.....And We Survived

Facebook has this "memories" app and each day it takes you back to whatever date it is, each year you have been on Facebook. You can see your old posts and pictures and sometimes it's kind of fun. Lately though, my pictures and posts have been about David's surgeries, hospital stays and ER visits. Apparently this time of year is usually a busy one for us.

Looking back though, there are so many memories of my sweet boy and so many times when I can't believe we all survived that particular time. Honestly, as a mom, I can't believe that I have made it through all the crisis in David's life and am still here to tell about it, but that is what Special Needs Mom's do.....we survive.

Special Needs kids with chronic conditions are often plagued with poor immune systems and are medically more fragile than the average child. Lungs, heart and kidney's often cause secondary issues to their primary conditions. Add into that the medications that many have to take for muscles, anxiety, seizures and a plethora of other conditions and their little bodies are just an ER visit waiting to happen. Then of course there is the sending them to school with all the other kids whose moms didn't think keeping their kid home with a fever, strep throat or that mysterious rash are necessary and we just get set up for more "I can't believe we survived this" moments.

David's moments started before he even left the womb as my hematacrit dropped due to a placenta-previa and I was only 27 weeks pregnant. Being seemingly fine one minute and the next having everyone rushing to get you to surgery and the neonatologist coming to tell you that they will "do everything they can to keep your child alive once born," is quite the end to a pregnancy and quite the start to a brand new life...but we survived. 

There is nothing that makes a parent more desperate than knowing their child is sick, maybe even dying and there is nothing that they can do to protect or save them. I had many of these desperate moments the first three months of Davids life in the NICU. It was a roller coaster ride of inconsistency and emotional turmoil as the day might start just fine, but within minutes turn critical. Many was the time I sat by my sons bed, holding my rosary and begging God not to take him from me. I would watch the breath mechanically go into him and see his tiny body fighting for life and I was powerless to do anything but pray.....but we survived.

How many frantic dashes have I made to the ER under my own steam or by ambulance because of seizures, sickness and other life threatening issues made more relevant and scary due to his condition? Too many to count and I would always find myself back at his bedside, usually alone and praying that hopefully once again it was God's plan for David to stay with me and live his life. The hours spent watching his O2 sats, his blood pressure and his heart rate and the gut wrenching fear that would overcome me each time the alarms would go off telling the doctors, nurses and me that no...he was still not okay were terrifying.....but we survived. 

Of course there were also the surgeries...many surgeries and they were mostly all BIG surgeries that would be hard on the healthiest person, let alone on my little guy. Each surgery was performed by the best in their field, but long hours under anesthesia and risks of infections and post surgery complications were always against David. One time, we almost lost him as he became septic post surgery and he was literally moments away from death. We were at a hospital in another state, away from home and I was by myself, once again praying that this would not be my last moments with my son. And even the surgeries that didn't have such dire post surgery outcomes had their difficulties, such as the spika cast that was basically a cast on both legs from hips to ankles with a bar in between that kept his legs in a V formation. We had to drive 8 hours in our van with his legs like this to get home. Poor guy was a trooper though.....and we survived.

Yes, David is a survivor. He has survived prematurity, a grade 4 brain bleed, strokes, hundreds of seizures, Candida (and all the nasty side effects), two major hip surgeries, leg surgeries, a major spine surgery, the flu, pneumonia, being septic several times, strep throat, hypothermia brought on by medication, 2 post surgery broken legs, surgeries to remove hardware and shunt surgery five times (three of those times were within three days).....and I survived too!

Life as a Special Needs mom is all about survival...the child's and the parents. It's about faith, prayer and the ability not to sweat the small stuff and actually knowing when it is the small stuff. Looking back, these last 18 years have been quite the adventure and mixed in very heavily with all of  the drama has also been laughter, watching my son whom they said would never make it out of the NICU not only survive but also thrive. I have watched him grow and mature into a beautiful young man with a mind of his own, a stubborn streak a mile wide and a wicked sense of humor. There have been trips, mile stones and tremendous joy and those I guess are the way I as a mom have survived, because only when Facebook reminds me of the hospital stays, surgeries and critical moments do I think of it as survival. Day to day as I watch my boy grow and live his life happily and to the fullest, that is just what I call living.

Yes, I am a survivor but more importantly I am a mom to a very special boy and  quite honestly, I wouldn't change a moment of these last 18 years. God chose me.....and we continue to survive.