Guest post from Jackie Ross: Could you do it?

I often get asked how expensive Evan’s care is.  I don’t flinch when I say VERY expensive.  But, what are we supposed to do?  We do what any family would do….we get the best care for Evan and wait…check the mail for the bills and then tally it up..and do our best to pay our part.  I’m asked if I would move for Evan’s care if it came down to it….the answer is an absolute yes.  To uproot….is a hard decision…could you do it?

Here’s a story of a good Heart Mama friend of mine.  Jackie has become an online buddy – one I “laugh” with, exchange sarcastic comments in our weight loss support group, and pray fervently for as I watch her walk her journey with her very special boy, Xavier.

“I think about my life before CHD and it seems like a scene from a movie. I had it all together. I did it the “right” way. I went to college. Started my career as a teacher. Had a love at first sight moment with the man of my dreams. We had a fairytale wedding. We had a great first year of marriage where we were selfish and did fun things together, went on vacation, got to know each other as man and wife. Things were “perfect”. In the summer of 2010, we started talking about having a baby. I was so ready to be a mom. It was like a craving…it was time. We were over the moon excited when on a Sunday in September, I had a positive pregnancy test..ok make that 3 positive tests..but I wanted to be sure. There is was…right in front of me. A little white stick that held all my hopes and dreams for the future. Of course I was just like any first time pregnant woman…crazy protective over myself and my baby. I was VERY sick throughout the entire pregnancy…but I still enjoyed every moment. The first four months flew by and soon we were in the ultrasound room having the anatomy scan. To be honest I thought the moment we were out of the first trimester we were out of the woods…I had no idea that things could and would go “wrong”.

 

Xavier

We were told our baby boy was going to be born with a very severe heart condition called Hypoplastic Left Heart Syndrome…it was about as bad as it could be. I really can’t recall in detail the days that followed the diagnosis. My world no longer existed. My ten year plan no longer made sense. I had so many questions..would my baby boy live, would I be able to do this, how was I expected to go on, did we pick the best hospital, would we be able to have the three children I wanted, would I ever go back to work, how would be pay for all this, would we be able to get him insurance, how do we tell people……

 

Xavier and his Mama – Jackie

After going through all the stages of morning, I went into super planning mode. We picked The Children’s Hospital of Philadelphia, picked a care team, kept a watchful eye on our babies heart and did our best to educate ourselves. When we were ready, we shared our news with those closest to us. We were supported by those that mattered most, however some relationships didn’t weather the storm. I guess it’s true that crisis is a test on relationships…they can either get stronger or dwindle under the pressure. It really bothered me for a while, it seemed to me that people were turning their backs on my child. I was hurt and angry. In hindsight I know that even if my Xavier was born heart healthy, these people would have eventually shown their true colors…one thing that my son has taught me is that you only need a handful of good, strong, supportive friends. Plus my heart warrior has brought to me more new friends then I could have ever dreamed of! Thanks Xavier!!!!

 

Xavier was born on May 28 th, 2011. His first hospital stay was pretty uneventful…I always chuckle when I say that..the poor baby had open heart surgery, but in the realm of heart babies..he only had a few minor bumps in the road. We went home on June 21 st and that is when I realized how different my life was going to be. I had to turn people away from visiting, hound people about their sneezes and sniffles. We were lucky, we were interstage during the summer..less stress, but stress non the less. The only family who came to visit were his grandparents and my sister in law. I do think that some people were afraid to come over and I really can’t blame them..they didn’t want to be the one to get him sick. So we sat in isolation..counting down the days when we would have to go back to CHOP. Xavier only left the house when we would go to the doctor. We would cover him with a blanket in the sorry attempt to keep the germs at bay. On the occasion that we would have to take him out, we would get pity looks and glances at his size and NG tube taped to his face. I would just hold him close and whisper to him how they were so jealous of his super cuteness! It took all I had not to slap these woman in the face. Being Xavier’s mommy has also taught me patience and resistance.

 

It was finally time to head back for Xavier’s Glen. He did great and came home in 8 days. He is so amazing…Xavier has shown me up close and personally the awesome power of God. Once we were home, I thought we would be taking a break from the hard stuff..and medically we did. However, the real work was about to begin. It was time to start a new life..and I was unsure about what that life would be and where it would take us.

 

My husband had to go into super working mode, while I adjusted to my life as stay at home mom, maid, nurse and insurance expert. I found advice, comfort and experience in a group for heart moms online. I was navigating unchartered territory. Panic set in when I realized my cobra benefit were about to end. Thank God a part of the affordable care act had already been made law and Xavier could not be denied coverage based on his heart. I started researching private insurance plans. I was very happy with the company we were already with and started there. I was able to get coverage for Xavier and myself but it was crazy expensive…we had to pay double what we were for cobra and the co pays also doubled. Now I needed a referral for almost every doctor Xavier saw and specialist visits doubles. Almost every appointment was a specialist: cardiologist, neurologist, hematologist, PT, OT, Speech, ENT…all the money that we had spent years saving was flowing out of our account like water. I couldn’t work and my husband is self employed, running two companies. Panic set in fast. We are fortunate enough that we got help from family and had friends host fundraisers for us, but we just could not keep up. FinalIy i started looking into state run programs that would help get Xavier better, cheaper coverage. However, we made too much money and did not qualify for SS in NJ. We also didn’t qualify for NJ family care because children need to be without coverage for 6 months prior to being eligible…not possible for any child, let alone one who is so medically fragile. We were at a dead end. After talking with our social worker at CHOP…we realized what we had to do….we had to pack up our lives and move out of NJ.

 

Big move and a bigger decision, but ultimately it was what was best for our family. In PA kids with Xavier diagnosis quality for medical coverage regardless of how much money we make. We were able to get excellent care for our son without ending up homeless and without jumping through hoops…( well there is still some hoop jumping, but it’s mush less). We are now 30 minutes from CHOP, which takes away lots of stress and worry. We get all the early intervention services X needs and we have a CHOP pediatrician who can access all him records with a touch of a button.

 

Is my life where I expected it to be? NO. Do I sometimes miss that dream life I had always imagined? OF COURSE I DO. Do I wish I could change things? I WOULD MAKE XAVIER’S HEART WHOLE IN A SECOND IF GIVEN THE CHANCE. However, I am a better person, a stronger person, a better wife, mother, friend, daughter and Christian all because of my sons broken heart. I have real, solid friendships, a new appreciation for life and a better understanding of what it means to fight, all because if my sons broken heart. CHD changed my life plan, changed my life, changed my attitude…FOR THE BETTER.”

 

Please join Team Xtreme and follow Xavier’s journey by visiting our blog: www.xaviersheartjourney.blogspot.com