I'm Awake

My youngest son was born critically ill. Every day I would sit beside my baby's incubator and listen to doctors tell me all the reasons why my son was dying. Every day, I would watch him fight and overcome every reason that was trying to kill him. 

Every night around midnight, my son's nurse would tell me to go to my room at the Ronald McDonald house nearby. The night my son was six days old, I walked down the quiet sidewalk feeling completely exhausted and numb. A thought came to me, "There must be something to this world to make him fight so hard to stay in it." This thought startled me and made me stop walking. 

I brushed it from my mind and continued to walk to the house. 

I laid in bed wishing I could just go back to my son, when the thought washed over me again. Up until that moment, I didn't fully live. I had two other sons that gave me the only reason to function in this world. 

I feel asleep, only to awaken a few hours later to a person whispering in my ear, "If you want him to stay, you have to tell him to." This person terrified me and I jumped out of bed to find the intruder. Sudden pain from my c-section took over my thoughts and I struggled to get to my son. 

The doctor rounds were particularly brutal that morning. They told me my son was internally bleeding and his organs were slowly shutting down. 

They left the room and I looked down at my baby. I remembered the invisible intruder and wrestled in my mind if I had gone completely crazy. I quietly leaned over to my baby's ear and whispered, "Sammy, it's your mom. I'm sorry but I can't go home without you. I love you so much..please get better and stay with me." Every thing disappeared around me, there were no sounds, just an overwhelming sense of love. His nurse walked back in to his room and I quickly wiped the tears off of my cheeks. 

The next morning, I was greeted with the group of doctors that informed me that for some reason, my baby took a turn for the better. He was on the mend and they scheduled his first heart surgery. 

I didn't consciously acknowledge that those moments I experienced were my first spiritual moments..my first step in my awakening. To be honest, for years I just worked towards giving my son the life he wanted to honor his choice to stay. 

Eight years have past, along with struggles and pain that I've embraced as life lessons. I've lost so much and yet I've gained twice as much. I still have much to learn, but I'm in my place where I can help those in need of my guidance and love. 

This morning, I embrace my relationship with God, not what I was forced to believe as a child, but how He fills my soul with love and keeps me elated with His many miracles. 

Hatred and Social Security

I have been trying for three and a half years to receive Social Security for my son who has a rare chromosome deletion that has caused him to have many disabilities. 

This past April, I walked into the social security office determined not to leave until I had a check. 

I sat down with a woman and we went through my whole file. 

"Do you still live (address of my home)?"

"No, it was auctioned off a few months ago. My ex said he was paying the mortgage..he was not." 

"Do you still have an account at Charter Bank?" 

"No. My ex started dating someone in management at the bank and she, without my permission or knowledge, deactivated my bank card and closed out my account."

The look the woman gave me after stating facts such as these made me smile or chuckle. 

We went through my son's medical history..every diagnosis, surgery, hospital stays, medications, doctors. It all rolled off my tongue with ease although I apologized that I didn't remember exact dates occasionally, only the months and years. 

Finally, she covered her mouth as she read something on her computer screen. 

"Your ex has been submitting his wages onto your account making it seem that he still lives and supports you. This is a rough estimate, but you are owed around $19,000!"

As she spoke, I was washed with the memory of telling my ex years ago that the social security office needed him to submit a paper stating that he no longer lived at my residence. Apparently, he didn't, but instead took the time to submit his wages monthly for years so I would not have money to support his children. 

I started to cry. Thoughts of sadness washed over me. How could someone have that much hate to do things that hurt so many. 

"I am a walking contradiction..laughing at bad and crying at the good." I smiled as I thanked the woman and left. 

I drove home thinking of what $19,000 could do for my family. I could get my son glasses, communicator, music lessons, a dependable car to take him to doctor visits that were hours away from our home.. The list went on and on. 

Instead of receiving the money into the special bank account they instructed me to get, I received five percent of what is owed. I called the office many times. I couldn't drive to the office because I'm afraid my vehicle wouldn't make it.

I was finally told that Social Security will be sending me a payment of what is owed to me once every six months. 

Fear and anger washed over me for obvious reasons. Last night, as I sat outside as my boys slept, I cried and contemplated just giving up. 

The thought came to me that it would take around nine years to receive all that is owed and by that time, my son will be eighteen. If I didn't touch that money and just let it sit collecting interest, my son could have a hefty amount of money to use when starting out on his life. 

This morning, I'm embracing the idea that somehow I will find a way to pay my bills and provide what my son needs and I'll continue to do what I need to do to ensure that he has a life in which he will happily use the money to venture out on his own. 

I've come so far to give in now. And the devilish curiosity in me can't wait to see how I do it all. 

Rare Disease Awareness

This week is Rare Disease Awareness week. My youngest son, Pants has a microdeletion 16p11.2. Some of my fellow 16p Moms have posted on Facebook welcoming questions and comments regarding their children's condition. I thought to post the same, but I know I have bombarded my friends and family with the details of Pants condition. I have been wondering what I can do this week to bring awareness and the thought came to me this morning that maybe I should tell people why awareness is so important. 
I was told by a cardiologist while my Pants was still in my womb that he had severe heart defects. As if being informed that he would require many heart surgeries wasn't enough, she threw in the word "syndromes". You see, heart defects are a huge indication that a syndrome is involved. 
I cried as my doctor performed my amino and his nurse held my hand. I didn't want it done...I didn't care if he had a horrible syndrome. I didn't want to hear my "options" if the amino came back positive. He was my baby. He would be perfect to me. The amino came back with no known syndromes. And no one talked about syndromes after that..we'll until my Pants was born.
Pants was born five weeks early via emergency c-section because I was hemmoraging. They quickly took him away from me and bombarded me with the huge list of physical reasons why he would not make it. As I struggled to get out of my bed, Pants cardiologist came in and helped me into a wheelchair. 
"Grace, (by this time his card and I were on a first name basis) they said he's broken. They say he's going to die..." She quietly showed me his x-ray. My heart broke when I saw his deformed spine and as she went on to mention cleft palate, facial and other deformities. 
The next morning I went to the children's hospital to be with my baby. For a week, I was told they thought he had a syndrome called Triple C. If he had this syndrome, his quality of life would be nonexistent and since he was barely hanging on, I should consider letting him go. 
I hated his genetic doctor. In my mind, he was the reason Pants doctors were considering giving up on him. The genetic test results came back negative and the doctors became quiet about syndromes and focused on Pants getting better. 
Months went by and I knew I couldn't ignore that Pants had some kind of syndrome. I took him to get tested again, but the test did not find anything.  
A year and a half went by and I got the courage to take him to see another genetic doctor. At this point, I wanted answers. I wanted to know what to look for. Many times, Pants would come down with some kind of illness that the doctors couldn't understand why. 
The new genetic doctor sat me down with his test results.
"Your son has a microdeletion on his 16th chromosome. The reason this didn't show up on his previous tests is because this test has just recently been created. The problem with this is there's only around twenty five cases reported in the world. I can tell you what he has but I can't tell you what this means for your son."
I cried and I was pissed off. It all seemed like a cruel joke that would never end. 
One day, while I was researching his syndrome, I found a mother who had a daughter with the same syndrome. She created an online support group. The mothers started sharing their children's conditions and obstacles. Our group slowly grew, along with vital information about our kids. I found myself informing Pants doctors of his condition that I learned from my fellow Moms. I had Pants checked for conditions that could be a problem for him down the road. Information is power. 
I see new Moms joining the group regularly and it saddens me for the fact that they have to go through this but for the most part, I'm thankful that they have a place to go. 
So looking back, I see the need for awareness because no mother should ever be put in the situation where she is told she is alone, she doesn't have answers but frustration, and she should give up hope and just give up.
And a final note to my fellow.16p Moms, thank you for your strength and love and your determination to not only help yourselves up but to help those who come behind you.