Friday, October 29, 2010

Why Not!

I will get this out of the way upfront. This is one of my "soapbox" blogs. But it's been eating at me for several months now and I need write it down.

We have often heard it asked "Why does God allow bad things to happen to good people?" Books have been written about it, pastors have preached about it, and the world generally uses it as a poor philosphy to state that God is not loving.

Let's get it straight - life is not fair. We tell it to our kids all the time. Generally it's in a whining moment when we look at them at say "Get over it . . . life's not fair." But somewhere from the transition of childhood to adulthood we tend to forget that fact when more tragic events happen around us. We may not say it outloud, but down deep, if we truly think about it, our responses and statements to others when bad things happen come down to the base premise that says "you poor thing, you've been treated so unfairly, God is just not being fair with you since you are having to go through this burden".

Statements like "I'm so sorry for your loss, your child was taken so young", "It's not right you have cancer, you're such a good person", or "You didn't deserve this, what a horrible thing to happen to you."

Seriously! . . . SERIOUSLY ?. . . what are you really saying? (and let me tell you that being on the receiving end of such comments provides absolutely no comfort.) Are you saying that God is not in control of the situation? Are you saying that people are too good for anything bad to happen?

This past summer, in the middle of a worship service, the worship leader suddenly launched into a series of statements about tragic events that had happened in the life of people in the room. And he stated, 'Why would God allow a child like Titus who was born with so many physical defects be given to the Daily's?" 

I almost puked.

So, I'm going to pull no punches and cut to the point.

The question is not WHY did God allow, but WHY NOT? Doesn't the Bible state in James 1 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything."

And what is a trial? It's something that is difficult to go through. It hurts, it's tiring, it's long, it's tedious, it's painful, it has an affect on not just you but your relationships. But it has a purpose. It's a test of faith so that you may grow, mature, complete, and have joy. So WHY NOT? Why would God rob me of the opportunity to learn those things. The question is - do you see a the bad things that happen in your life as trials to go through to perfect the work of God in your life? Or do you see them as a inconvenience that God has cursed you with that you have to endure (but are certainly not happy about). It's all about perspective.

And let me address Titus specifically.

Psalms 139 13:16 states
"For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful,


I know that full well.


My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body.


All the days ordained for me were written in your book before one of them came to be."


See, no where does it state that I (or Titus) was made perfect or wonderful in the eyes of man, but in the eyes of God. God created Titus exactly the way HE wanted him to be and then developed a complete plan for his life.

Did God design Titus the way I would have? No - but nowhere in the Bible do I read that my selfish will prevails in tweaking God's design.

Has God planned a life for Titus that I would have planned? The answer would be YES if I truly believe what I have always prayed. And that is that I have always prayed that each of my boys would be obedient to God's voice, be a blessing to others, and have an impact for God in the world they live in. And without a doubt, I can say that Titus has had more of a far-reaching impact than I ever would have dreamed. His life and story has gone around the world. We have had a chance to minister to people because of Titus. And if you have ever met him, you know how pleasantly content he is.

Why did God place Titus in our family? So I will learn to love life and cherish every moment; so that I will look at all children, but especially those with special needs, with compassion; so that I will know that parents of children with special needs are unsung heroes who tirelessly serve the needs of their children above the needs of themselves; so that I will see beautiful design of God in the body of my child; so that I will appreciate the incredible servant that I am married to; so that my other children will learn that life is about serving others and not serving themselves.

And I live with the truth in 2 Corinthians that states 'our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.'

 Ok - it's now off my chest. I'll put the soapbox back in the closet.

Thursday, October 28, 2010

Strollers, Wheelchairs, and Carseats - OH MY!

Yesterday, Becky, Titus and I went down to begin the process of ordering Titus a new stroller. The Bugaboo Frog stroller that we have used has been fantastic (and it should be for the price). It has served us well with Tucker and Titus, but Titus is now getting so big that his feet are hanging off the edge - and he needs more trunk support. Plus, with school looming, he needed a better tool for transport.

Becky has spent hours researching different strollers and the sales rep had several there for us to look at. But since we are looking for a something that will be usable for the next 5 years, it became more apparent that Titus needed a wheelchair more than a stroller. We will go back for another appointment to review wheelchairs - I never knew there were SO many options. And at the same time, he's getting to the point that the car seat will be too small soon, and we needed to look at specialty car seats.

So, we are in the process over the next few months of getting a stroller, wheelchair, and car seat ordered.

And, of course, this opens up a new world of looking at access for Titus. Do we have room to transport a wheelchair or do we find a different vehicle that can be modified since the wheelchair will have tie-downs. And, how do we continue to keep the entire family in one car instead of having to take two cars. And, is the house wheelchair accessible - are the doors/hallways wide enough, how/when will modify his bathroom when the time comes, how can we modify the house to provide a better therapy room.

It's easy to get overwhelmed when looking at the next five years, but I know that the only thing truly important is today. I remind myself to not worry about tomorrow since tomorrow will take care of itself. And if I believe that God is in control, then I also have to believe that all things will work out (to him who loves God and is called according to his purpose).

Our main prayer request is timing at this point. All of these items have to be approved/denied by insurance before Medicaid will cover the cost. And getting approval or denial from insurance can take months. And we are praying that all decisions can occur timely and that we can be polite but firm with our phone calls to insurance.

Wednesday, October 27, 2010

Finally 6!

Today is Cade's 6th birthday. He has been looking forward to this day since Tucker turned 6 in July.

Time has flown since he joined our family 4 1/2 years ago. He has grown from a timid, scared, tired little boy to a confident, smart, (and sometimes outspoken) big boy. Cade has found his voice this year which is hard to do when you have 3 older brothers. If you get him one-on-one, he will talk your ear off and tell you ever family secret. He is full of ideas, full of creativity,  and loves order (he is my clean freak - just like his dad). In this past year, he has learned to ride his bike, is a whizz on his scooter, learned to read, and lost his two bottom teeth. And, the sweetest sound I hear ever week is when he stands on the pew in church with his arm around mine and I hear his voice singing praises (melts my heart every time).

Cader-tot - I love you dearly. Your big brown eyes still melt my heart. Your laugh is contagious and makes me smile. And your voice is music to my ears (except when you whine - but we are working on that). I love watching you grow up and learn. And always remember, God chose you to be our son. You were destined to be a Daily boy from the moment you were born.

Tuesday, October 26, 2010

Appointments

Yesterday, Becky and I met with the staff at the Frisco Early Childhood School to review the activities and evaluation for Titus. When Titus turns 3, he is eligible to be evaluated and attend the Early Childhood School. Titus has been receiving therapy through Early Childhood Intervention (ECI) services for the last couple of years, and this is now the next step.

Our emotions are all over the place on sending Titus to school. The thought of sending our medically-fragile, tender child to school for 3 hours a day is overwhelming. The thought of not having in him the house being cared for by us in the mornings is unthinkable. The thought that we can put him on the bus to go to school puts me in tears.

But, the thought of him being in a learning environment with one-on-one instruction for 3 hours is wonderful. Meeting his teacher and seeing how she handled him with tender loving care touched my heart. Seeing the classroom and all the fun toys provides me with a sense of knowing he will have fun while learning.

But he's just my little boy - he's just turning 3 years old. And none of my boys have ever ridden a bus to school (of course, we can take him and pick him up - and it's just a few miles from the house).

Our intake meeting yesterday was long. Becky was prepared for her questions and what to ask for. But basically, the first 45 days of school, Titus will evaluated. After the evaluation, they will develop and Individaul Education Plan (IEP) for him with the goals for his school year. We (parents and teachers/therapists) all have to agree on the plan, goals, and objectives for the IEP. But yesterday's meeting was to agree on the plan during the evaluation period. And since Titus will be in school, his at home therapy through ECI will stop - so therefore we wanted to make sure he would still be receiving the same services at school during that time.

We did develop a plan and agreed to Titus going to school 3 days a week instead of 5. Which will also keep him attending his private therapy on Tuesday and Thursday. And we did agree that we will take him to school at the begining.  There is some paperwork to get through, but November 15 is just a few weeks away.

Titus also had a recent visit with his ENT to review that status on his cochlear implant. The audiologist is pleased at how Titus responds when his cochlear is on (and we are too).

Titus also had his annual visit with the cranofacial surgeon. The good news is that his jaw is stable. But it appears that Titus skull is not growing. The skull grows as the brain grows. Without any other testing but measuring his head, it "appears" that his brain is not growing since his skull is not growing. But when Becky asked what that meant, the answer came back "I'm not sure". Again, it's another area that we could really worrry about, but then we also look at how much Titus is learning, how cognizant he is, and we have again have to trust that all of this is part of God's plan for Titus' life.

Titus has been growing though - in fact, he's pretty much outgrown the Bugaboo stroller that we have used for the last 3 years. We never dreamed when we bought that stroller for Tucker 6 years ago that is would have been a perfect tool for Titus these last 3 years. The next logical step is to find a transitional stroller/wheelchair. Tomorrow we have an appointment with a sales rep in Dallas to look at several different ones. Again, this is another leap of faith and learning since we know very little about wheelchairs. Beck has developed a list of items we would like to have on it - but one of the key items is that it's easy to transport and fold down. And, once we decide, it could take up to a year before insurance approves it (or insurance denies it and Medicaid pays for it). Your prayers in that area would be appreciated.

We do have a fun week planned ahead - Cade turns 6 on Wednesday (he can hardly contain himself), Noah has a football playoff game, Tucker has baseball, and we are attending the Korean Festival on Saturday. And then Sunday evening we will be busy collecting food for Scare Away Hunger (and I"m sure the kids may get some candy along the way).

Sunday, October 3, 2010

My Life is a SItcom

Let's face it - our life is a sitcom. Many people have commented that we would make a great reality show, but I don't think TV land is really ready for "The Daily Life" - most people wouldn't believe the things that go on.

It's been a jam-packed weekend - too busy for our own good. For years, we have tried to not overbook the boys into too many activities so that our own family time would not be impacted. But this Fall, something happened, and we catch ourselves running between football practice/games for Noah, baseball practice/games for Tucker, and drama rehearsals/shows for Aidan. Someone was literally somewhere everynight this week - and often two or three of them needed to be somewhere at the same time. This is in addition to all of Titus therapy's and doctor's appts, and the homeschooling (and homeschooling activities) that go on during the week.

It has been so busy, that we haven't had one family dinner in 2 weeks. So, Saturday, we were determined after football practice and the Frisco Arts Festival, that we would have dinner prior to taking Aidan back for the inaugural performance in the new Black Box Theater at the Frisco Discovery Center.

I asked Tucker and Cade to clear the table as Becky was cooking dinner. I noticed Tucker pick up the phone, but did not pay much attention. A few seconds letter, the phone rang. Aidan looked at the caller id and handed me the phone saying "It's the City of Frisco".

As I answer the phone, I am immediately asked "Is everything ok?"

"Yes", I answered.

"This is the City of Frisco Emergency Services. Someone from this phone number has called 911. Can you verify your name and address?"

I looked at Tucker and asked gently "Tucker, did you dial some numbers on the phone"

"Yes"

I told the lady on the phone that it was a childish accident and apologized. But then she stated, "It's our policy to send the police to verify that everything is ok. They will be there shortly."

I hung up the phone and let Becky and the boys know that the police would be stopping by to verify that we were all safe.

Tucker suddenly lost his appetite. All the assurances in the world would not stop the feeling of dread that came over Tucker.

So, our quiet family dinner turned into a larger circus with two very nice policeman from our local police force. As soon as they walked in the door, Tucker began to whimper. I silently prayed that this would not be a time for Tucker to have a nosebleed since I knew the presence of blood would probably not convince the police that "everything is ok". (Tucker has been having horrific, gushers of a nosebleed lately that would convince you he is hemoraghing) .

One of the officers came to the table to talk to the family and kept assuring Tucker everything was ok, but I did notice that the other policeman hung back in the living room and his eyes were scanning EVERYTHING. I somehow got the impression he wasn't admiring the beautiful fall decorations we recently put around the house, but was looking for the out-of-place body part sticking out from under the sofa.

Tucker gathered up his courage and shook the officer's hand and walked them to the door. And we sat down to salvage the rest of our meal before Aidan had to be at the theater.


By the way, Noah's football team one their first game this past Saturday. (Now, this wasn't their FIRST game, just the first game they won). But the smile says it all.