Monday, December 26, 2011

This Time Last Year

Last Christmas was Max's 1st Christmas. We had so many visitors and hundreds of Christmas gifts. My mom and siblings brought their Christmas to the Ronald Mcdonald home, and we had Christmas there so we could all be with Max. His crib and his room was completely decked out in new toys, new blankeys, pictures and all! He had such a great first Christmas and managed to stay awake for so much of the day! All of our family came up, everyone adjusted their plans to be with our bubba! We are so thankful to have had such awesome family and friends to be with us while our little man was struggling to stay alive. Not one of us would have thought that he would be gone just 3 weeks after Christmas...

On December 27th, 2010

We had a big meeting with some of the top specialists in the world that had been working with Max and studying his body since we arrived at Hope Children's Hospital in Oak Lawn. They sat down, and slowly explained to us in a long drawn out process, that our son was going to die, and that it could happen in a few years, or a few months, and that he had a 30% chance of living to be 6 years old. I remember how devastated we were. Ron and his mom were in shock, and me and my mom just couldn't stop balling. I couldn't believe it. I was so sick I wanted to throw up I just could not handle it. In my head, I just told my self I would kill myself too. We thought we would at least get a few more months and years with him, and that we would do everything with him in that short time. We would go on a vacation and just do everything imaginable with our baby. We didn't think his life would end in a few weeks. We were told that we would prepare to get him healthy enough to take him home and have home hospice care and a 24 hour nurse. We thought that was the worst of it. We didn't think that he would not even be able to come off the ventilator. He had been working SO hard for so long. His poor little heart just couldn't do it. I am so incredibly proud of him for making it and living as long as he did. He was always so happy and everyone could just tell how special he was. Even before we knew he was going to die, he was different, he was so special, and gave you a special feeling.

Anyway, I don't remember much about this day. I remember the pain, and how devastated and sick I was from that moment on. I would take a nap in an upright position in the chair next to my baby's crib, and I would wake up and just scream! When I slept, I didn't have to be in the real world where my son was dying. I felt so horrible for sleeping so much after that news. I just couldn't help it. I just remember that part I hated was waking up to my reality, and realizing what was real all over again and just random moments of overwhelming tears, fear and devastation.

So after this news, we decided that we would prepare Max for an open heart surgery that would temporarily relieve the pressure in his heart. They tried to tell me that he may not survive this surgery, that he had a 10% chance of survival, but it wouldn't get through to me. In my mind, I couldnt handle any other way, and I was only thinking about myself, my pain without my baby. I did know it would be so painful for him, but it was just too painful to even think about letting him go with out trying this surgery. It was painful for everyone. There was no solution. Max became everyone's everything. and we lost him. and the thought of losing him before we lost him, and being told we were going to lose him, was the most devastating, painful feeling in the world. We had no control.

Sometimes it seems like the days leading up to the day we lost him were so much worse, and the news that we were going to lose him. I think that is because we had no preparation. My body had no idea what was about to be dropped on my heart that day of the meeting. I had no numbness. After Max passed away, my body has since, been numb. Sometimes it wears off. I don't take any sort of medication or use any sort of drugs. My body knew that losing my baby would be THE worst pain I would ever experience, and so the days leading up to him passing away, and after he passed away, I had built something. I dont know what it is but it allows me to survive. But I didn't have this when they told me he was going to die. So it was much different and so painful and I felt every bit of it. I am thankful for this numbness. It allows me to have a plastic smile and get through the day, with small moments of joy here and there. Underneath it all, I am the most devastated, broken person. But the numbness allows me to miss my baby in a graceful manner, vs. the howling, screaming moments in the middle of the night that I have when it wears off. Those moments are too needed and I supposed healthy for my grieving, but if I was in that pain all the time, (which I am, but my body takes over) I would be dead too.

Anyway, I am just so thankful for the time that I had with my precious little man. He couldn't have been a better son . He was so perfect. He had so much love to give. He was so different and special. I just love him so much and I am so sad and in so much pain because he had to go. But I also find it incredibly beautiful and amazing that he did what he was meant to do in this life, in such a short time. He brought so much joy in the short time he was here, and he still brings me joy. I just love this little boy so much and wish I could hold him again. My heart hurts, my arms hurt, my chest literally hurts. I want him here so bad. I just want to hold him. I just want him to be here and healthy but I know that I will have this one day. I am just trying to remember that this life doesn't last forever, but there is another one after this that does, and I will never have to feel this pain again. I can't wait to be with you again bubba! I love you! Merry Christmas sweetie! You are so loved! 

Sunday, November 27, 2011

Question and Answer

Will be doing a Q&A blog for clients, family, friends, and anyone else who would just like to get to know me better! :)

CLICK HERE to submit your question

Feel free to ask me anything about myself, my son, congenital heart defects, photography, my family, relationships, and ANYTHING in general.

I thought this would be a fun way for everyone to get to know me better and for me to share more about myself.

You can submit your questions via formspring. You do not need a formspring account to ask a question. You may remain anonymous or state who you are. . Look forward to getting to know everyone better! :)

Also, to keep updated on my photos and business updates, you can add my photography profile as a friend HERE.

Thursday, November 24, 2011

Stronger and Thankful

Happy Thanksgiving to all!

This time, last year, were the last few days we had at home with Max. On this day, he was just starting to get sick, but he showed no signs or symptoms until later this night. We spent thanksgiving week at Max's grandma's house, and just had a relaxing, laid back week! Here are a few photos of our boy on Thanksgiving, 2010!

 Me holding Max's meds lol Look at daddy's hair! LOL
 Max getting mad at momma!
 Max admiring gramma!
Me, Max's daddy and Max's aunties
 Little man, gramma got him this cute lil outfit!
 So mad! Maybe poopin? haha
Gettin so mad, momma get off me! haha

As many of you know, the last three months have been some BUSY months. I can't believe I love photography this much, and am changing my major!

I feel like photography has helped me grow even stronger. My little man keeps me inspired, as I see him in everything. He is the beauty in all things. I see him in every precious child, in every sparkling eye! My Max is living through these children, and I am giving their parents something that I can only wish so badly that I had. I have so many beautiful photos of Max, but they are very difficult to print out, as they were taken with our phones or our old digital camera. We did not get a good camera until December, shortly after Max was intubated. The highest quality photos we have are the ones after he passed away. I don't mind hanging those up on the walls, they are absolutely stunning. I just wish I had a nice, quality photo of him smiling :'(

Anyway, my first few sessions were all little boys, around the same age as Max. All about to celebrate their 1st birthdays. I was so heart broken. I got angry and questioned myself, why am I doing this? This is only hurting me. Why do I care to give people photos that I will never get!? This only made me more jealous and angry that God took my baby, and didn't give me the thought or the resources to have special photos like this taken of my baby, when I was the one that was going to lose him! It was shortly after those moments of jealousy, anger, and devastation, that I realized... I realized this could be something good. I thought to myself, would I really wish this upon someone? To not be able to afford or find someone who can give them nice photos, and have them be left with nothing? Would it not be an honor to give someone photos that could mean sooo much more to them later on in life? Weeks later, I continued with booking photo sessions and my schedule for 2 months was fully booked! I had sessions nearly every day, some times multiple shoots a day. It was such hard work and I sure worked my ass off for making minimum wage(sometimes not even that). and I found that this is what I love to do, and that my little boy has given me so many signs and so much inspiration! I think this is what I am supposed to do. I still love and want to do nursing, but I have a few years to see where this road takes me, and for now, volunteer bereavement photography will help me serve and get my nurturing nursing needs fulfilled.

Today, I am not jealous of what beautiful, printed photos you may have of your children. But I am thankful that I have the privilege of capturing and processing them for you to have for the rest of your life! Thank you my sweet bubba!!!! Thank you for giving mommy such strength and encouragement! I could not have done this without you helping me!!!! I love you so much and I need you to keep helping momma and showing her the way!

I am also thankful to Amy Yonk with onsite photography, for taking our 5 generation family photos. Maddox was sick on this day, so we had to take him to a last minute doctor's visit, right before Amy arrived. We were rushed because of the doctor's appointment, but got back just in time for mommy to put some make up on and a nice sweater (notice the sweat pants) and take some photos of our family! You can view the photos here, and the password is Maddox (with a capital M)

I am also so very thankful for Todd Hochberg, who drove many miles and printed 2 whole photo albums full of pictures of our little angel, after he left his body! I could not believe the generosity of this man and the photos he took are simply amazing and beautiful! Maddox made a scary, sad thing, beautiful, and Todd captured that perfectly! Thank you so much Todd! You can visit Todd's website here and donate to help him with providing his services! I will be donating this Thanksgiving day, to thank Todd for everything he has done for our family!

(please do not save these photos to your computer unless I give you permission to do so)

So Happy Thanksgiving everyone! I will be going to a lunch this morning with Ron's family, and then we will be visiting Max, getting him so cute decorations for his resting place, and then we might stop and try to see Max's new baby cousin Ava! She is so precious!

 Yes, she has giant, super long feet!!!

Ron wanted to take her home LOL

Saturday, October 15, 2011

Pregnancy and Infant Loss Awareness Day

There are about 4.4 million confirmed pregnancies in the U.S. every year

*900,000 to 1 million of those end in pregnancy losses EVERY year. 
*More than 500,000 pregnancies each year end in miscarriage (occurring during the first 20 weeks). *Approximately 26,000 end in stillbirth (considered stillbirth after 20 weeks) *Approximately 19,000 end in infant death during the first month.
*Approximately 39,000 end in infant death during the first year.

.....Over 1,000,000 parents with empty arms in just the United States alone.

Break th
e Silence!

Today, I was so close to my son physically.  It hurt so bad. 

A woman from my area messaged me, after I had posted a status about infant loss.  She told me she had just lost her son at 20 weeks pregnant, and she did not get to see him. She only had two blurry pictures. Her son's service was being held by the same funeral home Maddox's was, and he was also being buried right next to Max! There would be one sweet little boy separating them. Three boys in a row. 

The fact that she didn't get to see him, and had wanted to, made my stomach turn! I immediately suggested if she wanted me to call the funeral home, to see if there was still time. She agreed, and found that her husband wanted to see him in the hospital, but was too afraid to upset her. They both wanted to see their sweet 6 inch angel, but did not want to hurt each other.  So they both kept quiet about their desire, knowing they may regret this decision forever.

I made the call and the director was very discouraging and unsupportive of the idea. There supposedly was "not much to see" or would be to upsetting to the family. He exaggerated the size and smell of chemicals on the little boy. I told them this family is so passionate about seeing their sweet baby before they lay him to rest forever, and that they wanted some pictures of him, and with him. We set up a time Thursday for them to meet their baby. I told them I would go in before they did, to get some pictures first, and then show them their son through the camera first, to prepare them for what they were going to see. They were so nervous, yet thankful that they were given this chance! I felt so honored to be there and experience that with them!

I got to the funeral home about 20 minutes before the couple did. The man was very rude, so I was thankful that he left shortly and left me and the precious angel alone to have a very private and precious moment. 

He had everything...

 This little boy had everything. He had fingers, toes, eyes, nose, a spine, perfect pink skin, everything! I could not believe the man I spoke with on the phone, had said there was not much to see. I did not hesitate to jump right in and get some beautiful pictures of this little man. I held him, I positioned him, and I then noticed his little cord was wrapped around his neck still... twice... My heart hurt! Why did the hospital not unwrap this? I could not let the family see him this way, so I made sure I had a few pictures of him with the cord still there, in case they did want to see in the future, and then I carefully unwound the coiled, pink cord from his neck. It was such an intense moment that I had alone with the precious little baby. Just 6 inches long, some how caught himself in that little tangle, which was what caused the end of his life here...

The family arrived and they were so thankful and glad to have seen him! They held him and admired his precious little features. They could even determine who he looked like! It was a beautiful moment, and I felt so honored to have been there. They thanked me and expressed how much better they felt after seeing their precious boy! and to think that they may have not had this opportunity, scares me! To think that so many others do not have this opportunity, hurts me! They had said that the hospital offered time after time for them to see him, but they were scared. But I am soo glad that the hospital kept offering, and asking. They did exactly what they should have! 

The mother suggested, "This must be hard for you huh?"  I told her not at all. and it truly did not bother me. From the moment I walked in, I was not afraid or thought anything but positive thoughts of this little boy. Death does not phase me anymore. I was not afraid to see or touch this little body. I felt nothing but honored and grateful to have been given this opportunity, to see such a precious, tiny little body and be apart of a life changing experience...

After the couple held their little man, before they left they asked me to come to the burial the following day, and photograph it. I absolutely agree'd. This was today, Friday, October 14th. I arrived and fixed my little man's toys at his resting spot. I looked at the little casket stand, with the green velvet curtain, and just lost it. I sat squatted on my knee with my camera, everyone else standing, hugging and talking, and just hoped no one saw my stomach convulsing with pain, and my face flowing tears. It was like at that moment, I felt every feeling I did not feel at my son's burial because I was so numb. 

The director spoke about Heaven, and a family member read a few beautiful poems, and as everyone started to head out, the family asked me if I would stay and photograph the cemetery men, burying the baby. I do not know how they do it anywhere else, but here, they do not bury the person in front of the family. Probably because it is just too painful. So I stayed. Everyone left, and the big crane came in with dirt. They uncovered the hole, and I told them that the family wanted some pictures of the burial. I leaned over them, and cringed as they revealed how deep the grave was. Just the length of a man's arm. They gently set him in the hole, just by leaning over. I looked down into the hole, knowing my son was that deep, and that he was right next this little boy. He was right there. I wanted to reach in there and grab him too. I couldn't bare to stay for when they put the dirt in, so I said thank you and left and just burst into tears. I got in the car and sat there, screamed and cried. I couldn't believe this was my life. That my little boy is but only 3-4 feet in the ground. I howled in pain and lost my breath and pulled over again. I was so angry!! For the first time I believe, I demanded WHY aloud!! WHY MY BABY!!! I gave myself the moment I needed, and pulled onto the free way, and continued on with my survival in this painful life on Earth...

Rest in Paradise Jaron Matthew Portner

I feel like there was nothing better I could have done, to honor my son, and all the precious angels that lost their lives too soon. Especially today being Pregnancy and Infant Loss Awareness day, and awareness month. Thank you to my precious baby boy, for being with me this week, and helping momma stay strong!

Maddox, you changed my life. I want nothing more than for you to be with me, or for me to be with you, but I can't have that right now. I struggle with my thoughts, and if I ever really will see you again, hold you again, and nurse you again. I have to believe it to survive. You are still my everything, you have been since before the day I knew of you. I am living these months, thinking, just last year at this time, you were HERE in my arms! I was soo happy. We had just came home and our lives were so perfect. and now I am here, where I never would have imagined. I just miss you baby!! Momma loves and misses you toooo much I can barely stand it some days! I love you sweetie!! Please keep being with momma and letting me know you are here with me still!!!!

Thursday, September 8, 2011

6 days

Less than 6 days to my little man's very 1rst birthday.

One whole year has gone by. I only got to live 4 months with him in my arms.
The remaining 8 months, has been miserable. An understatement.

I have been staying soo busy lately. It is good, but also bad.
I have a very strong distraction, then when I get some down time, time to think, it makes me so sick I can't even handle it.

Everyone is asking when Maddox's party will be. I honestly do not know if I will be fit to have a party.
I am going to try to put something together September 17th, for family and friends.

However, on September 14th, around 6pm, at Riverside Cemetery, we will be doing a balloon release for anyone who would like to come. Bring your own balloon! :)

I am going to get a fence and some rocks this week to place around and in his grave. I think that will also help with the fact we do not have a headstone for him yet. We ordered the small temporary grave marker, until we can afford a headstone. We honestly thought we would be able to afford one by now, but it is killing me that we can not. I eventually want to move him to a larger plot, with a big, upright headstone, but that is not an option right now. I hate it.

I have been in school for about a month now. I started August 8th, had a week off, and started up actual classes. It has been so hard. The CNA course covers so much of everything I already know, and everything I did with Maddox. Everyone is always talking about their kids, and today was finally the day I got asked about my child. Guess what they did, everyone ignored that I had even said anything. Turned their head, and pretended I had not said anything at all, and basically excluded me from the conversation about child birth and child care.
It hurts.

I am going to try to keep more up to date with my blog, I really need it. I need a special time to just focus on me, my feelings, and my little man. A set time to grieve. It has been coming out in twisted, unexpected, and LOUD ways.

I just miss my little man. I hate hearing about the heart, and what does what, and why my son's heart didn't work. and why it couldn't be fixed. and what he had to go through, and why he is not here.
I need him here. Right now, at this very moment, I should be in bed, with my son, snuggling, cuddling, and nursing him to sleep, then gently transferring him to his toddler bed, and tucking him in tight.

I should be going crazy, shopping online for all the necessities for his huge birthday party.

Anytime I tell anyone that I have a son, and that he would be one year old this month, and that he passed away when he was 4 months old, they shake their head, say that I must be so strong, because they couldn't handle that. AND I CAN!?!?!?!?

Some how I keep surviving.

Anytime Ron and I talked about if something like this were to happen, both of us would just say no, we would just die too. End of story, we would kill ourselves. There is no way we could live through this. There is NO way. We would just die.

And that was just our plan. The second I was told my son would be dying, and that he could not be fixed, and that he would be going very soon. My FIRST immediate thought, was how I was going to die too. How would I kill myself, just in time, so that I would not have to live without him for one second. I knew that I could not stand to be without him for even a minute! I had it all planned out. I thought out every different way carefully. I decided that the best way to go about it, was to jump off the hospital balcony. I had that plan, up until the day he passed away. This weird, life saving, numbness, came over me. and some how I was able to get through those first two weeks, and the moment my son passed away in my arms, by telling myself,

"He is an Angel now, he is too good to be here. He was too perfect for Earth. He fought so hard, he deserved to be pain free. He is in God's arms now. He will always be with me" 


the numbness wore off, and I howled painful, loud screams all through out the night. I would go through his things, and just sob. I couldn't stand it. I nearly killed myself 3 times within those first 2 months. Some how, I am here right now. Some how, I have to finish this life. Some how, I survived, some how I keep surviving. I do not know how, but some how...

When you think of someone suicidal, or someone who has lost someone so precious, the first thing you think of is, counseling. They need help, they need counseling, they need to talk to a professional...
EVERY ONE, kept asking me through out the weeks after his passing, if I had gotten any help. Professional help.

I will tell you this,

I talked to a psychologist, a pastor, and a councilor, multiples of each...

Guess what each and everyone told me?

You are young, you will be a mother again.

You will have more kids in the future.

You have to live for your future children.

Perhaps some medication will help you.

We need to get you on the right track for your future family.

My friends, mom's cousin died and it was really hard for all of us.

My grand father died and you just have to go on.

My daughter is infertile and I just tell her God does everything for a reason and to not complain.

He suffered too much anyway, it was his time, he would have suffered all too much

(All within the first two months of my son's death, mind you!!!!)

Needless to say,  I will never step foot in another "professional unit" for my grief, ever again.

There is truly nothing that will take my pain away. No medication, no counseling, no nothing!

What does help the pain, is when my son is remembered and honored for the fight he fought.

When my son's name is spoken proudly.

and when I can talk about my son, remember him, and just be supported in what ever way I am feeling!

I am going to feel sad, I am going to be pissed off, I am going to get suicidal, I am going to get ANGRY, I am going to feel sorrow, I am going to feel grief, though I am also going to feel happiness and peace.

Grief has no particular order, and I know that I will forever feel these things for the rest of my life.

All I want and need is support. and for my son to be remembered and loved.

So please, keep us all in your prayers this week, and if you can, attend Riverside Cemetery at 6pm on Wednesday, September 14th, to honor the precious 10 months my son thrived in my womb, and the precious 4 months we held him in our arms!

I would also love for those who can not be there, to change their profile picture on any social networking site, to a picture of my little man. You can also take pictures of your own balloon release or candle lighting. Thank you all so much for your support!!!!