact same toy with "special needs" on the package. Why is the world like this? Why take advantage of people when they are in their weakest moment? I guess it's one more thing I'll never understand.
OK. I'm done venting for the night. I try not to do it, but I felt the need tonight.

Heal me, O LORD, and I will be healed; save me and I will be saved, for you are the one I praise.
-Jeremiah 17:14

This is real.

Today is the first day of the rest of her life. Aralyn Faith is now on Hospice care. Her case manager came out today to re asses her and to go over our options. We can watch her suffer and hurt or watch her rest comfortably. Today reality set in. I've done this for about a year and a half now. I've gone to bed every night for over a year praying that she is still with us the next morning. I've begged God. I've yelled at God. I've even questioned God. Today I accepted His plan. I know I've said that before but today it hit me. Aralyn has been on loan since the day she was born, but I'm not ready to let her go. I selfishly ask Him for one more day, every day. How does a mother cope afterwards? I have been a "member" of a group on Facebook for some time now where a little boy was diagnosed with a terminal cancer. As he and his family went through his final days support poured in. People from all over the world were praying for him and his family. Aralyn and our family are experiencing this same thing. What hurts my heart is that now that he has passed, everyone has disappeared. There aren't any new posts encouraging the family. He died and the support and prayers stopped. I'm really scared after seeing that. Is it selfish to want prayers? Right now I wake up and look forward to seeing Aralyn touch the hearts of hundreds of people. I read every single email, post, comment, and message. It fills my heart with joy to know that while I'm hurting, people are celebrating Aralyn's life. What will happen when she does go Home? I told you I'm a "what if" kind of girl. I could not have made it this far, this strong without all of the support. It's setting in. Aralyn will not outlive me. I will bury my own daughter. I will be in that "club". I received a message last week and I'm pretty sure it was by mistake. It said, "Hey! Have you heard about that little girl that's dying? I've never known anyone who died. It's kinda interesting.". My response was, "Yes. She's my little girl. Enjoy.". I didn't know what else to say. This isn't a show. This isn't for your entertainment. This is REAL. These words are RAW. This is a mother trying to find her way. This is a mother/daughter/sister/wife/friend trying to figure out what to do next all while holding her head high with a smile on her face. This is me! For every hurtful word there are 579 "friends" to help pick me back up. I will be forever grateful for that.
A dear friend, amazing photographer is holding an auction to help with Aralyn's medical expenses. Our church held a fundraiser at the beginning of the year but Aralyn's needs are still going strong. I am in awe of how many boutiques donated items. I am in awe of how many people are ordering "Aralyn's Journey" shirts. I am in awe of how many people care!!! I'm just so darn thankful and one day I will find a way to express that.
Lord, Your love is shining bright!

I'm rubber and you're glue...and your words hurt!

I don't know if I can or should keep doing this. Matt tells me daily that I'm too nice. He says I shouldn't smile at people because they might get the wrong impression. He is worried that I will get hurt one day because I'm the type to carry on a conversation with a complete stranger. Yes, I give the homeless people on the side of the road money. Yes, I smile at everyone that passes me. Yes, I wave at people who cut me off in traffic. Yes, I like to think that I'm a nice person. I started this blog to keep my family and close friends updated with Aralyn. Then, one person shared with another who shared with another. I figured it would be a wonderful way to raise awareness for Trisomy 8 so I started posting new entries on my Facebook. Never once did I think that I would start receiving hate mail. I'm a small town girl. I'm not protesting anything. I'm not into politics. I've never been to jail. I'm just typing and being slammed for it. I don't force anyone to read my blog. It's there for those who want to. I may not be the perfect wife, mother, friend, or Christian for that matter but I'm a person with a heart. Please don't judge me for my choices or bash me for my daughter's journey. We are all here to share God's love. Aralyn Faith is a miracle, a true gift handmade by God. Please keep your ugly thoughts and words to yourself. Like Mama always said, "If you don't have anything nice to say, don't say anything at all.".

She is the reason I smile and say God Bless!

My little Princess.

This just sucks!

What a stinky week.
Tuesday our preacher came over to talk to us about Aralyn, how Matt and I are, and her funeral. Do we pre-plan? I am a planner. I thrive off of structure. I never once thought to ask Matt what he felt about planning Aralyn's funeral, but Bill did. My husband is the quiet type. He has to know you atleast 6 months before he'll even say hi to you. He stands back and watches the chaos of the world. He's not one to jump in and take control. When Bill asked how Matt felt about it he said he felt like planning would be giving up on her. I never thought of it that way. My heart broke for him because I didn't know he felt that way. After talking with Bill, we both know that planning isn't giving up, it's being prepared. After Bill left Matt and I talked...for a while. We both agreed that planning would be best for us but where do we start? What do you do first. How do you plan a funeral for your child who is sitting next to you living!!! Aralyn was smiling and watching as all of this unfolded. We chose a funeral home and a cemetery. That's as far as we got and that's all we can handle for now. I called the funeral home to ask about caskets and they informed me that they don't have her "size" in stock and would need about 4 weeks to order. WHAT??? First off, it's not a pretty little dress so don't use the word "size" please. Secondly, I doubt God is going to whisper in my hear 4 weeks in advance. Matt doesn't want anything to do with the picking of the casket. I understand that because I don't want to either. But it has to be done. The thought makes me physically sick. What music will be played? What will she wear? What will we wear? How many people will be there? What will we say? How will we act? The questions are neverending. I'm terrified. I've NEVER been so scared in my life. How do you lose your child? I know she'll be in Heaven waiting on me but how can I stay here until God calls me Home? I had someone say that their daddy passed away and would make sure Aralyn had her bow on and would push her in a swing. I bawled. I sobbed. It melted my heart that she would share her daddy with Aralyn until I could be with her again.
Through this journey I have learned that there are still many, many good people in the world. You may not read about them in the newspaper or hear about them on the news but I can say first hand, they are out there.
Wednesday was a beautifully bad day. Blink of an Eye Photography took Aralyn's ONE YEAR pictures and they turned out amazing! Then, we took A to the ER. Shortly after getting home from the shoot she started vomitting. Her Neurosurgeon said to expect that. Because of her brain deformities, she can't control her bodily functions. Within an hour her temp was 102.9 and her average is 97.4. We knew something was wrong. When we got to the ER they took her straight back since her oxygen was at 84 and she was trembling. 6 sticks later an IV was placed. She was barely awake and her heart rate was 194. After a x-ray and diagnosis the doctor said he woul give her a round of antibiotics then send her home. About 45 seconds after we walked out, the vomitting started and she went into a complete seizure. Only twice has A had a seizure with convulsions. Needless to say, she was admitted. The rest of the time it was pretty standard until her doctor came in asking about a DNR. Our first thought was "Is this it?". He wanted us to be prepared if she coded. We signed it. I cried. I felt horrible for me brother-in-law who also signed. Does he know what he's signing? Does he know that if something happens to Matt and I, it'll be up to him? Our family should not have to worry about these things. It sucks. Bill, our preacher, said it's ok to feel that way and that's been my motto all week. This just sucks!
Aralyn is home and doing well. At night she is still struggling with her breathing and her vomitting is come and go but she is here, smile and all. That smile of her's can really turn your world upside down. She knows she cute and I love it.

How do you prepare?

I can't think of a single time in my life when I was at a loss for words, until now.

I called Aralyn's Neurosurgeon, Dr. Weprin, today. I wanted to make sure I understood everything he had told me Wednesday and I had two questions to ask. I knew the answers, but I prayed that he would give me something different. My first question was, "Is Aralyn terminal?". His answer was simple. "Yes." The second question I asked should never come out of a parent's mouth. It just shouldn't. "How long does she have?" His response was, "Whitney, I try my best to distance myself from my patients. Your daughter has pushed passed that and found a place in my heart. I can't give you an exact date and time, but you need to enjoy her while you can. I suggest you start planning. She is here now so live like she is, but prepare yourself for when she's not. Make the necessary arrangements. It's going to be difficult but it has to be done."

My heart hurts.

How do I prepare? There's no class for it. There is "Breastfeeding for New Moms", "Diaper Changing For Dummies" but no "How To Prepare For Your Child's Death 101".

This picture always makes me smile. :)

We are thankful for 1 part of her brain that's damaged. She's not capable of processing emotions. She is always happy! :)

I asked for the truth...

Aralyn had an MRI in Dallas today. She's had 2 before and both times we were told the same thing. She has hydrocephalus(fluid on the brain) and 3 parts of her brain didn't develop. Pretty textbook diagnosis. Today we met with her Neurosurgeon, Dr. Weprin. When we first met a few months ago he asked what I wanted from him as Aralyn's doctor. My answer was pretty standard. Honest, upfront, informative. I got all three today. A didn't have problems during the procedure so I assumed the hardest part was over. Little did I know. Dr. Weprin came into the room with A's results and a counselor. Talk about knowing something's not right. None of Aralyn's brain is formed properly, several parts of her brain have "cell masses" attatched to them, and there is more fluid than expected. Those 3 things don't sound all that bad but when you break it down, it's horrible. Aralyn's corpus callosum is nonexistent. It never developed and it never will. The part of her brain that retains knowledge/information is extremely underdeveloped and covered with extra cells which keeps it from working properly. I could go through every part of her brain that is affected but it would be a never ending list. All major parts of her brain are damaged, underdeveloped, or not developed at all. Today we were given a reality check. Aralyn's brain cannot support her body. As she gains weight her body will start shutting down. I was told that because of her brain deformity and the severity of it A will never walk, talk, sit, crawl, eat on her own, be able to control her bowels, maintain good oxygen levels, etc. Dr. Weprin gave us a clear picture of what to expect but I won't go into detail on that because I have a hard time thinking about it. He did say that it can be compared to a patient with brain cancer. Aralyn is expected to suffer and experience a lot of pain. That is where it is hardest. She is so pure, sinfree, and precious. I know that once she is Home she will have a perfect brain and will never feel pain again, but until then all we can do is pray. Dr. Weprin said that the first signs of this process is the inability to maintain oxygen and vomitting and she is already struggling with both of those. I don't pray for her to be healed, I pray for her to be comfortable. God will heal her when the time is right. Thank you to each one of you who have let Aralyn into your heart and continued to pray for her. Her journey did not begin with her first breath and it will not end with her last. She was loaned to me for a reason and one day I will know why. Please feel free to send me a message at AralynFaithvsTrisomy8@gmail.com if you would like to know more.
Blessings!