Wow, I originally started to blog in November 2010, as you can tell I did not get very far with that! That does not mean our lives have been boring since. So much has happened. My babies have gone from Thirteen years old to Seventeen years old. Still have not had normal lives. Still TJ is usually a happy camper. His health is not as healthy as it use to be. He has gone from TPN I/V feeds back to his G/J tube feeds an he now needs Normal Saline I/V fluids at night to help with Dysautonomia issues such as many bladder infections other issues in that department. He has had a Fractured Femur from just doing therapy. Many Central Line Infections, Spinal Surgery, Scoliosis worsening to where he is having a harder time breathing to where the doc wants to switch from oxygen to a CPAP. He is not my baby any more, he is a young Man. My adorable young Man. Who still loves to flirt with the blonde's. Yep, you can see that head turn when we are strolling down the clinic hall or hospital halls, what an adolescent. But the main thing, my adolescent is happy and life is the way it was going to be since day one. No mother wants that for their child and will never be completely happy but in time you learn to adopt to the situation. I guess, I learned that from my Mom. A Mother should never bury their child and you think they would never be able to bare that much pain. Watching my parents, they never do, they just learn to cope in different ways.
Madison, who was suppose to be my healthy child and was suppose to stand by and watch TJ get all the attention for being being the so called "special needs" and take it for so many years, she did. The rude comments that were said to her, that TJ needed the attention she was fine, the pain she endured for so many years. My sweet shy girl who would do anything for her TJ, who knew her world would end like this. This was my Sports Girl, Pre AP Student, Perfectionist, almost OCD girl. The one the doctors thought was trying to steal attention from TJ. As a Mother, you know, and I knew she was not faking. The things she would say and the way she would articulate her pain, there was no way my precious girl was faking. Then some answers were coming and they did come but still not enough. My sweet girl continued to deteriorate in front of our eyes. Days turned into Weeks, Weeks into Months, Months into Years. A childhood gone and you cannot get it back. In my eyes her situation is so so much worse. Her life was not suppose to be this way, she had it all and slowly loosing it all, the pain and the no answers. The friendships lost. I have learned to hate Mito..... Some families can have lives and do things, the longer my kids have this Damn Disease we are stuck in this house. This house that gets littler and littler and the walls are closing in. Not to mention my aches and pains that come and go. Are they older aches pains are they Mito aches and pains?
So that is pretty much from 2010 to 2014. Except there is more Diagnosing going on that I will share when the confirmation comes in. I guess that is my sudden need to change my mind on blogging. World can seem like it stinks even more. But when you feel this sad and alone you have to find the good. So here is today's good. TJ's Hicentra was approved after a doctor wrote another letter and I had to put out my "Momma Bear" writing. The Big Big Great News. TJ's new Tobbi was approved. So a new Eye Gaze Computer should be coming soon. Then he will be getting his Internet on his computer. He will be able to call peoples cell phones. Don't make me mad or I will give him your cell phone number, he has been practicing! As always my Great Family Support, could not do it without them. Next week, when I know things for sure. I will be blogging a status blog. Hoping for a Healing Blog. We are going to get some of My Sweet Adorable Girl's Life Back!
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