Thanksgiving

Hello beautiful souls,
I hope all of you have been enjoying your families today, and eating tons of good food obviously. Today is a day of reflection of the things most important to us. Over my journey this past year and a half I've started learning to realize what's most important and what I am thankful for. My family, friends, food to eat, and a home to live in. I can go on and on of things I've started appreciating more and more. But, today is slightly different, and deeper than the usual. 

Today, I stopped and reflected once again. What am I most thankful for this thanksgiving without my baby? I've thought about this all day and it finally hit me. I am thankful for my body. This vessel  that holds my soul. This body has been through hell and back and yet, she's still standing. My body grew, carried and delivered my sweet warrior. The place Adalynne loved the most was right on my chest. My body fed my baby for 4 months out of her 9 months alive. This vessel survived nearly dying at 18 in a car accident. And even, multiple surgeries throughout its short existence. 

It's full of scars and stretch marks and will never be as skinny as I want but, I'm healthy.
My body and mind are healthy in a world full is disorders and disease. I would have traded places with my baby girl in two shakes of my hips, but life doesn't work like that. We get what we get dealt and we can't control what our hand will be. I was able to open my eyes, get out of bed myself and go cook breakfast this morning.  Some people can't even do the first of those listed. I'm so thankful for this body and how much it amazes me each day. I'm proud of the progress my body has made and the differences since having my sweet girl. I'm thankful for all types if things each and every day but, today I'm thankful for me.  Thank you body for allowing me to sob on the floor and then push myself up, wipe my eyes and carry on with my day. These moments of weakness followed by strength keep me going. This body gives me hope for the things I can do tomorrow. 

Enjoy the rest of your night with your family and be careful to the shoppers that are about to be out n full force. And, love yourself a little today when thinking of others. Sometimes we overlook ourselves too much. 

All my love readers,

You guys are freaking amazing. 

Purple dress

Hello all my fantastic readers,
Today has been a pretty good day so far. In my happy mood I wanted to share a story with you all that I don't think I've ever mentioned on here. Adalynne's purple dress. Some of you might remember last year we had some wonderful and very close friends get a spaghetti dinner benefit together to help raise money for us (thank you to the Nichols family and friends and everyone who came out to support us. I love you all so dang much.) The family gifted us this purple dress that was so beautiful I obviously cried. We took this beautiful gift that was too big for her tiny body but perfect for pictures to our beloved friend Deborah Hendrix. Deborah is an outstanding photographer that did pictures of Adalynne from birth to hospice. (Another huge thank you and big hugs for her.) These pictures of Adalynne in the beautiful purple and white dress were stunning. I cherish them along with the others each and everyday. As I type this I'm starring at the very picture that sparked this blog today. Fortunately for me and my family Deborah worked with the funeral home after Adalynne passed. She took one of the pictures of my sweet warrior and used it as her portrait for her funeral. It now sits on our mantle for all to see her beautiful face, in the sweet purple dress.
Right after Adalynne died, mom and I were shopping for candles and jars for her Celebration Of Life. We were both becoming overwhelmed with emotions and decided to go ahead and check out. Standing in the line with a cart full of things for my baby's funeral I glanced over at a shelf and saw a cabbage patch doll, with that beautiful purple dress on. I stopped and grabbed mom and pulled her over. We both starred at the blonde hair green eyed little doll, in an exact matching purple dress. Then our song came on over the intercom of the store. Fighting back tears I told mom she had to get the doll. This was Adalynne's way of giving mom her own bear to hold.
All my life my mother has loved cabbage patch dolls. She has a lot of them put up in boxes for years now. But, I used to play with some of them when I was little. Once we came home, mom found a red headed blued doll and put the dress on her. A perfect fit for our sweet warrior.  Now, we have our sweet baby to look at and cuddle. In that beautiful purple dress.

It's funny how the little things can make our day to day life so much easier. I thank my warrior everyday for showing us her light and love.
Hug your babies and loved ones tight, tomorrow is never promised and each breath is precious.

Until next time beautiful souls.

All my love.

Tip toe, tiny steps.

Hello readers,

It's been a while since I've wrote on here. I was at a standstill point with my grieving. The blow from the organ donation hit me hard. I lost the only purpose I ever had from loosing my sweet baby girl. I needed to regrieve loosing her....
again...

Naturally I did what I always do. Focused on my family and finally myself. Recently, I've lost several people in my life I thought I couldn't be without. I'm doing just fine, and, even better now honestly. I have clarified to myself that I am the holder of my happiness. Luckily, I have a superb family as well for the times I need a pick me up.

Have I said how much I love Flordia? I'm not sure if it's the sunshine or that two of my favorite aunts were in the same continent together, finally! There are few things that makes me as happy like being with my cousins and aunts do. And, I even got a LITTLE tan. I'm about .05% of a slight darker pale then I was. But hey, I'll take it.

I have also found a hobby I have obsorbed myself.. (and my family hehe) into. My greenhouse!!! I love growing plants, it gives me such joy and satisfaction watching them grow. I have lots of different vegetables growing currently. Along with a few flowers and aloe.  They all seem to be doing amazing. During Adalynne's Celebration of Life service I had a lilac bush in her honor. Once I got it home it did extremely well and then suddenly started to die. I tried several different things with no luck so, I thought I had lost the plant completely. But then, the day I got the news Adalynne's heart valves weren't accepted I walked outside and cried on the porch. Once I stopped I looked over and, saw her plant had grew all new leaves. Tiny, vibrant green leaves encapsulated the once bare branches. The most beautiful sight and I knew she was telling me in her own way things would be okay. It just took me awhile to accept it.

Yesterday, was a huge day for me. I finally, after almost 6 and a half months took my Warrior's last box of clothes and things out of my room. It took me awhile and I even layed over it crying uncontrollably. I clung to it like it would bring her back. I dont know why, maybe i thought if i just kept them in here she wont ever have to "go". But, shes gone and it sucks. It doesn't ever get easier, I just have learned to let those emotions happen and then, breath and go on. Regardless of what is going on around me I still feel the pain in my heart each day. Saying I miss her is an understatement now. I see her each day in the sky and feel her once more on my chest. I think she would be proud of me as of recent. Things are finally starting to look up, and I'm looking forward to seeing the veiw from the top for once. We are warriors are we must go on.
Thanks for keeping up with me. And, as always, stay beautiful sweet souls.

Avacado.

One year has passed since Adalynne's brain surgery. I remember being so nervous I couldn't breathe, just kept pacing the cafeteria of the hospital waiting on a call to say things were okay. Once she was finally out of surgery, I was able to go back and see her. My heart was beating so fast while my brain ran 500 miles a minute with questions and hopes of things getting better. As I approached my little babe, I noticed she was covered in iodine, with tubes and IVs coming from all over her frail vessel. Her head was sunken in from the water loss and lack of brain matter. I lost it, big huge sobs escaped my chest and voice box. I apologized to the nurse for my abrupt sobbing. I had held it together for long enough. She made it through and I was so scared she wouldn't.  Her body was so limp and sunken but, her face, oh that sweet face looked so peaceful and rested. I settled down took some huge breaths and talked to my girl.

  After recovery they moved her into the PICU of Baptist hospital. My famuly and i, along with Adalynne's father sat in the waiting room and went over every word her doctor told me with our family, looked at the pictures of her empty skull and felt internally shattered. Nothing would ever help my baby. Even the surgery was for temporary relief and only to make her life more comfortable. It also, confirmed the severity of her case. While waiting in the PICU I was greeted by her nurse who informed me that Adalynne had just had a 5 minute seizure followed by breathing complications so, they put in a nose trumpet in to open her airways. We learned over the course of our hospital visit that Adalynne had been having lots seizures her whole life. Hers just came in a different form than most, no flailing or anything of that sort just staring off on one side. This meant that she had been having at least 5 to 10 seizures a day, news that was very devastating to me and my family. I felt like a failure, like I had let her down. We had went two months of not knowing and I felt that I could have done something to help her..

   The first time I picked her up after her surgery was one of the craziest moments of my life. I carefully scooped her into my warm embrace, while weaving around the IV's and monitoring tubes then, finally settling into a rocking chair covered in warm blankets because we could not keep her body temperature at an appropriate level. I could feel the water in her head slosh from side to side. This movement turned my stomach into something similar too two octopi fighting. She would just moan these tiny little moans of pain during movement crushed every part of my soul. But once she settled into her mommy sweet bliss for us two. I sang All Of Me to her like, I always did. That moment in time stood still for me. I can sit here, close my eyes and feel that moment again. Moments like this, are the avacado to my life.

Adalynne though, had utterly no desire to eat. I tried and, I tried but she just didn't care for it. Of course, me being me refused to let her leave the hospital until she was eating again. Once she started to the surgery had set us all the way back to the beginning. She had to relearn how to eat just like we did in the beginning of her life when she can suck. We went from a spoon to a syringe and then finally back to a bottle. It took twice as long for her to learn this time, and most of it just came back up unexpectedly at the most inopportune times.

   Over this visit I met some outstanding people. It was one of those moments I truly realized the impact of our story and the amount of love that we had behind us. For those that have kept up with my blogs or, the ones that are new to my story that have gone back and read, you all might remember that I asked my readers to wear blue the day of her surgery.  Adalynne diagnosis was hydranencephaly but, she also had hydrocephalus as well. Her hydranencephaly was the reason she had to have the surgery. September is a month dedicated to hydrocephalus awareness. Hydrocephalus causes excess water on the brain.  To bring awareness to this situation that many of our citizens are faced with and to have a little bit of support during my tough day my friends and family were to wear blue for us. To all of you that sent me pictures and posted raising awareness and sending love, I have to say thank you. They were the reason I got through that day. When I started to feel like I was breaking it was so wonderful to be able to see we were making a difference and bringing people together for love. Thank you all so much for the support and continued love.

It's been one hell of a year since that day. Looking back this was a huge moment for us, another game changer. I'm thankful for the lesson I learned through that time. My strength reached a level I didn't know possible. You all had a huge part to play, still do every day. Thanks for reading my heart on pages. I love you all beautiful souls. Give a loved one a extra hug, just because. Much love.
Until next time.

Heather

P.S. 

I know of others who sent me pictures I just can't get them currently. My laptop crashed with all our pictures... thankful for Facebook today. 

Questions

4 months have come and went without you. I miss you more with every breath I take. I am still struggling with day to day life. Even today, I found myself staring at the baby clothes in toys r us holding my tears back then, Gammie reached for my hand and pulled me away. Tears came pouring from my body in response to my heart aching to feel your skin again. To give your sweet cheeks all my kisses. To wrap you in my arms and feel the weight of your head in my hand as I gently cradle your teeny body into my safe embrace.

Another few days have passed without you. And I found myself sitting on a bed crying after all the children had left the party. When will this get easier? When is this going to stop hurting so bad? I...I don't know. When will I be able to see children laughing again and not wish for my own? When can I enjoy life once more without feeling completely empty? I don't know, I have literally no idea when this will become any easier. I doubt it will. How am I going to find a new purpose for losing you? How do I make this better,  I don't know. That's all I can come up with these past days, I don't know. I don't know when I will get my life back, or when my car will finally come out of the shop. I don't even know what I want for lunch, all I want you back. I want that more than anything I could ever get. I want to feel you again moving inside of my stomach, safe, sound and happy but we know we can't have anymore. I don't know if I'll ever be okay I'm trying to get through every day the best I can but it's a really hard babe.

It's now been 5 months... I can't seem to finish my writings these days. Still feeling lost and now, I'm told I'm being "too sad." I don't know how else to act. How many people do I have to act fake around? I have lost all the positives recently. I don't see the rainbow after the storm.
I always see a rainbow.
I always find the silver linings.
Why can't I now?
.....
....
...
..
.
Why didn't they take your tissue? That was our purpose and I feel like I let you down. Maybe it was something I couldn't control, maybe not. I'm so sorry baby. I know you wanted to donate as much as I needed to have a silver lining. I don't know what to do now.  What was the purpose of losing you? How do I pick up the pieces of my life when they burned them?
I just have questions now.
I use to have answers.
But now,
Only questions with no response.

One day at a time, right babe? Deep breaths and hugs to get through the days and nights.

I'm trying my best.

Love you always,
Mommy.

Broken glass

Hello all,
I have been thinking of what to write for my next blog and was happy to report I've been doing much better! Things seem to slowly be coming together for me. Slow progress but, progress nonetheless. Been spending much more time dealing with my issues and have found ways to help that. Some of which has come in the form of isolation, I'm okay with that. I am happy to say I'll be running a 5k in honor of Adalynne this weekend. I've been preparing for a while now which has helped my depression. "Working out" sometimes seems like a chore we must do that leaves us sweaty and sore. If you change it to I'm going swimming, biking, hiking, or dancing then I am so down! I've seen a lift in my mentality and have to say overall been feeling slightly happy.
Then I open the mail this morning. A letter from Carolina Donor Services has never daunted me until now. Another "wam pow blow to my ever fading heart and soul."

After extensive testing and evaluation we are sorry to inform you Adalynne's tissue isn't fit for transplant.

My one happy ending. My one hope and dream. My chance to help another mom never feel this pain or a child to die. 3 to be exact. She had the opportunity to help THREE BABIES. I am utterly crushed and devastated. I have clung to this donation since she was born. I met with everyone and talked to all doctors to find out the most information I could to do the best by her. I went through phone call after phone call answering all their extensive questions. And every few months I had to go through  the "just checking on things" phone call. And I'd answer no, she isn't dead yet and think "wait your damn turn". AND NOW THEY DON'T WANT IT. They can't give me a answer as to why they won't accept it. I got an answer of anything thing from her lab work and charts to human error removing the tissue. I'm so fucking angry. I'm so fucking hurt. I have cried all day... I don't even know how to breath currently.  This was my one silver lining. I would say "oh, if we can help save another mother this will all be worth it to me. All the pain, and tears will be worth it to know she saved another life." Now, I have nothing but a pat on the back and a thanks for trying medal. I gave them a piece of my daughter and they are gonna thrown it away like trash. I've never been more devastated in my life reading a letter. All my efforts and hopes thrown away.... and the opportunity to save someone is gone.

Today I am

Shattered.

Bless

Today I am so incredibly thankful for Carolina Donor Services. I received information today for Adalynne's heart values and tissue that was donated. I hope one day I can reach out to the ones that received our donation to tell them about our sweet warrior. How brave and strong she was and so beautiful. Even though opening a package from them is bittersweet I am so blessed that we were able to hopefully save three babies and three mothers from ever feeling the pain I go through each and every day. This package, this opportunity, is makes it all worth it to me. I hope this will help a family someday. Until then, thank you all for your vast amount of support and love. And for the positive feedback I receive from you all. It keeps me going on my bad days.
My life has been a whirlpool of devastation for two years (longer probably). It seems as soon as I start to stand firm and strong it blows me right down again. I've learned that I can put one foot behind me to lean on when those blows happen. Even if I fall, I can get back up. I do not know the correct way to go through life. I do know that I've been through hell and back and watching my daughters last breath escape her frail body is the bottom. I do not claim to be a perfect person or to go through life happy-go-lucky. I am human. Life is hard. I do not ever wish to spread negativity but people must realize life isn't all ice cream and glitter. Sometimes your cookies burn, ice cream melts and, glitter gets in your eye, and all you can do is cry in an ice cream puddle to get the glitter out. That is okay my friends. Be angry, or sad, or happy. Always remember this WILL pass.  You are strong and bold and unique. I am not here to shine bright like a diamond, because they need to be cleaned too. Not many people really know all the blows I've suffered in my life and if you did you'd look at me like they do.. (wow, you're still standing here smiling) Sometimes, my buns too tight and I'm mean and angry at everyone. I'm sorry, but that's me right now. I wish I could take these feelings away and be strong and happy every second, but I cant. I have accepted the facts I have severe mood swings. Thanks to the pamphlet from the funeral home I learned it's called grief. I stayed positive and strong for a long time with a half fake smile on my face for my daughter. I miss her more than anything in this world. And I'm fucking angry, I want to scream how not fair this is. What did I do to deserve this?!?! Why, why, why!!!!!
The answer is nothing. The voice of her neurosurgeon pops into my head "heather, you can list off all types of things, I'm still going to look at you and say it's a freak thing that happens. A one in a million chance." That's life, shit things happen to people with no reason why. I'd like to say "I won't let this define me" but, I will. This will forever define me as a person. When people ask if I have children I have to decide to answer honestly or lie. I am not a liar, I lost my baby. She was beautiful and very sick and is at peace now. I won't be okay and I'm alright with that. I've said from the start I will try to find and spread as much positivity in the big bowl of shit I can. I will continue to do that. Somehow, someway I'll find my way again. I'll stand tall and make her proud. During this time I will allow myself to feel what it needs to and accept and honor myself and my family(including friends.)
Thank you all for loving me unconditionally. I have learned some can't handle my negative days. These are people I do not need in my life. Please let me be hurt and sad and happy when I am. I don't need to feel like I'm grieving in some wrong way. I don't know what I'm doing, I'm just trying to get through life the best I can.

Stay beautiful, loving and kind my readers.
All my love in the world
-Heather