It was real

I look at a picture of my son. I lift my shirt and trace my finger tips over the stretch marked skin on my stomach. I stare off into space and I can hardly believe any of this was even real. I re-read facebook posts from 2010 and every part of me shatters all over again.

This was real. I have gone two seasons with out blogging. It is bottled up. Blogging saved my life.

I am confused as to what healing is and what I need to do.

I stay so busy, unintentionally. I can hardly determine whether I am doing well and healing or just too busy to grieve and even think about anything.

There is certainly never more than a few hours where my son is not spoken of. I think about him all the time. A few hours will pass and he will not cross my mind and when he does, my world stops and I just take a few seconds and admire him in my thoughts. I will come across a photo of him and my heart stops and I feel a real physical pain in my chest and a sting in my finger tips.

I have indulged in business and love and service and finding myself.

My life for the past 2 years has been everything but easy but it has always been so full of love. I always find a way to manage and make things work. I am finding the perfect balance of not taking life so seriously, but cherishing it and holding it close at the same time.

Everyone says they are amazed at how well Ive dealt with my son passing away and how much good I have done. As if they could never do what I have done and even go as far as saying "I could never live without my baby. I love him too much. You must be much stronger than I am." While those are very nice things to say, I dont exactly take offense to them but I do want people to know how horrible and hard this was for me and that there is just some kind of hope given to us that saves our lives. It was never easy for me and I nearly killed myself. I say these things and tell my story over and over again because somewhere out there, a newly bereaved mother is going to read my blog and may think she is not doing good because she doens't have the energy to honor her child right now or to do anything positive in her child's name or even go on with life right now.

I swear to you I have been there. Just go back and read my first posts after Max passed away. I want everyone to know that it gets better. and that it is okay to be miserable and do what ever it is that you need to do right now. I didnt just lose my son one day and the next day decide Im going to do a bunch of great things in his name. It didnt happen that way and I went through the most trecherous, horrbile, and even physical pain. That stuff takes time and there is absolutely no time frame or schedule or anything!

It is amazing how so many of my prayers have been answered and how such little things arent so painful anymore. I remember ANY time I was asked about my tattoos or if I had kids or anything related to Max, my heart would drop and it was like at that moment, the entire universe just shouted in my face, "Oh yea, your baby died!"

Now I seriously love talking about Max and I have no problem doing so. I chat with other moms all the time and share my experiences and I know I have been helpful to many of my friends and clients.

My baby lived. He was the sweetest, most addicting, and happy little boy. In his presense you could truly feel his soul. The sweetest little soul. He has changed so many lives. Though I can talk about him and share his life and look at his things much easier now, there will always be those moments where everything is relived and 10x more painful and hits you all over again. Though these moments are more comforting now because I can get so caught up in this busy lifestyle, I need to remember I am human still.

I have had this blog for almost 2 years now. I never thought I'd be here. I encourage you to go back to my previous posts, from when I first started this blog, and follow our journey from the beginning and look at how for we've come and how many great things my little boy has done.


One thing I have learned about myself is that I am a damn good mother and I always will be. To Max and to my future babies. I re-read older posts and I think, how the hell did I get through that? Not knowing if my baby was going to make it. I was so in love with him and attatched to him. How did I handle being a heart mom. Tons of medications every day, never knowing what was going to happen next. We stayed busy with doctor appointments all over and many hospital visits but we still connected with our son and had the strongest bond and made sure he had everything.

The first year, I couldnt even fathom the thought of having another child. The idea alone made me sick to my stomach. I couldn't even handle being around other babies and children. I ruined every holiday event for our families. I cried at every event. I stepped foot in the door at Max's grandparents house on Easter day and immediately started sobbing. I made it through all of this. I can enjoy family events now and I love the thought of having another child some day. I just cant believe how far Ive come thanks to my precious baby boy and the Lord and every thing else out there that has given me guidance and strength.

My personal life lately has been the most challenging so far since everything. I fell in love for the first time since my son's father. I finally found someone to give all of this love I had built up to. I felt like I was happier and starting to heal and I found myself not so attatched to Max's bear and his blankeys and his clothes and I became attatched to this love. I ended up getting hurt really bad in this love and that is what I am dealing with right now. but it has also only shown me what I have to offer because of my son! I have such a huge, honest, and devoted amount of love to give. I can love so much and give someone everything. My son gave me the ability to love unconditionally and without fear and doubt and endlessly. I will find someone who is deserving of such a strong and pure love one day. I am in no rush. I am just so thankful that I am who I am because of my precious little man, Max.

I also am just so thankful I have been given the ability to realize things could be so much worse. I appreciate everything and I dwell over nothing. My time is precious and I hardly allow myself to stress over such little things. I am just so thankful for my baby and how differently I am able to SEE, thanks to him!

Also, an update on Max's headstone! It is in! I wasn't notified that it was done, I didnt get any updates and the back design wasn't even finished. I am still getting those details worked out with the designer but reguardless it is beautiful and I am so happy and thankful that it is there and that my son's name stands some where on something so beautiful that shows who he was and what reminds us of him.

Also, if you remember my post on Pregnancy and Infantloss awareness month in October of 2011, I got to meet little Jaron's new baby sister! Meet the beautiful rainbow baby, Madden! She is soo sweet! I think she looks a lot like Max! and she was born on NOVEMBER 14th!!! NO Im not joking! If you know us you know that the number 14 is tattooed on my body 3 times and that I see that number everywhere and that it is an amazing and super significant  number and sign to me that I see every day! I got a call at 2:30am from Krystal, telling me her water broke and she was heading to the hospital! I couldnt believe it! November 14th! We joked about how crazy it would be if she too was born on the 14th, as her big sister's birthday is April 14th and Jarons funeral was on October 14th!

This little girl is SO special! She was in the NICU at RMH for 2 weeks! The same NICU where Max was for 1 month! We got to go see her twice and we were even able to stay in the guest center, the same place where we lived for a month! It was so emotional but I handled it so well and I loved spending time with this little girl. Going back to the NICU was bitter sweet! It brought back so many beautiful memories! This little girl means so much to me!

Thank you everyone for keeping our family in your thoughts and prayers always and thank you for helping me share about my son and helping me survive this journey! I am so thankful for the support I have been given! I couldnt do it without everyone!

Keep updated for more CHD awareness T shirts for Max's 2nd Angelversary!!!! <3

Stronger

Oh the changes I have had to make, the things I have had to adapt to.

I didn't ask for this.

I never knew I could handle any of this and I barely did.

Before my own child died, I knew of a few people that had lost their children. When I looked at them, all I could help but think to myself is,
"How are they smiling?"
"Their child is dead, how are they even living right now?"
"I just couldn't do it. I couldn't handle that!"
"If my child died, I would just simply die too."

These are the things that people now say to me and must think amongst themselves too.

"Omg that is SO sad."
"Oh I just couldn't do it!"
"You are SO strong! I could NEVER do that!"

As if I chose this.

The truth is, life does go on. Maybe not the life we imagined, our worst nightmare even, but some how we become stronger every day.

Before, even the thought of any of my family members dying, was quickly swept away by, "oh I'd just die too."

End of story.


When I first learned that my son was going to die, I had a plan.  I would easily dive head first off the hospital balcony and hope I'd die too.

The day came, and I was surrounded by so much love and so many family members. My body went into a shock from that moment on and for the next few months even. This is what saved my own life. My body knew exactly what to do, and released some type of chemicals in my brain, so I did not feel the full on effect of the HORRIBLE, UNNATURAL, THEFT of my brand new BABY! Who I just held for 4 amazing months in my arms, and who I carried and protected for 41.6 weeks of pregnancy! The bond my son and I had created before he even took his first breath of air, something I can't explain.

I miss him so much. Nothing has ever felt so right for me. Nothing has ever felt as natural and as perfect as being Max's mom.  It has been 1 year, 4 months, 2 weeks and 4 days since I held my precious baby boy. I NEVER thought I'd be here right now. I thought surely I'd be gone by now too. Some how, I kept pushing forward, and I've become stronger without even realizing it half of the time.

The first year after losing my whole world, I would have these painful attacks nearly every night. I would lye in bed and I could feel it coming on. My thoughts, my brain, reminding me that my son is GONE and that  I am ALONE in my bed, forcing me to look over at his empty crib. I was so excited for that crib! I put so much time into his nursery theme and spent a fortune on his beautiful organic, safari bedding. I thought that was the hardest decision I'd had to make yet!

These attacks caused my stomach to turn, I would curl over on my side in physical pain. I would sob as silently as I could, but sometimes my body just had to let out these painful, howling screams. My worst nightmare, a reality. Still so new to this. Still trying to find a new normal in a world where everything I have been preparing for and hoping for the last year is gone! Where this beautiful little person who I fell in love with, was just TAKEN from me!

Some nights, I felt the beginning signs of a huge crying spell coming on, and I would have to ignore it. I would have to change my thoughts and try to focus on something else or just go to sleep. My PTSD also made my envision horrible, random things. Absolutely nothing related to my son's death, just everything painful that I may have ever heard or seen in my life, I would have flashes of at night. to the point where I drove myself insane! I constantly day dreamed of my own death and when I would see my baby again. If God would forgive me for killing myself. I wrote dozens of suicide notes and in my journal I left a guide on what I wanted done with mine and my son's things, and where I wanted to go.

The sounds of my horrific, late night howling, still haunts me. I remember that pain, so raw and real.

It has been over a year, and these painful, sleepless nights have lessened. My PTSD has decreased significantly.

I am getting stronger.

but I am still SO HURT, BROKEN, and trying to learn how to live my life.

Over the last year I have found many little things to occupy my time. I have also some how, learned how to look at the positive side of almost everything!

I have felt real, raw, helpless, agonizing, and physical pain from this. I know now, that little things, are as they are, little things! I know now, that it could be so much worse.

Some how, I have learned to think of my son and smile. vs. hating the world because he can't be here.


Some how, I have learned to look at an innocent child's face, and see my son's precious soul. vs. being jealous of them, and asking why they get to be here and not my son.

Some how, I have learned how to tolerate selfish people, oblivious people and completely rude and obnoxious people and reactions. I have realized not everyone has suffered such a huge loss and it's irrational of me to set expectations for anyone.

Some how, I have learned to love and see the world, as if my son is apart of everything beautiful and good!

and some how, I still have days where I completely forget about all of this and absolutely hate the world and want NOTHING but my precious baby boy back. but these days are coming of less and less, but I am absolutely STILL authorized to them, whenever the hell they decide to come on!

All in all, I feel like I am able to love so strong and so passionately now, because of the fight my son fought here. In everything that I do!

I have all this love for him. When you held him, you knew he was special. You couldn't help but love and appreciate everything else too.

I just want to give some hope, to anyone that may be suffering the most devastating loss, it does get better.
Not because it hurts any less, but because we become stronger!  Push through, find something good to do for yourself and others, and you can fight through your pain! You can find some happiness again! We can remember our children and SMILE! We are still entitled to and WILL have our "bad" days!
We will never be "fixed" "cured" " just fine" or "back to normal again"! Not ever! but the days where we feel like there is no possibly way we can survive this, will lessen!

Another thing I would just like to share, is that I have been on this road 100% clean and sober.
I am a recovering addict and alcoholic and was diagnosed with clinical depression at 12 years old.
I almost had a drink the first month after we lost Max. I was still numb and felt like I wanted to drink, and was totally fine with it. I didn't end up drinking at all, thank God, and quickly realized that I was not in the right mind and that I would NEVER be okay with using any kind of substance again. It has been a struggle and still is, working through this completely feeling 100% of everything. I have also been on an anti-depressant in the past, which I stopped taking a few months before I got pregnant. (not related to max's congenital anomalies) I went to psych therapy and spoke with pastors and counselors who suggested a medication to ease my pain, but I decided against such and knew that I needed to feel these things to move forward. There is nothing wrong with taking medication if you need it, but it was an accomplishment for myself, to get through this without the assistance of anything but what I created for myself, which was healthy activities that give me focus! 



To my baby,           You are everything that I could have ever wanted. Momma is SO incredibly proud of you! When I think of you, I think of strength, sweetness, beauty, cuteness, silliness, happiness, pure joy and hope! You gave me a lifetime of happiness and love, in the time of a full term pregnancy and just 4 months in my arms. I could have not imagined a more beautiful baby, with such an amazing little personality. If mommy could just hold you once more, I'd give anything. but momma will hold you again one day. Thank you for fighting to be with mommy for such a while on this Earth! You were always so happy and smiling! Thank you for being so strong for momma! You have taught me so much my precious little man! Mommy loves you so incredibly much!                                                      Forever and ever, my baby you'll be <3
                                                                                                                        Love, momma

 My girl. Still talks about Max so much every day! She wanted to take his photo and his teddy for show and tell last week! and she sure did! She even took his teddy to school one day without telling me! I searched all over the house for him! I panicked! So I decided to ask her if she knew where he was, and she calmly replied, "he's at school." LOL

 Some how, this little woman remembers every detail about Max. She is so amazing, the best little auntie ever! Max is such a huge part of her and I see him in her so much! A few weeks ago she asked me, "When is Max coming home to his mommy?" It tore my heart into a million pieces because she just doesn't understand still. then she said, "how come Max doesn't have to go to the doctor anymore?" she answered herself, and said, "He's all better now." She must understand something.

We love you bubbas!

P.S.  I can not express to you all how much your comments and emails have helped me through the past year. Please know that your words encourage me so much and I love receiving them! Please do not be afraid to comment here or email me with anything! xoxoxoxoxo

CHD Awareness Month: My CHD Angel and CHD AWARENESS T-SHIRTS

The month of February is Congenital Heart Defect Awareness month.

Congenital Heart Defects: A malformation of the heart or the large blood vessels near the heart. The term "congenital" speaks only to time, not to causation; it means "born with" or "present at birth."


As many of you know, Max suffered from multiple CHDs.  The disease that he most likely had, is called Alagille Syndrome or AGS. One of the symptoms of AGS can be heart defects. Children with AGS as well as heart defects, have a 30% chance of living to be 6 years old. Maddox's heart was very sick. All 4 of his heart valves were extremely small and narrow, especially his mitral valve. They called this stenosis, meaning narrow. This caused his heart to have to work much harder than it should have, to pump the blood through out his body. His valves were so small, that it was causing the blood to go the opposite direction because it just could not get through such a small opening. This caused Max's heart to work so hard, which lead to the muscle thickening. After 4 months of pumping so hard, trying to get blood through those tiny valves, his heart was tired out. The muscles were thick, stretched out, and had lost their elasticity. He fought so hard, and brought so much joy in that time he was here. Even when he was sick.

I AM ASKING YOU, the person reading this, to please share Max's story at least once today. With anyone. Just tell someone that he lived, and that he could no longer live because of his heart defect that he was born with. Tell someone about CHDs. It is time to spread awareness! Find something red today, anything red. A shirt, hair tie, bracelet, necklace, a bow, anything. This will resemble and honor children born with a CHD that could still be fighting or have grown their wings. THANK YOU!!!!!!!! <3

Last year, we had hundreds of people share their photos of themselves and their families wearing red to honor Max's heart and CHD awareness! This year we are ordering shirts to help fund CHD research through the Children's Heart Foundation!

Help us honor Max and all CHD Angels and warriors still fighting their battle! Please contact me to purchase your t-shirt and thank you all so much for helping us spread awareness!!!!

You can contact me through the following emails and numbers.
brookie_slus_75@hotmail.com
mdrphotography91410@hotmail.com
779-861-1569

You can purchase your shirt via paypal or if you are in the area you can get in contact with me. Both emails above are registered with paypal, so you can leave how many shirts and what sizes you'd like in the paypal note. Thank you all so much!!!!

This is me and Max's dad. Happy, pregnant, blissfully ignorant. I spent my pregnancy doing everything I could to prepare for this new life. I spent hours each day, for months, just trying to learn everything that I needed to know, making so many decisions and thinking about my many years I thought I would have ahead of me with my son. To parent him, teach him, love him, and care for him. Constantly reading up on what was safe for me to eat, breastfeeding tips, what products are safe, when to start solids, when to start weaning and potty training, and home school and all of these things that I didn't know I would never even get the chance. He wouldn't get the chance. I didn't think to prepare for devastation, heart break, watching your child suffer, giving your child 10 medications a day, infant CPR, hospitals, doctors, decisions, and death.

I want to go back to this. My baby was safe, healthy and happy inside of me. I had such a perfect pregnancy. I get so angry with myself for rushing it. My entire pregnancy all I wanted was for him to be here. I cried because I never thought he would come. If I would have known he was going to come and go so fast, I would have soaked up every single minute with him inside me, instead of begging for him to come.  However, I am so thankful for having had such a healthy pregnancy. Was an amazing 41.6 weeks with my precious boy!

This is us. Me and Max. At this moment, I had no idea anything was wrong with him. I had no idea that when he went to the nursery, they would hear a heart murmur, and want to take him to Rockford. My poor guy had a rough time coming out because I just couldnt get him out from under my pelvic bone. I felt bad enough about that, but I was so thankful that he was finally here. A few hours after I delivered, they came and told us that on the ultrasound when I was still pregnant, they saw that he may have had a hypoplastic(small) kidney, which is a symptom of AGS (which we found out later). We were devastated that they even thought something was wrong, and when they told us they wanted to get him to Rockford asap, my heart shattered. They released me just a few hours after giving birth and we drove up to Rockford to be with our baby. I was 15 years old, I prepared and knew everything there was to know about pregnancy, birth, and a new baby. My whole world changed when I learned my baby had a broken heart!

This is Max in the NICU. We stayed there for 1 month and learned everything we needed to know about having a heart baby! We fell in love with our precious little boy, learned his personality, and all the special techniques we had to perform to keep him alive and as healthy as he could be. We learned how to use his monitor, how to insert his ng tube from his nose to his stomach, how to draw up and give him all of his meds, and what to do in case he has an arrest. All these things scared the hell out of me, but I never thought I would really lose him. Our mother baby bond was so perfect and strong. Especially when we finally established breastfeeding. I loved him so much. Breastfeeding him allowed me to feel like I was finally able to do something for him. With how sick he was, I was finally able to give him something he liked and something that was good for him. That is one thing that I miss the most about him. He was such a messy eater, but he was always so content afterwards. He was so perfect!!!!

We were home for a little over a month with our precious boy! The best days of our lives. He was so strong! We had a perfect routine of meds, eating, school, family, doctors appointments, and sleep. It was a perfect routine that we were 100% consistent with and it worked so well for us. We enjoyed life so much while we had our precious little man! Most people complain about the little normal things that normal healthy babies do. It makes me wonder what they would have done if they would have had a sick child, that required 10 times more care. I never even thought twice about it. It was 2nd nature to us then, and we just loved and cared for our baby!

This is Max, the night we made the final ER visit, and left for Rockford Memorial Hospital, not knowing that we would never return home with our baby alive. You can tell when a heart condition is worsening, when you start to notice rapid breathing movements, labored breathing, a grunt or noise with breathing, fluid in the lungs, purple lips, failure to thrive, and low o2 sats.

We only had 2 hospital visits in those 5 weeks home, before we paid our final ER visit and never returned home. As a heart parent, when they tell you you are getting transferred, it is the worst feeling because it means something is really not okay. Seemingly little things, were huge accomplishments for Max. Things like gaining weight, growing, breathing right, holding his head up, using his muscles, were all very difficult for him, but we did so much home therapy and worked with him so much. When he did take a step forward in his development, it was a big deal!!! We were so proud of him! He worked so hard to get to where he got, so when they told us he was sick again, it was devastating!

These photos are of the last 2 weeks we had with Max, while he was breathing on his own. He had just learned to smile and almost let out a giggle. He loved to play, he started to show an interest in toys, and he was so alert all the time. During this hospital stay, we made the best out it and tried to have fun and enjoy our baby and help him continue to grow and develop as much as he could in the hospital. But for some reason, he just could not get off of the oxygen. There were 3 times where they told us we were going home, then Max's o2 sats would drop again. This was devastating every time. We had to watch our baby get poked every day, our routine got messed up by a nurse who didnt follow our schedule, and it was really hard for us and to see Max like that when we thought everything was going okay. Finally, they decided that it was Max's heart that was filling his organs up with fluid, and causing him difficulty breathing. So they sent us to Hope Children's hospital in Oak Lawn, IL. Once again, we are devastated, and just want answers and RELIEF for our precious baby! 

These photos are after we got transferred. Max was so tired and weak. I hated seeing him like that. My mom left that night and it was just me and Max alone in the hospital. Ron had a class back home that he had to attend and so he was coming the next day. Finally, Max's little heart gave out, and he went into cardiac arrest for the first time, which was the worst and scariest moment of my life. These were Maddox's last weeks.

During the time Max was intubated, my heart ached so bad. When he would cough, my chest would tighten up and I just wanted to take all the pain away for him. When he had to get poked, I would scream and cry and had to leave the room. I felt all of his pain too and I hate it so much that he had to experience this all! My baby suffered! As bad as I want him back, I know he is no longer suffering. That is the only thing I can take comfort in. Congenital Heart defects are so dangerous and bring so much pain! We need to spread awareness and continue to fund for research so we can learn more on how to save lives!

Our baby boy fought so hard! We went through weeks of hell. Being told that our son might not live to be 6 years old, to he might not be able to live for any more than a few months, to he could die any day now. Our baby was kept comfortable, but I could still tell he was fighting so hard to stay. It was his heart that failed him. He had other organ issues, but it was his heart that was the most defected. Max is 1 in 100,000 babies that did not live to see his first birthday. It is so hard for us every day, but I try to remember it was so hard for him, and he fought so hard to be with us, and he made us so happy and humbled us and made us better people! I know he would want us to continue to spread awareness to help other innocent lives like him! I am so proud of my precious little angel! He has truly changed so many lives and made a difference in this world!

Max, mommy loves you so much! I am so sorry that I couldn't fix your broken heart!!!! Mommy wishes you could be here and healthy, but that can not happen. Momma is so proud of you for fighting so hard! I am so thankful for you and for being able to hold you for as long as I did! We are so blessed to have had you in our arms for even just that short time. I feel you here with my still. I know I will see you again! Thank you for fighting so hard for momma and our family!!!!! We are all so proud of you!!!



I just wanted to share some of what Max went through and what our family went through with him. Heart defects are very serious and we need to continue to spread awareness for our future children's sake!

• Congenital Heart Defects are the #1 birth defect worldwide
• Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
• Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
• Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
• Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
• The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
• The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
• Though research is ongoing, at least 35 defects have now been identified
• Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
• It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications