Are you parenting a child with special needs? We often get emails from families struggling emotionally and financially because of chronically sick children. Often these messages are emotional. Nothing can be worst for parents than caring for a very sick child.
My post today is about such a family. As a Canadian, I am usually stunned at the financial hardship that my neighbours to the south endure. This story is no exception.
Hope For Evangelina a Child with Special Needs was written by Mom Amanda, using a MOBILE PHONE. Complete with vivid images, her message brought up the memory of my own 30 wk premie. Their financial and family issues are unlike ours, but the helplessness of having to watch your child struggle, is shared. Many of you will also empathize, Evangelina pulls at the HeartStrings…
With no further ado, I pass you to mom of 2, Amanda.
Hello, my name is Amanda Parks.
I live in Oconomowoc, Wisconsin with my husband. We have two daughters a three year and a 10 month old, Evangelina.
When I was 20 weeks pregnant with Evangelina we found out she had something wrong with her heart. I was sent to a high risk clinic in The Children’s Hospital of Milwaukee Wisconsin.
My 1st appointment was about 5 hours long and we found out the type of Congenital Heart Defect (CHD) our daughter would be born with. Its very rare, 1 in 1 million . It’s known as interrupted aortic arch Type A with multiple VSDs (Ventricular Septal Defects).
When Evangelina was born she was immediately put on live-saving machines. I didn’t get to see her until the next day, I had complications of my own and almost died. But I’m here and she is the reason why! I had to be by her side!
She wasn’t allowed to eat and was to have surgery immediately. However,
she had an infection in her main line and surgery was postponed until everything cleared up.
After fighting the infection off, Evangelina had her first open heart surgery on July 31st 2012. Surgery made her left vocal cord paralysed and wasn’t able to feed normally.
Evangelina was discharged from children’s hospital on September 17th . She has been home since.
She was cleared to eat regular baby food and sit up and eat when she was 7 1/2 months old because her vocal cord corrected itself!!!
We’ve had a few other small hurdles. However, 3 months ago we found out she has muscle tissue growing in her left ventricle causing blockage. She was at 50% then. Her doctors explained that due to it being muscle tissue, even when removed it will constantly grow back.
Evangelina will need heart surgeries for the rest of her life. We have her next echo on June 26th to see what percentage the blockage is at now.
Evangelina has a lot of development issues. She needs physical and occupational therapy every day. She is just now starting to try to crawl but isn’t rolling over yet and hates laying on her tummy.
Evangelina was a planned pregnancy but we were nowhere near ready for something like this…. My husband works very hard to provide for us. He is rarely home, works hard and has very little to show.
We have lost our two vehicles, we are currently losing our home and have had to file for bankruptcy.
Unfortunately, during situations and times like these, you find out who your real family and friends are. We have come to find out we don’t have much of either left.
We haven’t been able to find another place to live yet… we will be homeless as of may 26th 2013 .
We have called many resources, none really being able to help us out.
We can’t stay in shelters due to Evangelina’s therapy. We have no family that will take us in. My parents moved in to help us and now have the same problem finding a place.
My husband and I feel as if we have messed my parents lives up. It is draining. We go to food pantries to supply food and baby needs. My husband and my mother are the only two able to work.
I can’t get daycares to watch Evangelina due to her special needs…. and my father has medical conditions of his own.
Our future plans are unknown except we need a house and a safe vehicle . Evangelina has many more hurdles to overcome and we will be here every step of the way. Granted, we struggle on a daily basis but the girls never go without anything! We cant afford many things though.
We were told that food share had been denied because we filled out the forms wrong… and other State help has been denied too.
Evangelina’s heart meds are always so expensive and sometimes our insurance will drop the girls out of nowhere….
There is just so much and I don’t want to seem like I am complaining or whining or begging for anything but we need help and we can’t ask family because, sadly, they won’t…
We just want to get back up and it seems everyone just keeps kicking us while we are down.