Our story started like so many others do being ecstatic by the new addition to the family, yet we had no idea what was in store for us. The first few days everything was perfect till the day we needed to be discharged, the doctor was listening so intensely to my little Karla`s heart and was saying nothing. My mother heart was aching as I just knew there was a problem and by the look on the doctor’s face, a big one.
They asked to speak to us privately, and our world was just shattered by what they were suspecting, not only was there a diagnosis that they needed to confirm with blood tests, but they also needed us to get to a cardiologist ASAP. This was defiantly not what we were expecting or planned but so the journey started.
We made an appointment with the cardiologist and the news was not good, this little girl is going to have to fight to live. Born with AVSD and me having to feed her every 2 hours around the clock to just get her enough nourishment so she can survive was going to be a hard road. But we knew that God had a plan and put everything happening in his hands. Her first heart surgery was 6 weeks and the second open heart surgery was at 17 months. If you see her running around today between her schoolmates, you would never know. It’s just her battle scares, as we call them, that would give it away. We were blessed in the sense that she had no major other problems, and with a heart surgeon that performed a miracle, she can lead the life she wants.
In the beginning, I went into what we call survival mode you do everything that’s needed but don’t really realize or take in what happening around you, you take care of everything and everyone around you but forget to grieve for what you have lost. It’s only later that you say goodbye to those dreams you had and then you build and start dreaming of new more exciting ones that would lie ahead.
Not every day is easy but as with any other child you would be going through this as well, we slowly but surely learned the new pace of doing things and the patience of mastering milestones not only the big ones but every single small one in-between as well which with our eldest just came so naturally.
We started with Early intervention when she was only 6 weeks old and even though there are days you are not sure if you are making the right choices for your children this I know was one of the best we made. She started with physio only a bit later on and then with speech and occupational therapy a year after that. Not every parent walks the same path with their child with therapists because not every child is the same but I believe every child should at least receive early intervention, it set them up for life.
She changed our lives with smiles, laughter and unconditional love, she made us (Aldo and me) better parents and Danika a fantastic big sister. Even though we think we are teaching her she teaches us so much more.
Some days were easier than others and some days we fight harder for our child’s rights. Our journey is still only in the beginning, and we still have lots of adventures and deep waters to go through together, but I cannot imagine it being any different than what it is now.
A very proud mother to two beautiful inspirational daughters.
Lizann