Love Makes Us Stronger: Chasing Normal

Sometimes we as people tend to chase normal. We don't really think or live outside of the comfort zone of what is our normal life.

When our middle child was born we realized something was wrong at 6 months old. He would get out of breath when he cried and turn blue, he chocked often, and he fell completely off the growth chart by 7 months old and he still wasn't rolling over. The doctors sent us to a specialist to get blood and urine analysis. We were still in baby bliss and really just going with the flow, even though we realized something was wrong we lived in the world of not. Then one day when he was aprox 8 months old we got a call, the doctor was hysterical. They had found a protein in his urine that causes ammonia in the blood and he would be brain dead soon, she told us that there could be only 2 causes to this and both would kill my son before he was 2. We slept in his floor for about a month we were worried sick but they were wrong it turned out he didn't have either of those and we were relieved and took our healthy baby home. [They still can't figure out why his body is creating the protein and we still check for ammonia] A few months passed and when he should of started crawling he didn't. The doctors told us he was just a late bloomer and they were right by about 9 months our little boy started crawling. But by 18 months he still wasn't walking, he wasn't even standing. And then one day he got sick, and the next day he was almost lifeless in my arms, just a simple little virus landed us in the hospital for 10 days with the first 5 him fighting for his life. By the end of the hospital stay our sweet boy couldn't even sit up on his own, and his weak little legs had became so frail. It didn't make since how just 10 days could change my child so much he was so limp.

Before we left they told us that we needed to seek help for our son, that something was wrong and they had no idea what it could be. We started taking him to Shriners hospital for children, it was there they told me that if a child isn't walking by 5 he will never walk. I felt almost like I had time to make everything ok, we would reach normal. So we started therapy and revolved his life around making him stronger. It was there that he stood and moved independently for the first time with special equipment.

We saw improvement and he did get back to his baseline but that wasn't what we were looking for, and after a year and a half of intensive testing and a muscle biology, we were told we would not receive a diagnosis. Being his mom you know that didn't settle well, my boy was dwindling away and he wasn't receiving a diagnosis. He had been tested for so many things, spent more time in doctors offices than out but no one could figure out what was going on.

I demanded a second opinion and we were sent to Charleston to a neurologist specializing in muscles. He wouldn't tell us at the time but seemed to know what exactly was wrong with our son. With huge smiles we shook his hand and left, we were so happy that someone finally was getting to the root of the issue, and our boy might soon be able to get better. We felt so great we were in bliss. We left the doctors office and went to the beach where i imagined my son running in the sand

When we got home we received a call. They told us they think he has SMA and told us NOT to google it, it would do no good for us. We didn't have internet anyway and assumed we wouldn't find much about it if it wasn't going to do us good to google. Then it happened.... the day we received the diagnosis. He has a disease called SMA. Then the next words to come were ''i am so sorry to tell you this but it is terminal'' ''love him and be thankful for each day'' finding out that my son would never walk was hard news, but to find out that over time he would degenerate and eventually would no longer be able to eat or breath on his on. Simple tasks will be impossible. This left us devastated. King now has many machines he uses daily to improve his quality of life including needing a ventilator when he sleeps. Spinal muscular atrophy kills more young children than any other genetic disease.

The next year is a blurr, we just wanted to take it all away. We were scared, and mostly we didn't want our boy to die. They told us to love him and be thankful for each day.

We started to change our outlook on life and what was once important wasn't and a whole new world was presented to us. We were a mess at first, all we wanted was our boy to be normal but he wasn't. How could this happen to him, being a kid is the funniest time of ones life, and my son can't play on a playground, he cant play tag, climb trees, or do any of the fun things kids love to do. I had just had my third child at the time of diagnosis. But our sweet girl was born healthy, she met her milestones, and even started taking stops. She gave us our smile back.

Her birth brought new meaning to life. We decided to stop chasing normal and just embrace life, and that is what we did. We bought a home in the mountains where we intend to homestead, we were charged with hope. We no longer live as if our son is terminal, we are all terminal. We just live day to day embracing every simile we can catch, and he is doing great.

Lucky for us we had an amazing outlook on life when our daughter started to struggle, although she took steps she never ran, climbed, jumped or took off. She to was diagnosed and it came on her second birthday. Now 1 year later she is in a wheelchair and is loosing the ability to walk. It may not be what we planned for our children but we are going to make the best out of what we have.

We have a 3rd child, an amazing spirited, energetic 7 year old. He is an amazing brother and helper to his siblings.

Because we decided to stop chasing normal we were able to easily say yes when presented with the task of adoption. And if we are being completely honest I didn't even consider adoption before the day it landed in our lap, we checked our facts found out that unspeakable things are happening in eastern Europe to disabled children. UNSPEAKABLE... lets just say if it was happening here in america it would be considered malicious and we would be outraged. But not many are outraged because it isn't happening here, so people can easily just close their eyes to it. Well I can't . My children have showed me a love that defies normal. It is a special envious love that anyone would long for.

The children I plan to adopt have been neglected, starved, abused, abandoned, and until now forgotten about . one of them is dying and in need of full rehabilitation. One will age out this summer, and has endured things we can only imagine but don't. Once a child turns 5/6 they get a transfer to an adult asylum where the abuse really unfolds but you don't want to hear about what happens there. The 3rd child is blind, with a host of other medical needs. All three have the chance to thrive, my children are a prime example of how i know that to be fact. Here in america and other well developed countries the disabled are equal, in other areas of the earth they are shunned until death. I can't save the world. No one of us can, but we can make it better one life at a time and if enough people follow there will be triumph. If only 1 in every 500 people would adopt there would be no more orphans left in the world. Sadly it is to easy to turn a blind eye, and not many adopt nor support those who are. Today I encourage you to stop chasing normal, and chase reality because the reality is scary and we need to change it FAST. My favorite quote is by Mother Teresa ''NOT ALL OF US CAN DO GREAT THINGS BUT WE CAN ALL DO SMALL THINGS WITH GREAT LOVE.'' When you are chasing normal the task of adoption seems HUGE but in reality it is a small act with a GREAT love, and LOVE MAKES US STRONGER.

If you can't adopt you can still help. Adoption is expensive and we ourselves are having to raise all of the funds to give these kids a loving home. you can donate to our family grant. There are also many other families fighting the great fight who can't do this alone. Check out the HOW TO HELP section on Reeces Rainbow to find more families who have said yes If you think you can stop chasing normal and take a huge leap of LOVE there are many children needing a home.

We stopped chasing normal and now we are chasing hope for these three.