"Dear Lord, give me the strength to face the day!"
This is the first thing I say when I open my eyes in the morning. This is 90 percent of the time done on the chair downstairs as this has my bed the majority of the time. oh there is so many things wrong with that but what are you gonna do? This is our normal for being blessed with what we have been given.
In 2011 we surpassed our record with flying colors in the medical and disability realm. See, don't tell me the Schillings aren't good at anything :). My 2 boys are already going for a record to try to beat it this year. Here is what is going on with the family in an attempted summary....
Ethan. On the outside he is doing so well. He is so happy most the time and is such a joy. He is a 2 and half year old that has been through more than most adults can say they have. Our recent discovery is that he has a bifid uvula. It means that it did not close all the way and is the mildest form of a cleft pallet. Wow, after a dozen scopes, and over 2 dozen doctors looking in there hundreds of times...now you find this?!?! Well, it has gotten the geneticist even more intrigued and has stumped now most of his regularly seen 11 doctors that everything going on with him is in the midline of his body. From the fused skull to the brain surgery to the aspiration, his bifid uvula all the way down to his boys not falling where they are supposed to fall. What does this mean...more blog today, more next week to go Houston to ty and see what is happening. To the geneticist it points more and more to a syndrome. Also, we now get to go see a cardiologist for a sedated and echo and other tests since this organ falls midline as well. Dear God, please don't let there be anything wrong with the heart....I think mine will break if his is broke... You see, 3 out of the 5 days of the week, my lunch consists of holding Ethan down for some tests or blood drawn or something that has to do with scrubs, a white coat or latex gloves......you think I would be skinnier by now.....so my little man has gone from coaching a baseball team of doctors to now heading up a football team with. A few on the side lines ready to jump in.
Then there is Nick.... Another life full of joy and innocence and thankfully that is how it is because Jackie and I sit everyday watching him slowly deteriorating. What do his doctors say? "for my area of speciality he looks good...go try ________!". Really? Over the past 8 months Nick has been diagnosed as failure to thrive on top of his other 5 disabilities. He is on a 5000 calorie a day diet just to maintain weight as long as he does not exert any energy. Even though he has CP, you try and stop a kid with autism from exerting energy...."ok...... He now uses a push chair/wheel chair for long distances and his gait and mobility is worsening. Even though he has a super high pain tolerance he will now tell you that his hips and knees hurt if of ask him. It is amazing because he does it with a smile and he never complains. The orthopedist recently did X-rays and tests and says that besides one femur being a little longer than the other everything, orthopedic ally, looks fine. She feels it is all neurological. What the ?!£$ does that mean? Is he having roe seizures, what condition does he have, is it going to get worse? Again, no one can tell us .....the big thing that scares me is we already had to get a minivan cently ochre could transfer easier into a car but we have a 2 story house and all the bedrooms and bathrooms are upstairs......ay dios mio! Next stop for him is back to neuro for more tests....
Then there is the diva Kiki......HOLY HELL, she is going to be trouble when she grows up. She has gone through seeing all this go on with her brothers and sees everyone caring for them it has really thrown her for a loop. She now gets to go to play therapy once a week and she is super excited. So much so that I had to talk to her teacher because she is telling all her classmates that she gets to see a therapist like her brothers. She needs this. It is all about her and she gets to run the show. She can rank 4 of the major local hospitals by there child life specialists rooms. Last time we were at the ER she told the doctor that she like dthe other room better that we were in last time because she liked the painting better. Really? She is a small version of her daddy. I have to met anyone so stubborn and strong willed. She will do well for her brothers. She is strong and beautiful.....
Jackie is the rock at the house. Yes when we are actually together for some appointments I am the one that loses it or cries and she is let's take it day by day. I don't work like that. I research, I ask, and I doubt everything in the medical field. The doctors are human, I get that, but it is not ok to do some of the things you do and try to get away with. I stay up late for night emergencies or autism wake ups or seizures so she can get up super early to do the tube feedings and medicines. She is s tired .....all the time...it breaks my heart.
Not sure what to do anymore . I work 2 full time jobs and come home to give her a break or pass out jut for a few minutes so I can get back to work.......
This leads us to the space invaders :). Without these space invaders, our life would not function and someone would have had to admit Jackie and I into a residential facility (hey, at least we would get some good drugs and sleep :))
Everyday of the week we have at least 1, more often, 5 people other than us in our home. During the week Ethan has 5 spech sessions for vital stim and language, 2 OT, 2 PT, a nurse, ECI and at least 3 to 4 attendants. Nick brings in 2 speech and 2 PT with a few attendants of his own. The attendants are phenomenal. So much that I have hit up a few to possibly come with us on a vacation at the end of summer....we will see if that happpens... They are truly part of our family and we love every single one of them as they love our kids.....
This weekend, for the first time in 6 years, Jackie and I will be gone from home and kids for a total of 36 hours. We are super excited and nervous. So nervous about the boys that we are only going 10 miles away in fear that there will be a hospital trip. Now, granted, we will probably sleep for 30 of those hours, but it will be so nice to wake up and not have to jump out of bed. It will be nice to sleep in a bed, with my wife, what a concept!
I am truly blessed. Despite all this going on, my family amazes me and it is through Christ alone that I get the strength to fight and support my family. He is in control....sure I let him know that if it true that He gives us only what you can handle, I tell him his expectations are too high :)
Not only do I find strength for my boys, but for the hundreds of people I work with that have disabilities. If I had to work with this many neuro typical people I would have jumped out of a moving car by now. People with disabilities, including my two boys, are the most under served population. I have been blessed with the gift of serving in the disability community.
Through Him, the strength is provided to face the world on a daily basis. And, if you know how stubborn and strong willed I am, I will not give up and I will not stop fighting for my family. If this is how it is going to be for my time here on Earth, so be it, jut bring on some Diet Coke and some prayer and all is good :)
