Unexpected Joy

We have been waiting to share this with you.

Several months ago, we were approached by Fotolanthropy with an incredible opportunity. Katie Norris Photography and Jonathon Link Studios spent the day with us taping and taking pictures of Titus and the the family. Becky and I had a chance to share about Titus' story and the journey of the last 4 years.

And here's the result.




You can also see the results here.
http://www.fotolanthropy.com/2012/03/fotolanthropy-unexpected-joy/
We are thrilled. We are humbled. We are blessed. Please pass along the message of Titus and the mission of Fotolathropy.

Home Again

Titus was released this morning from the hospital. But we've learned, just because the doctor says your are free to go, you still have to wait for your discharge papers. So, several hours later, Titus and Becky were home.

I took Titus and walked into his room. And the moment, I stepped in his room, he "leaped" in my arms. Literally, he jumped/moved/shaked. He KNEW he was in his room. He KNEW he was home. And the smile on his face said it all - "it's good to be home".

He took a great nap this afternoon - and so did Becky and I. She layed down on one sofa and I layed down on the other one - and we both believe a bomb could have gone off next door and we would have slept through it. It was good to have some restful sleep.

Thank you for all your prayers, notes, phone calls, and visits. We so appreciate your kindness to us.

In many ways, these hospital visits are memorials for us. I can't walk into the halls of Medical City without thinking of all the months we spent there. Every time I ride the elevator and it stops at the 4th floor (NICU) or 5th floor (PICU), memories flood back. Every time I see a family get on the elevator from one of those floors, and I see the emotion on their face, I remember. The long hours spent in the quiet rooms listening to the sound of the monitors, watching my son struggle for his life are thoughts that will never leave me. They are a memorial - a remembrance of a time where God showed me that He has a plan, He is always faithful, He will carry me through.

As you celebrate Memorial Day this weekend, I challenge you to find the memorials in your life - those times that are marked with memories that have shaped you into the person you are today. And I challenge you to share those memories with your children, with your friends, with your family. If we don't, then those memorials will lose their meaning.

Joshua 4:21-24 states  "He said to the Israelites, "In the future when your descendants ask their fathers, 'What do these stones mean?' tell them, 'Israel crossed the Jordan on dry ground.'  For the LORD your God dried up the Jordan before you until you had crossed over. The LORD your God did to the Jordan just what he had done to the Red Sea when he dried it up before us until we had crossed over. He did this so that all the peoples of the earth might know that the hand of the LORD is powerful and so that you might always fear the LORD your God.".

And last of all, remember our patriots who gave their life so that we may live free in America. May their memory never be forgotten, may their bravery be remembered, and may we tell our children that we live in a land of freedom because of the sacrifice of so many who were willing to serve, willing to fight, and willing to take a stand for what is right.

Go and Be

We did Church last Sunday.

Preacher didn't say a word.
Choir didn't sing a note.
Ushers didn't pass the plate.

But the Church showed up in a mighty way and it was incredible see the Church in action.

Last weekend was 'Go and Be' weekend - part of our Transform Your World program. For the last 3 years, we have closed the doors to the building on Sunday morning and gotten the Church to go out in the community and serve. This weekend, our family served in Garage Giveaway - everything was free to families in need. And you would not believe the amount of goods and food and services the church had to offer. A grocery store in Waco delivered 3 semi's of food, a local manufacturer of women's clothing delivered several truckloads of brand-new clothes (tags still on), the community donated clothes, toys, furniture, and appliances. Bounce Houses were set up for the kids, free haircuts were given, free eye exams were given, and the list goes on.

Thousands of people in McKinney showed up and the Church was there to be the arms, hands, legs, eyes, and ears of the body of Christ.

And that is what Church is . . . it's not the building, it's not the service, it's not the preacher.

I think we have lost that focus over the last few generations. So much emphasis has been put on the building, or the style of worship or the personality of the preacher/staff or the programs. And that's not the Church. The Church is believers of Christ serving others. . . plain and simple.

And that's the other part that we have sometimes lost focus on. . . It's not about serving each other in the building, it's about serving OTHERS. And as a very wise man's wife says (shout out to Deanne R) "you can't meet their spiritual needs till you meet their physical needs.

And that's what Go and Be was all about. This year, multiple churches in the Dallas area were involved. We've used several slogans such as "the Church has left the building" or "Don't Go to Church . . . Be the Church". But what ever we say, it's been exciting to see more and more people get involved.

Aidan and Noah were great helps this year. Both boys helped unload trucks and cars that were donating supplies for the Garage Giveaway on Saturday and Noah helped with landscaping and teacher's gifts at Finch Elementary. Becky and I helped in several different areas - from unloading to registration. But for me, not only was it a joy to serve along with other believers, but it was a joy to see my boys learning the true meaning of being the Church. They worked hard, without complaint, and with a smile on their face. And my prayer is that as they grow, they continue to selflessly give, work tirelessly, and serve others.

And for those of you reading, I pray you find your part in the Church. And I have to ask - What is your function in the body of Christ - and are you using it (or sitting on it)? Are you "attending" or "serving"? Are you taking care of the needs of those around you (especially those families with special needs kids)? Are you asking "how can I help you" instead of "wasn't that a good service (for me)."

GO . . . and BE!

Through the Dust

After yesterday's soap-box, I realized there were a few more things I wanted to share - and this is more about Titus and what we have learned. And what we as parents of kids with special needs can do.

I mentioned there are a lot of misconceptions about Medicaid. Initially, I thought we would never qualify since we had private insurance and I would exceed the salary requirements. I was always under the impression that Medicaid or state programs were only for those who could not afford private insurance.

This is not necessarily true. Many of the state programs in the state of Texas base their acceptance on the child's need, not the parents income. For us, Titus is considered Medically-Dependent - and through a several month-long process with help and assistance about the waiver program, Titus was accepted into the Medically Dependent Children's Program (MDCP) which approved him for Medicaid. But some children wait for years to be approved. For Titus and our family, this has been a blessing. It has provided a budget for nursing, aides, therapy, toys and other items that private insurance would not pay for. But for families that are still waiting, they carry the burden and cost.

And while I am very grateful for the assistance, it can also be overwhelming at times to realize your child is medically-dependent. In layman's terms, my child relies on pharmaceuticals, oxygen, 24hr care, and therapy to live. Without oxygen, Titus would not maintain his oxygen saturation and eventually (and quickly) erode his body. Without the medicines and breathing treatments he takes multiple times a day, his body would easily succumb to infection and secretions. Without therapy and nursing care, his muscles and eventually his cognitive abilty would waste away.

If I allow myself to dwell on the facts that my child is medically dependent to live, it could easily sink me into depression and grief. And I have had those times. As our incredible pastor, Dr. Jeff Warren at First Baptist McKinney, shared with us early in this journey - we will grieve. And we will grieve at various times throughout his life. At the time, I didn't understand that, but after 2 and half years, I am beginning to understand this. There are days the grief of "what I thought should have been" are overwhelming. There are days I can't look at another 2 year old child who is walking and talking without tearing up. There have been days I have just pulled my car off the road and cried. And I had to learn that doing so is part of the process of acceptance. But it doesn't stop - grief sneaks up on you when you least expect it some days.

Yesterday, I listed things you could do assist a family, but today, I really want to address parents of children with special needs. And, I would actually love to get your feedback and responses. But if you are reading this and you just found out your child has a special need, here's what I would encourage you to do.

• Educate yourself - learn all you can about your child's disabilty. Join chat rooms, forums, read research papers, find the experts in the field and see what they say, but learn all you can.
• Once you learn, be open and realistic to the outcome for your child. Accept who they are and what they can and will be able to do.
• Along with the acceptance of your child's needs, you also have to let go of your hopes and dreams you had for this child. Your child will take a different path than others - one that you did not choose, but a journey all the same that will take both of you on a trip you never expected. You can choose to be open to the new journey or be bitter for what will not happen. Bitterness can destroy you - and although hard to let go of "your" dreams, you have to accept that there is a another plan for your child. 
• Don't get mad at God. Frankly, as I see it, He made me and can easily take me out if I get in the way. But Psalm 103:14 states "he knows how we are formed" and Psalm 139:14 tells me "I am fearfully and wonderfully made." God did not make a mistake when He formed your child. He did not turn his back, did not forget, did not ignore your prayers. He has a plan and made your child the way he is for a purpose. 
• Ask for help when you need it and accept help when offered. This was very hard for me at first. I didn't want people cleaning my house, cooking meals for me, doing my laundry, watching my other kids. I wanted to be super-parents who could do it all. But we aren't designed to live life independently like that. As Hilary Clinton named her book "It Takes A Village", you will need to learn that it takes a village to survive and help your child. And through that,  you will learn what community means, what family means, what serving others means. You will learn to share and be vulnerable. You may learn that you have a nurse or aide in your house when you are asleep (and have to remember to not go to the kitchen for a drink of water in your underwear in the middle of the night.) You may learn to be elbow-to-elbow with a nurse in the kitchen when all you want is a cup of coffee.
• Find a support group. You are going to need someone to talk to, cry with, ask questions of, be vulnerable with. Your immediate and close friends may not understand what you are going through - but true friends will be there as a shoulder to cry on, arms to lean on and prop you up, and prayers to ever sustain you. If you isolate yourself from your friends, they are not going to know how to help you out.
• Stay true to your marriage. Be prepared that this will be hard on your marriage. Don't get jealous if you feel your spouse is spending more time caring for the child than they are with you. But also realize that you will need to train others to care for your child so that you can spend time on your marriage. Make the time. You will need each other more through this, especially in the early days as you learn about all the disabilities your child may have and what type of life they may be facing. Even in the midst of it all, remember that you vowed "through better or worse, through richer or poorer, through sickness and health". This will test those words - stay true to those vows.
• Find a special needs financial planner in your area/state who can walk through a life-plan for your child. You do not want to make a foolish mistake that could disqualify your child for state programs for life, nor do you want to unknowingly pass up aid/support that is available. As hard as it is to think of your child's future when they are very young, you do not want to wait to late to make a plan for their long-term care when you will not be able to care for them or not around.
• Find time to play with your child. Your child needs to be held, loved on, kissed on, and played with. He is still part of your family. If you have other children, teach them how to play with your child. I can tell you there is nothing sweeter than when I see one of my older boys get down on the floor and care for Titus. Titus knows his brothers and he knows he is loved by them.
• Include your child in family activities whenever possible. It may be very difficult to take your child out in public. I understand that - there are days you don't want the stares or questions by strangers. But, don't rob yourself of keeping family activities and traditions they way you always have. It may take a little more planning and time, but take your child with you if possible. Titus goes to Tucker's baseball games, Aidan and Noah's swim meets, goes to store/mall shopping with us, goes to church with us. Yes, it means taking oxygen with us everywhere. And yes, unloading and loading the stroller get's old - but he will eventually have a walker or wheelchair, so it is not going to change. It is now just part of the routine. And trust me on this, you taking your child out will inspire others, will educate others, and will show others that a child with special needs can still be part of family activities. Know that your vacation plans may change, but still take a family vacation.
• And as I mentioned above, remember it's ok to grieve. Let it out but don't live in it.

Through the last few years, I have learned to live Psalm 23 "the Lord is my shepherd, I shall not want". Having a special needs child didn't test my faith, it has deepened it. It has taken me to some deep valleys where I have had to learn that God is truly my provider, my redeemer, my salvation.

Have I questioned God? - many times.
Have I got mad at God? - of course.
Have I screamed out WHY? - yep.
Did He ever leave me or forsake me? - never.

And that is where I have learned that "God will make a way, when there seems to be no way. He works in ways I cannot see, God will make a way for me." (thank you Don Moen for penning those beautiful words to that song). So I carry on "through the dust". And I pray you will also find your way "through the dust".

There was a Time . . .

It's been said that true life is stranger than fiction . . . and there are day's that true life is funnier than anything your imagination could make up. Last night was one of those nights.

Becky stayed at church for choir and Aidan stayed with her to hang with friends. As I was driving home from church with Noah, Titus, Tucker, Cade, and Nurse Lisa, Tucker announces from the back seat, "I gotta go to the bathroom".

Dad: "Tucker, you will have to wait till we get home."
Tucker: "But Dad, I gotta go Big Poo!"
Dad: "You can hold it."
Noah: "Maybe you can stop along the side of the road and he can go just like the dogs".
Dad glaring through the rearview mirrow: "Noah, that's not helping".
Tucker: "Dad, I REALLY GOTTA GO!"
Dad: "Son, you can make it."


Well, Tucker wasn't the only one who needed a restroom. All through Bible Study, I had been sipping on a Big Gulp of Diet Coke, and my bladder finally indicated it was about as full as it was going to get. But I am an adult - I can hold it without announcing it to everyone in the car.


We pull in the garage and it takes 5 minutes for everyone to get out of the car. Why it takes Tucker and Cade 5 minutes to get out of the Suburban when both of them had stated they needed a restroom, I do not know. I do know that Cade had to get out of the backseat first before Tucker could get out, and I do believe he was using this little bit of control as a show of power over his older brother.


I unbuckle Titus and take him to his room while Lisa begins his nighttime routine of therapy and meds.


I take the puppy outside since he's barking incessantly and he also needs to go. I come back in the house to go the bathroom and the hall bathroom door is shut. Cade announces he is in there. I go to my bedroom and to use my own bathroom, but Tucker announces he is in there. Noah (the ever helpful 2nd born) announces that I should go upstairs. My legs were shaky enough at this point that I informed him I was not walking upstairs and should have priority over my own bathroom.


And then I hear this from Tucker behind the bathroom door, "Dad, I pooped on the floor".


"You did WHAT?"


"I couldn't hold it and it slipped out and I pooped on the floor".


At this point, I'm not sure what came over to me, but in disbelief I told him to open the door and show me.


And, yes, sure enough, there it was.


And this is when my mind went into a deja vu fog of what my life use to be.


There was time I lived in a spotless, immaculate house with a perfect weed-free lawn. Now, I step over legos and dog toys scattered all over the house and stare in disbelief at the weeds that have taken over my back yard.


There was a time when I drove a luxury sports coupe and enjoyed the envied stares I would get as I drove by. Now, I drive a mini-van with stow-n-go seats (and no one stares in envy except the occasional soccer mom).


There was a time my evenings were quiet, I could sit in a comfortable chair, and I ruled the remote control. Now, I sit in the back of the living room while my two oldest lounge on the sofas with a grip on the remote control.


There was a time I went to the movies and enjoyed the entire experience of surround sound and large screen action. Now, I go to the movies once a year with 4 boys to see an animated feature but I miss portions of it shuttling little ones to the bathroom.


There was a time I bought clothes that were NOT on sale - if I saw it and I liked it, I bought it. Now, I shop twice a year, at Dillards end-of-season 75% off sale (and if I'm lucky I hit the additional 30% off weekend).


All of these thoughts flooded my mind as I stared at floor. Tucker finished his business, and ran off to bed, and I knelt on the floor to clean up the mess (and mop the floor, and scrub my hands). An hour ago, I had been emailing a senior Vice President on salary and bonus bands for job categories, and now, I'm on my knees scrubbing the floor - such is life.


I Thessalonians 4:11 states to "Make it your ambition to lead a quiet life, to mind your own business and to work with your hands"
There was a time when life was all about me, all about what I wanted, all about my pursuit of happiness. And that was part of the problem - it was all about me. It took years for me to realize that life was not about me, not about seeking attention for myself, not about getting what I wanted.


There is a joy in serving others. As a husband, I will do anything for my wife - go to any lengths. As a dad, I love my boys like nothing else in this world and will protect them, serve them, (and yes, clean up after them). And as a Christ-follower, I long to see the world through his eyes so that I may serve Him and serve others.


So I smile, I laugh, and I enjoy the life and surroundings that God lets me experience.

Quick Update on Titus

Titus went to the doctor on Monday for a follow-up on his ear infection. His ears are clear of infection and there is no fluid buildup behind his left ear. Just by the way he was acting, we felt the antibiotics had cleared everything up, but it was good to have it confirmed.

With Titus, we have learned it's the very small things that are the victories in his life. The smile of recognition of a toy, the way he reaches out to touch me or leans over when I sit down next to him, the way he chuckles when placed in his bed, the open hand that reaches out to explore instead of a closed fist.

And I am reminded that's the slow and steady of repetition and therapy that mark the improvements we see. I was reminded of this verse today during some other discussions and it's very apropos for today.

Habakukk 2:3 (New Living Translation)
"But these things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, wait patiently, for it will surely take place. It will not be delayed."

I do have a vision that one day Titus will be able to sit unassisted, but it won't be this week, this month, and maybe not even this year. But I do have a vision.
 
I have a vision that one day he will use a walker to enable him some movement. He is working very hard at it and it will take a lot more work and stamina and patience, but I do believe.
 
And I have a vision that one day in eternity, I will see my son walking and dancing and singing and seeing all the glorious colors of heaven. As hard as it is to see my son trapped in the constraints of his earthly body, I know it's only temporary in the light of eternity.

My Story - Aidan

As Aidan has prepared for his AWOL Belize mission trip, he wrote out his testimony. And since our pastor's series at church is "What's Your Story?" and there's an associated website (http://10000stories.org/),  Aidan has put his testimony out there.

But, I wanted you to read what he has to say - I am so proud of my son and ask that you pray for him this week as they minister and witness to people in Belize. There are 48 youth that went on the trip and they will be working in 11 different churches in Belize City. Several have asked of us if we felt nervous about Aidan going overseas without one of us and our answer is "no - we have a total peace". And we know it's because God provides a perfect peace when you know you are doing His will (or your son is obedient to God's will.)

So here's his story.

My name is Aidan. I am a 7th grader at First Baptist Church of McKinney. I have gone to church all my life, ever since I was a little baby and have never been perfect. I have always whined and complained just as much as everybody else and I always said “Thank You” because my parents told me to. I always felt empty and that I lacked something on the inside. I became a Christian when I was in 1st grade when my teacher asked if anyone would like to become one, but I did not quite understand what it meant and was to shy to go talk with the teacher about it. I told my parents several months later when my mom asked “Are you a Christian Aidan?” My dad sat down and talked with me about it. Many years later I went to a Student Life conference when I was in fourth grade with my dad. This was when I really got in touch with the Lord. He spoke to me and taught me how to worship. Then when I was in 6th grade my church did a kick start weekend which taught me how to pray. Then my parents had a baby. His name is Titus. Titus has some special challenges, he could not swallow and it is very hard for him to breath. Titus has helped me to understand the power of prayer and that I needed to trust God with everything even my little brother’s life. I now believe with all my heart God sent His one and only son Jesus to die on the cross for my sin and yours to. Jesus loves you so very much and wants you to be a part of His family. I now thank God everyday for that, and ask him to forgive my sin. I feel so full of the over- whelming love of Jesus Christ. Now when I say “Thank You” I say it because I am thankful to the Lord for giving me things to be thankful for. Do you want to become a Christian? If you do just pray to Jesus tell Him that your sorry for your sins and to forgive them, ask him to come and live in your heart. I hope that is what you want if you do He’ll give it to you completely for free, all you have to do is ask.


In Christ’s love,

Aidan

I Am Second

Life can be crazy . . .
Life can be busy . . .
Life can be scary . . .

But, Life can be good.

When I reflect back on the past year, I don't think there is anyway I could have survived without knowing that I am second. There were days I only wanted to think about me, take care of me, satisfy me. And, honestly, there were days I did. But circumstances kept putting me back in my place and on my knees.

Let's face it, being second takes work. It's hard putting God first. My personal nature would much rather take that spot.

But, it is amazing how God has a way to put all things in perspective and make you realize that the best place for me to be is second. Second to a little baby in a manger, Second to Holy of Holies, Second to the Creator, Second to the "I AM".

Last night, Titus was a little fussy around 1am. And, I couldn't sleep, so I went in his room and scooped him up and settled down into his rocking chair. I wrapped him up in his blanket, and kissed his forehead. Titus reached his hand out and stroked my arm - knowing by touch it was his father. He then grabbed my finger and went to sleep . . . a peaceful, deep sleep. And I thought, that's being second. Submitting to the touch of his father, wrapping his tiny hands around his father's finger, and resting . . . knowing that it was the safest, warmest, happiest place he could be.

I need to do the same . . . submitting to the Father's embrace.

If you live in Dallas, I'm sure you have seen the bill boards with the words "I Am Second". A friend of ours has developed this incredible website - http://www.iamsecond.com/. I encourage you to check it out.

And live your life striving for second.

In 2nd Place,
Paul

Hearing Aids

Titus received his hearing aids yesterday. This will probably bring his hearing up from profoundly deaf to severely deaf, but will stimulate his hearing for the time leading up to the cochlear implants. Titus can tell a difference - he is really looking around for the noise and was even imitating some sounds yesterday. What a thrill it is to see this. Now, keeping them in will be a challenge - we do have both of them tethered together on string that clips to his clothing, but the aid has to make a good seal in his ear - and if not, they squeal.

Titus also had a follow-up visit with the pulmonologist yesterday about his sleep test. It appears that Titus is waking up multiple times in the night and not going into deep REM sleep for long periods of time. Since this could affect his growth/development, they are looking at a new breathing machine at night that will assist his sleep.

After that dr. visit, Titus had a follow-up appointment with the ENT for a genetic test - and as usual, they decided to do blood work instead of a cheek swab, so Becky will be taking Titus down to Children's Hospital for the blood work today. And, the doctor has a little concern about the back of Titus head (he's developed a little bit of a ridge) so we are going back to the neurosurgeon to make sure his skull is fusing correctly.

At the same time, Cade had a visit with the ENT. Cade lost his hearing in his right ear after he was born. Cade spent several weeks in the hospital in Korea with CMV when he was a few months old. We want to make sure his hearing is continuing to remain strong in his left ear and there is no more damage or continuing loss in his right ear. Cade did great on his sound test and they are going to look at a hearing aid for his one ear - along with doing a MRI to better define the reason for losing his hearing after he was born (The ENT is not convicned Cade had CMV).

There was a time if I had heard all that information in one day, I would have been overwhelmed. But, having 3 doctors visits (plus a therapy visit that I didn't mention) in one day, getting news about additional therapy, additional treatments, etc is just par for the course. As I was driving home last night after work, I realized what an incredible journey this is. It's not one we were expecting, but one that is teaching us so much about God's provision, God's plan, and faith. And the old gospel song came to me:

Why should I feel discouraged?
Why should the shadows come?
Why should my heart be lonely
And long for heaven and home?
When Jesus is my portion
My constant friend is He
His eye is on the Sparrow and I know he watches me.

"Let not your heart be troubled"
His tender word I hear
And resting on his goodness
I lose my doubts and fears.
Though by the path he leadeth
But one step I may see
His eye is on the Sparrow and I know he watches me.

I sing because I'm happy.
I sing because I'm free.
His eye is on the sparrow,
And I know He watches me.

Titus Update: MDCP

Over the last few months, we have been working on getting Titus approved for MDCP: Medically Dependent Children's Program. This is a state of Texas run program that will provide us a budget of dollars to be spent on nursing care, therapy, etc. It also approves Titus for Medicaid. We received the Medicaid approval several months ago, and have been going through the paperwork to finish the process. Our paperwork was completed several weeks back, but for Titus to be put at the top of the list for approval, he had to spend a day at a state-approved nursing home.

Yesterday, Becky and a friend, Marti, drove Titus to Gainesville, Tx (an hour north of here) to check in prior to 5pm and then drove back late last night.

As Becky stated honestly, this wasn't the happiest place to be. For many of the elderly that lived there, this is simply their last stop on this earth. The strong medicinal/antiseptic smell permeated the air, many were sitting listless in the lobby, but they loved seeing a baby in their midst.

After they checked in, Marti ran back out to the car to retrieve some of their stuff and she over heard this conversation on the front porch. As she described it, two elderly women were out on the porch. One looked at the other and stated "Hurry, come out here - look at this beautiful day." And the other replied "Yes, how beautiful - This is the day the Lord has made, let us rejoice and be glad".

What a reminder that no matter what state or place we are in, we should rejoice and be glad.

Now that Titus has Medicaid, he is able to return to therapy - which will eventually be 4 days a week. He has made great progress. Developmentally, he's at a 3 month stage; Socially, he's at a 5 month stage. He's improving his control on holding his head up and we are working on him rolling over. He has found his toes and will lift those up and grab his toes and play with them. As I've stated before, he is still the happiest, most content baby you have ever been around.

Thanks for all the prayers - and please continue to pray for his development and therapy.

Iron Sharpens Iron

As mentioned last week, we had 3 extra kids stay with us for the week. What an incredible time we had last week with 8 kids in the house. Now, I know what most of you are thinking - "you guys are CRAZY!" But, can I tell you how calm and peaceful a household can be when you have 8 well-trained kids. Conflicts were minimal, fun was had, lots of laughter was shared. It was like eating with the Waltons every night for dinner (and you can't imagine how quickly the kitchen was cleaned up after.) Now, I'm still finding Nerf darts all over the house from the incredible Nerf Gun War. We'll eventually get them off of all the high window ledges.

The kids wrapped up their music camp with their program on Friday night and then an encore performance on Sunday morning for children's church. They were awesome.

Becky is so ready to have a 14 year old girl after having Ashley last week. I did have to correct her and say "not just any 14 yr old girl, but one who has been raised with Biblical principles like Ashley".

So, Ashley, if your reading this and ever want to run away from home, you have a home with us. And, please bring Morgan and Leighton too.

Mike and Jodi K, the incredible parents of Ashley, Morgan, and Leighton came for the weekend with their other 2 kids - which just added to the fun. I think the 4 of us talked non-stop (which isn't really hard for Mike and Becky - but I do think Jodi and I will say our mouths might be tired from the talking).

As usual, Mike and Jodi encouraged us on our parenting. They are truly an "iron sharpens iron" couple in our lives and helped us see areas we need to work on.

And as usual, one of them makes a comment that just stops me in my tracks and makes me think. As we were talking late one night, Jodi stated "God can never take you farther than the last place you told him no."

I reflect back on my life and realize I have told God "NO" a lot. No - I can't do that; No - I can't forgive that person; No - I won't talk to that person; No - I won't confess that sin; No - I don't want what YOU have provided.

And then I look at the life of Jonah and realize I'm such a Jonah at times - running away, hiding, and believing I can escape God's plan. I still have to learn that God wants my obedience, not my defiance; God wants my submission, not my selfishness; God wants the best for me, not what I want for me; God wants my YES, not my NO.

Can you imagine how you could turn the world upside down if you just stopped saying NO? Can you imagine where God could take you if we said YES?

(Sigh)

Yes, Lord . . . Yes!

8 Months Old Today

Titus Beck is 8 months old today. Any my little buddy celebrated by sleeping 5 hours last night without oxygen! Titus has gotten quite good about pulling his canula out of his nose. On Friday, he not only pulled it out of his nose, but also ripped off the band-aid-like adhesives that help hold it on his face. Last night, we went to check on him before heading to bed and his oxygen sats were at 100%. I then checked his face and sure enough, his canula was below his chin. We decided to wait awhile and test how long he would go since he was in a deep sleep. And, he went 5 hours. I checked him on through-out the night and his sats were still 100% - so this is great progress.

He continues to do better about sleeping through the night - no longer waking at 4-5am for playtime. And that means, we are all getting more sleep. What a blessing!

In the last few weeks, we've had several important things occur. Titus has been fitted for hearing aids and should be getting those in the next few weeks. This is just part of the therapy needed as we progress toward the cochlear implants. It may/may not make much of a difference in what he can actually hear, but it's part of the process.

We have been approved for Medically Dependent Children's Program (MDCP) in the state of Texas. But there are still several steps that have to be completed. Titus does have Medicaid coverage as of June 4, but to be finally approved for MDCP, he will need to spend the night at a state-approved nursing home. (Actually, he has to check in by 5pm and can check out at midnight). But for those things to happen, there is a whole lot more of paperwork to complete and fill out. We are working through that this week. MDCP will allocate funds toward at-home nursing care for Titus along with other benefits. And Medicaid will pay for therapy whereas my insurance only paid for 20 therapy visits (already exhausted).

As we look back over the last 8 months, we see how God has graciously provided for us and Titus. For example, we have 2 incredible women who have been donating breast milk for Titus. We are able to mix that with formula for our feeds. We believe that has helped him tremendously. In the last 8 months, we've only purchased formula twice since others have donated boxes/cans of the special formula he needs.

But moreover, we've been given the opportunity to be a witness. Numerous times, Becky has been at the doctor's office or out with Titus and people come up and ask "how do you do it". Everyone seems to be amazed that we can function with Titus needs, and keep up with 4 other boys, homeschool, teach parenting classes, and still have fun. The question comes from other parents, from medical professionals, from friends - and the answer is always the same. If we trust that God is sufficient and we trust in His plan, then who am I to challenge/question that? If God has stated he will supply all my needs, who am I to be demanding? If God has stated that Titus is "wonderfully and fearfully made", then who am I to say that he's not? If God has stated "fear not", then who am I to stand here afraid of the unknown?

That doesn't mean we haven't been sad, it doesn't mean we haven't shed numerous tears, it doesn't mean we haven't cried out to God, it doesn't mean that there are days we've been depressed. But it does mean that we have learned (and are still learning) to trust in God's plan and to continue to let our light shine in a dark world.

2 Corinthians 4 has always been one of my favorite chapters. And verse 16-18 states "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Please pray for these things:

• Paperwork for MDCP will be completed and accurate
• Nursing Home visit can be scheduled and completed soon
• Therapy appointments can be scheduled and re-started soon
• Titus breathing will continue to improve so we can get off oxygen
• Aidan and Noah have Fine Arts camp next week - both have speaking parts and are incredibly excited.
• Family vacation on August 28 - Sept 3 to Family Camp in Indianna

Praise for these items

• July is our month of birthdays - Tucker turned 4, Noah turned 10, and Paul turned "old". (Ok - Paul turned 47)
• Becky and Paul celebrate 14 years of marriage on the 16th
• Aidan and Noah (along with their cousin Nathan as sponsor) had a great time at Journey Camp last week.

We've stated before, but we want to repeat how incredibly blest and thankful we are for friends who continue to lift us up in prayer on a daily basis. We are so humbled.

Blessings,

Paul & Becky

It's Quiet - Very, Very Quiet

Aidan and Noah are at Journey Camp with the church this week and Tucker and Cade went camping with Meemaw and Peepaw. Let's just say - it's very, very quiet around here!!!! And to top it off, Titus slept all night last night - so Becky and I feel . . . well, we don't know how we feel. We're rested, but it's just plain weird without all our boys here and eerily quiet.

Our nephew, Nathan, is at camp as a sponsor with Aidan and Noah. He called yesterday to say everyone was having a great time. Their cabin won the clean award the first day and Aidan swept the entire cabin. We will definitely remember that he has that skill when he comes home. And Noah's team one the spirit award the first day. For some reason, I don't think it's nearly as quiet at camp as it is at home.

But, it's a good reminder that we all need to be quiet sometime. As Psalms says "Be still and know that I am God". It's odd how I can so easily get use to the noise of everyday. Between the hours of 7am and 8pm, it's rarely quiet in the house. Someone is talking, laughing, crying, teasing, whining, singing, etc. I find it easy to either tune in or tune out with the noise. But noise can fill such a void in our life that we block out other things that we need to do. And, you would think that I would appreciate a quiet drive into work, but those that know me, know that the radio is on full blast and I'm probably singing at the top of my lungs on the drive. But, it's good to be still, and it's good to be quiet. So for this week, I'm turning down the radio, turning off the tv, and enjoying the quiet. Because I know it's in the quiet that I can hear God's voice.

We pray you can find some quiet in your life this week to be still.

BTW, Titus was fitted for hearing aids today - he should have them in a few weeks. Just one more step that needs to be done as we prepare for cochlear implants.

Brotherly Love

"A friend loves at all times, and a brother is born for adversity." Proverbs 17:17


When Titus was born, we weren't sure how his older brothers would react to all of his special needs. They had prayed for so long for a brother and for this baby. Over the last 7 months, it seems like many times we have to sit down to explain to them a new special need that had arisen. And yet, each time, they have faced it all with incredible faith and optimism. Aidan has stated numerous times "it doesn't matter, he's my brother and I love him.

As I reflected on Proverbs 17:17, I realize I had always focused on the first phrase - "A friend loves at all times", but never focused on the second part of the verse "and a brother is born for adversity". Webster's defines adversity as "a state, condition, or instance of serious or continued difficulty". Titus is never a burden, but his condition is serious, and he faces a life of continued difficulty - but Titus has 4 brothers born to him that love him regardless. When I saw these pictures, the love of a brother shines through.

God's Plan

Several weeks ago, we met with the ENT to discuss the results of the MRI and the possiblity of cochlear implants for Titus. Our appointment was at 4pm, but it was 4:45pm before we were called back to see the doctor. Dr. Bauer began by reviewing the MRI and the make-up of Titus' ears. The normal human cochlea has 3 corkscrew turns - Titus right ear has 2 1/2 turns, his left ear has 1 1/2 turns. The inner ear is made up of 3 connecting horse shoe shaped bones - Titus inner ear is just a mass of bone - not in the correct shape. This may lead to major balance issues for Titus since the inner ear controls our balance. The doctor went on to say you need 3 things to be able to walk: sight, inner ear, and sensation on the bottom of your feet. Titus has sensation on the bottom of his feet, but his vision is limited (if any at all), and now combined with the inner ear issue, made us realize that walking for Titus will be much more of a struggle than we originally thought.

The doctor continued talking about the inner make-up of his ears, and the need to do more genetic testing to rule out other syndromes that might affect his thyroid. The more he talked about the structural issues with Titus' ears, the more our hearts began to sink. I had tried to mentally prepare myself for this, but when you are in the moment, it's all very surreal and numbing.

Becky finally just bluntly stated to the doctor "So, you are saying Titus is not a candidate for a cochlear implant?"

To which the doctor replied, "Oh no, his cochlear nerve runs directly into the brain - he's a perfect candidate for a cochlear implant!" And, at that point, all the air came back into the room as we let out a collective sigh of relief. The doctor apologized for giving us the wrong impression and went on to talk about the process. Once Titus has a cochlear implant, he will not be able to have ANY MRI's done - anywhere on his body. Therefore, we need to make sure any MRI's that need to be done are done before. Also, he would like for any other major surgeries that Titus needs done to be completed before he does the cochlear implants. We know he needs the cleft palate surgery, but he's still too young to determine if anything will need to be done for the hemi-vertebrae in his back. But, Dr. Bauer is willing to do the surgery once Titus turns 1. He does want us to have low expectations though. The surgery may only magnify static for Titus or may not restore complete hearing. He would rather have us going in with low expectations than expecting that this will cure all of Titus’ needs. We feel that we are very comfortable with the diagnosis and probably outcomes after surgery---, but it is still a matter of prayer. Selfishly, I want my child to hear the sound of his name, to hear the laughter of his brothers, to hear his mother singing to him, to know the joys of music and conversation. And, I want to hear him talk, converse, tell us how he feels, and be able to communicate with others, but I have to know and accept that just like his vision, God has a plan and a design for Titus and will reveal that to us in His own timing.

The next day, Becky received a call from our social worker to let us know that Titus has been approved for the Medically Dependent Children's Program (MDCP). Even though we haven't received our notification in the mail, she wanted to call and let us know. Becky and Titus will now go spend 24 hours at a state-appointed nursing home after which he will be "officially approved". This will approve him for Medicaid and also allot a certain dollar amount per year for the care of Titus. We do not know the amount yet, but the social worker stated it was significant. And, again, we were floored. After months of dealing with the paperwork, signatures, interviews, and unknowns of all the processes surrounding the approval, this is almost done.

As mentioned in the last email, Titus had caught a cold. During that time, we increased his breathing treatments and CPT (continuous percussive therapy). Even though he had a cold, his breathing improved and we have now turned his oxygen down from 1/4 liter to 1/8 liter. He's been on 1/8 for 4 days now and his Oxygen Saturation is high. We are starting to test him by turning it off altogether and see how he does. This morning I walked into his room to find that he had pushed the canula out of his nose and up on his forehead, and his oxygen saturations were still high. When I had checked him at 4:45am, it was in his nose, but at 7:15am, it was out - so there's no telling how long it had been there, but the fact that his saturations were almost 100 is excellent. He is getting there.

Titus continues to be the happiest, most content baby you have been around. He's not quite sleeping through the night, but when he wakes at night, he plays in his bed. We can hear him in there just a babbling and laughing. He is also full of smiles for his parents and brothers. Whether he smells us or senses us, when we draw near to him, he totally lights up. Noah can make him laugh by kissing him on the forehead, Aidan makes him grin with Eskimo kisses, Cade is always careful to make sure he's put his antiseptic hand-gel on before he comes near, Quita, will not leave his side during a feeding or if someone new is in the house, and Tucker - well, Tucker is almost 4 and sometimes drops toys on him, squeezes to tight, or gives him slobbery kisses and then other times is sweet and tender and "reads" books to him. For those who haven't met him, Tucker defines the term "live-wire" - not hyper, just full of life and all boy.

As I have been teaching Acts at church, I have tried to focus on the timeline of the early church. In Acts 9, you read about Saul's conversion and how gung-ho he was to spread the gospel and how uncertain everyone was around him. In Acts 9:30, you read "they took him down to Caesarea and sent him off to Tarsus " and you don't hear anything else about Paul until Acts 11:25 "Then Barnabas went to Tarsus to look for Saul". What you don't know unless you read the footnotes or commentaries is that Paul spent approx 10 years in Tarsus .

And I think, whoa - 10 years - that's a long time. Why would God save Saul knowing that he was going to be an incredible witness and evangelists for the Gospel and then put him in Tarsus for 10 years where we don't hear a thing about him? Why didn't God start using him them? What was God waiting for? And all I can come up with is, because God had a plan. I can only imagine what those 10 years were like for Saul. I can see him studying the scriptures with new eyes and understanding and seeing how the story of Jesus was there all along. But it took 10 years of preparation, 10 years of study, 10 years for people to forget about his reputation, 10 years of maturity, 10 very long years before God revealed his plan.

Becky and I have been talking about how God has been laying down his plan for Titus long before we knew he existed. For example, when we bought our house 18 months ago, it was the only house we considered that had a bedroom directly across the hall from the master bedroom. Every other house we looked at had the all the other bedrooms on the 2nd floor or on the opposite end. But God knew there was going to be a precious child that needed to be 2 steps away from his parents.

When we bought this house, we prayed for a neighborhood where neighbors would be friends, and where the boys would have friends to play with. We were the 2nd family to move on to the street. And as the street has been built and neighbors have moved in, we have been blessed with a great neighborhood. But not just neighbors - but people we can call on any time - night or day. We have one neighbor who is a NICU nurse, another neighbor who is a nurse at the Children's hospital, another neighbor who has worked in Early Childhood Intervention for years, neighbors who have cleaned our house and walked our dog, and families who have kids the age of ours who play happily in the street. God knew and planned these relationships long before those houses were ever built.

And when we look to the future, we have learned to "be still and know that He IS God", knowing that we have no idea what God's plan is. But we do know, no matter how long it takes, God has a plan for us, for our family, and for Titus.

Please pray for these things:

• Titus and the bottle! - we have been so busy working on Titus breathing and strengthening his neck muscles, that we have not been working on oral stimulation (sucking on a bottle). When Titus first came home, he would suck on a pacifier, but that has stopped. We are currently giving him a little milk (about a teaspoon) through a bottle to get him interested in oral feeds. He's showing some interest, but this will take work and time. The doctors/therapists have encouraged us to try different tastes on his tongue to see what he likes (he really liked the watermelon slurpee last Saturday). Please pray for Titus’ sucking ability.


• Titus schedule - we have adjusted his schedule to feeds every 4.5 hours with the last feed at 7pm (no more late night feeds - YEAH!). Titus is taking good naps during the day, but we are really working on his nighttime sleep. As mentioned above, he wakes up happy and playing, but the playing sets his monitors off, which cause us to get up and check on him.


• Titus breathing - as mentioned above, he's showing improvement and we are weaning him off oxygen, but it will be nice to have him oxygen altogether. We have a family vacation coming up on Labor Day, and I really don't want to haul oxygen tanks across the country!


• Titus neck/trunk muscles - Titus is showing improvement in holding up his head, but only for a few seconds. We are working on this diligently. Again, it takes time in the day to exercise and it wears him out. But he has incredible dexterity with his fingers and is starting to grab his toes.


• Upcoming surgeries - as mentioned above, the cochlear implants can be done after he is a year old, but nothing has been scheduled at this time. We also have to schedule his cleft palate surgery.

And last thing - and that's a request for you. We are creating a prayer tree for Titus. We would love to attach pictures or scriptures of those people who are praying for him. If you get our updates and are praying for Titus, can you send us a picture of you or your family or the scriptures that you are praying for them. We will print them off and attach them to his Prayer tree in his room. You can email those to pgdaily@yahoo.com.

So You Wanna Go Back to Egypt

It's been several weeks since I sent the last update and we have several upcoming events that we would appreciate your prayers on. This one is a little long, so you may want to grab a diet coke/cup of coffee and sit down for awhile.

Next week will be a milestone week for Titus. He will turn 6 months old on Wednesday and next week will also mark the timeframe when he has spent more time at home than he has in the hospital. It is such a joy to have him home and integrate him into the Daily lifestyle. Titus is quite the trooper. He goes to church with us on Sundays and Wednesdays, goes on walks around the block with the boys (and Quita), goes out to eat with all of us, and has even made a few trips to the store. We always carry an extra oxygen tank around with us if he gets low, but having him on oxygen does not keep him tied down to the house. And, Titus got his first haircut last Saturday - we just had to trim up his curly hair a bit since he had developed quite a mohawk after it fell out on the sides (but stayed very long on the top). But check out the pics I've attached.

On Sunday, May 11, (Mother's Day), Titus will participate in Baby Dedication at our church. We will be so honored to stand there and dedicate our precious son, but also to pledge our continued support to raising him in a Christian family. Honestly, this baby dedication will be so different than the others we had participated in for Aidan, Noah, Tucker, and Cade since we know the life that Titus will lead is going to be drastically different from the other children standing up there with us. There are days we struggle when we see another 5 month old child who is able to hold up his head, turn to his father's voice and react in the way a child does that does not have the physical or developmental delays. But we know that Titus has been "fearfully and wonderfully made" and our love for him grows deeper every day.

On Monday, May 12, Titus will have a MRI / CT Scan done at Medical City. The MRI / CT Scan is being done for 2 doctors assessments. The ENT will be assessing Titus' ears so he can better determine if cochlear implants will be a "fit" for Titus. Secondly, the neurosurgeon will be checking the Dandy-Walker Variant (cyst at the base of brain). We had an appointment with the neurosurgeon several weeks ago, and she was encouraged at the growth and development of Titus head - it is growing upon the normal growth curve. Too little growth might indicate the brain is not growing, and too much growth might indicate a fluid buildup, but at this time there are no concerns and his head growth/circumference was right on track.

On Monday, May 19, Titus will be back in Houston at Dr. Feldman's for a checkup and day surgery on his eyes. It's still too early to determine the damage done to his eyes from the congential glaucoma. The optic nerve in his left eye was not fully developed, so there's not a lot of hope that there will be vision in his left eye. His right eye does not have as much damage, but does have some. We do feel there are times when Titus is concentrating and looking at something, but again, it's still too early to tell. Our prayer is that the pressure in his eyeballs are normal and that the 2 previous surgeries are providing the necessary drainage needed in the eye.

Becky and I would both admit that the last month has been very hard. Although Titus has consistently been home most of that time, the weariness of getting a full night's sleep is starting to wear us down. We have dropped our middle of night feeds, but Titus's oxygen monitor goes off numerous times during the night if he wakes up and starts kicking his foot (where the monitor is attached). Or, Titus will get his fingers around the canula and pull it out of his nose, and then his oxygen levels will sink and the monitors will go off. We have gotten his routine down - he tends to wake around 3-4am and stay awake for about 30-45 minutes. And, I truly believe the weariness leads us into emotional vulnerabilty. Satan loves to take a weak moment and turn it into an emotional breakdown.As I was having one of those emotional breakdowns in the car last week, I was led to this thought - "Do I want to go back to Egypt?" Now stay with me as I try to clearly explain it.

I thoroughly enjoy the Old Testament. But, I've never fully understood what was up with the Israelites after being freed from slavery in Egypt. Since I had the advantage of reading the entire story and knowing the outcome, I have tended to think "What a selfish, stupid group of people - You've seen some of the most incredible miracles from God and you stand there grumbling about the tiniest details". They had the very presence of God in their midst (pillar of fire by night, pillar of cloud by day), they had their immediate needs met, fresh food and water every day, and their clothes/sandals didn't even wear out. But even with all that, they wanted to go back to Egypt, to slavery, to what was familiar, routine, comfortable (as comfortable as slavery could be). And why? - because it was so predictable and they knew what to expect - they had 400 years of experience of knowing what type of life to expect. Wandering around in the desert for what should have been just a few weeks was definitely not in their comfort zone.

And, as I reflected on that, I realized how selfish that is - to want things always comfortable, to want routine, to want predictability, to not have to wander, to rely on daily provision and not my own doings. I've never considered myself an overtly selfish person (I'm sure there are people who would disagree - but they aren't getting this email), but I have come to realize my selfish thoughts of wishing things were normal, wanting to go back to my life 6 months ago, wanting a sense of normalcy is really just a selfish pursuit of wanting what I want when I want it and not relying on God plan. I've come to realize that the opposite of faith is not disbelief, but selfishness - believing in what I can see and want and possess instead of "being sure of what we hope for and certain of what we do not see (Hebrews 11:1)".

And, for the first time, I've come to understand the Israelites perspective. I can see how they were tired and weary and wanted to go back to what was familiar to them, even though it wasn't God's best - their selfish side told them it was at least routine and predictable and better than doing what they were doing. Even the memories of witnessing the incredible miracles of God tended to fade and pale in their weariness of wandering. And, just like in our own life, the highs/spiritual mountaintops of our past are just that - my past, not my daily bread. I can' t live a life based on what God did for me yesterday, I have to live my life based on what God is doing for me TODAY.

And, I now have a choice to make - do I grumble and complain because of events I cannot change, or do I claim the promises set before me that the "righteous are never forsaken (Psa 37:25)", that God "has a plan for me (Jer 29:11)", and that I have to "trust in the Lord with ALL my heart and lean not on my own understanding (Prov 3:5)". Please don't misread my intent - Titus is a blessing in our life, but the road is long, tough, and hard. And when I am tired, and the bills seem large, and the treatments seem uncertain and I don't see the progress in therapy that I would like to see, it's just plain hard to remember to choose to live for today. But I don't want to go back to Egypt - I want to lead my family to the promised land. And no where does it say that the road to the promised land is comfy, cushy, smooth, air-conditioned, and bug-free. (And, yes, for those of you raised in th 70's, I've been singing Keith Green's "So You Wanna Go Back to Egypt" - and I'm sure the rest of you are saying "who is Keith Green?")

Please pray for these items:

• Titus oxygen levels - we are testing him at lower levels of oxygen, but as soon as he gets off oxygen, the sooner he gets off the monitors. As soon as he gets off monitors, the better we will all be sleeping. Please pray his lungs will continue to strengthen and develop.
  MRI/CT Scan on May 19 will provide the doctors the information they need to make a plan for Titus


• Medicaid - we have filled out more forms, had more interviews and should be hearing soon that Titus will be approved. As soon as he is approved for Medicaid, his therapy sessions can resume.


• Strength for Titus neck - he has incredible dexterity with his hands and fingers, but we are really working with him to hold his head up.


• Rest for Paul and Becky


• Ministry Opportunity - We will be facilitiating a Growing Kids God's Way class starting in June. We've always started a class in the summertime and have had so many express an interest that we realize our parenting ministry and lives go on. Please pray that God will bring the right families into this class.
  

Praise Update

• Transforming Your World Update - as I mentioned in one of our emails, our church "left the building" a few Sundays ago and went out into the community to serve on Sunday morning. We had 7 couples and their kids go with us down to Medical City Dallas to provide food and encouragement to the families/staff in the PICU and NICU. We had such an incredible time sharing with families, praying with them, and the kids made crafts for the kids in the hospital (or invited the kids who were up there with their families to make crafts with them). Thank you so much for your prayers for that day. There are so many incredible testimonies throughout the entire church of things that happened on that day.

My Arms Are Too Short To Box With God

Titus had eye surgery in Houston this morning. After sedating him, they tested the pressure on his eyes, and the levels were high. The doctor immediately went into surgery from that point. Last month, when they did surgery for the glaucoma, they put a channel on the top of his eye. With today's surgery, he installed the channel on the bottom of his eyes and installed a silicon plate at the base which will allow for future testing/relieving pressure.

Dr. Feldman noticed significant nerve damage in his left eye and does not give much hope that Titus will have much vision out of the eye. There is damage in his right eye also, but not as much. As for now, it's really too early to know the extent or depth of damage to his eyes, but we have been somewhat preparing ourselves for this message. We can tell that Titus responds to light, but he does not track objects with his eyes and his pupils don't seem to dilate.

I'll be honest - it's a bit devasting to know your child can't hear, and now to learn there's a very strong possibility that he can't see. But I know that none of this takes God by surprise. As Becky was speaking at her Mom's Group this past week, she shared how God specifically chose her to be Titus' mom knowing all the special needs that he would have. And raising a child with special needs takes time, it takes effort, and frankly it's tiring. But it's the path God has chosen for us and for Titus. And, as my title states, my arms are too short to box with God.

It's all about acceptance and submission. I've been teaching the book of Acts on Sunday morning - and a few weeks ago, as our class was discussing the conversion of Saul, I brought up the point that the Bible always tells us to accept Jesus as Lord. It does not state to accept Him as saviour. See the difference is, if Jesus is the Lord of my life, then He is my master, He is in control, He knows and shapes my life, and I must be submissive to him. Accepting Jesus as Lord puts me under his submission and control. But in our world today, we just want to accept Him as Saviour. But what does that mean - that we are saved from Hell. Jesus certainly does that, but if Jesus is just my Saviour (providing my life insurance) but never my Lord, then I'm going about my way, living my life for myself relying on His Saving Grace, but never submitting to His Lordship. Jesus has to be My Lord AND My Saviour. But, in Paul's numerous letters, he never states to confess Jesus as Saviour, but Jesus as Lord. It's why Paul wrote in Phillippians "every knee shall bow, and every tongue shall confess that Jesus Christ is Lord, to the glory of God the Father..." (Phil 2:10-11).

So, I claim Matthew 11:28-29 today "Come unto me, all you who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am meek and lowly in heart, and you will find rest for your souls..." I am tired, I am weary, but I submit to the yoke and am learning to find rest in Jesus, my Lord.

Please pray specifically for these matters:

• Healing and recovery for Titus - the doctor expects to release him to go home tomorrow (Tuesday, April 15)
• Rest for Becky and her mom who are at the hospital with Titus & safety while driving home from Houston
• Titus is still on oxygen - the pulmonologist is concerned that he's not been showing much improvement. He sent us to the cardiologist last week who did rule out any heart issues. And, I might add, how awesome is God who works out the fine details allowing us to get into a pediatriac cardiologist with less than a days notice - that just does NOT happen with these types of specialists! Please pray for continued strengthening and healing in Titus lungs so that we can wean him off of oxygen.
• Titus vision - we may not know the extent of the damage for months, but we are praying that Titus will have vision in his right eye.
• Ministry opportunities - as a family, our lives are being opened up to a whole new team of therapists and specialists. We have ECI in our home several times a week assisting with therapy, along with numerous weekly doctor's appointments. Each person we come in contact with is an opportunity to minister to them and show them God's love - even as a family. Most are amazed when they walk in, see 2 boys working on home school, see 2 3-yr olds doing blanket time, and the only thing Becky is having to restrain is the dog (who can be a little overprotective at times). With all that is going on, we still have a peaceful household (ok - it can get a little loud with 5 boys - but it is a joyful noise!)
• Medicaid - we have Medicaid coverage from Dec 1, 2007 through Feb. 29, 2008. But this doesn't cover the first 2 weeks Titus was born and in the hospital. We have applied for retroactive coverage - this is mainly for assistance on one bill, but the bill is $1500 and we would love to have some Medicaid coverage on it. At the same time, we are in the midst of filling out other applications for continued coverage. Dealing with all the forms and phone calls can be a full-time job (I spent 45 minutes today being sent to 4 different phone numbers and people before I finallly found someone who could answer my question). There are times I think it would be easier to hang up and just pay the bills, but then I get the bills and decide that I can sit on hold for another 45 minutes.
• Tranforming Your World - our church has an awesome ministry opportunity on Sunday, April 27. The church is leaving the building and getting out in the community (ain't that an awesome idea!). Our class is going to take food to the NICU and PICU at Medical City Dallas and pray with families in the waiting room. The director of the class I teach (Scott & Jill Dillashaw) have spent as much time at Medical City with their children as we have with Titus - and we thought it would be an awesome opportunity to give back to other families who are going through what we have been through. Please pray that God will use that morning to minister to families who are going through some hard times with their children. While we are spending time with the parents, our kids are going to be making cards for the kids in the hospital.

One last thought - so many of you come up (or write or call) and let us know that your children continue to pray for Titus everyday. Please tell your children how thankful we are for them and that God hears their prayers and He is answering them in a mighty way. I know some kids may think when they hear about today's report that God may not be hearing their prayers - but assure them that He is. We serve a Mighty God who is in Control!

A Father's Love

Titus had surgery this yesterday morning and he is being released this morning to come home. Praise the Lord! They had told us it would only be one night in the hospital, but generally with Titus, an overnight procedure turns into a week-long stay. We are thrilled beyond words that he can come home today. He is doing fantastic and had a good night last night.

The doctors performed several procedures on him yesterday. Dr. Peters, the ENT, cleaned out his ears, drained all the fluid, put in tubes, and then the did the ABR to test his hearing. The results from the ABR were consistent with the test results back in December - he has profound hearing loss in both ears.

Dr. Genecov, the cranio-facial surgeon, then removed the jaw distraction devices (and of course, we asked to keep them!). He was pleased with his jaw and bone growth. There was a little bit of infection that had set in on one side of his jaw, so he cleaned that up. But Dr. Genecov mentioned that his lungs were still a bit stiff - and stated the RSV really did a number on his lungs - so we will be keeping him on oxygen when we come home.

It was a bit surreal to walk back into the PICU after spending 33 days here in Jan/Feb. But, it was also comforting to know most of the nurses, respiratory therapists, physician assistants, and doctors. They have all been stopping by to check on Titus - and all comment on how much he's grown and how good he looks. We are so thankful for the caring medical staff here at Medical City and their passion/concern for Titus.

When Becky and I were married, Becky states she learned about a love of choice - and everyday she made the choice to love me. I'm thankful that she does - and that God has done the same. God's mercies are new every morning, and He continues to love me each day.

When Aidan, our oldest, we born 11 years ago, I learned Father's love - a love that was so overpowering for such a tiny, helpless infant. And as he has grown, I've learned how that father's love means that I discipline and train my son so that he will grow into the man that he is suppose to be. And, the same goes with God, He disciplines the son that He loves.

When we adopted Tucker and Cade, I learned the love of an adoptive father - to love a child not of my blood, but of my heart; to love a child that didn't immediately love me back; to love a child that was chosen to be part of my family. And, as I stood in front of the judge the day we finalized their adoption, and the judge asked me "will you love this child forever - because what you are doing is irrevocable", I realized that yes, I will love this child forever - and the same goes with God's love. His love for me is irrevocable and He promises to love me forever.

And now, with Titus, a child born with so many defects, I've learned a love that overlooks the faults and loves the child. When we were in the NICU back in January, one of the nurses described the babies as "broken babies". I didn't care for the term much at first, but since have come to embrace it. Because I've learned that we are all broken. We all have faults, we all have issues, we all have handicaps that need constant care, attention, and sometimes intensive surgery and therapy. My love for Titus over looks the defects, the brokenness, the handicaps. I see my son, my little treasure in a jar of clay - so fragile, and yet so beautiful. And, I realize that God sees me the same way - His love for me overlooks my faults and He provides healing in only the way that He can.

As it says in 2 Cor. 4 "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. . . Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Please pray for these things this week.

• Continued recovery from surgery, especially his breathing so that we can wean him off of oxygen
• Continued strength and growth before his next surgery on April 14
• Peace and Calm for Aidan, Noah, Tucker, and Cade as they stay with friends and family while Titus is recouping
• Rest for Paul & Becky

The Reality of Routine

Titus has been home from for 2 weeks now after his Glaucoma Surgery. He is doing good - and his eyes are clear and not swollen. It's still too early for them to test his vision and see if there is any permanent damage to his eyes. He is still on oxygen (at very low settings), and begins to struggle after an hour if we turn it down or off. The pulmonologist believes a small portion of his lung may have collapsed after the last surgery and it's just taking awhile to get back. We are becoming quite adept at carrying him around the house with this oxygen hose trailing behind and taking him to the doctor/church with portable tanks.

It is wonderful having him home, but also tiring. In the course of the day, Titus is fed every 3 hours (10-30 minutes), he has a nebullizer treatment 4 times today (15 minutes) followed by CPT (15 minutes - continuous percussive therapy - where we pound his back with this suction cup thing), another breathing treatment twice a day, eye drops 4 times a day, cleaning his jaw pins/g-tube 4 times a day, and general therapy on motion/movement throughout the day. We have reduced his feedings at night from 2 feedings to one - which is a huge blessing to only have one of us get up once a night. Becky slept all night last night for the first time in weeks. Since Titus is on oxygen, he is also on a pulseoximeter - which monitors his heart rate and oxygen saturation levels. But, if Titus is kicking his foot (where the monitor is attached) or squirming, the meter doesn't read, and the alarms go off. Imagine this happening about 20-30 times a day - generally at night! The doctor also suspects that Titus may have allergies which is causing the excess congestion. We have a suction machine to help with that several times a day if we feel it is affecting his breathing. The doctor is allowing us to give a very small dose of Benadryl to help with congestion. On top of the daily routine, Titus generally has 2-3 doctor's appointments during the week, which also means the schedule needs to be adjusted to fit within the time frame and drive to the doctor.

And, along the way, there are 2 other boys that need to be home schooled and 2 3-year olds that need structure and routine (and long naps in the afternoon). The reality of the routine can be overwhelming - and on certain days it is. The regimen that we follow cannot be deviated from and it's become an incredible lesson in discipline and obedience. Becky and I were discussing that it's easy to follow a routine if you know where it's headed, but it's difficult to consistently day-after-day follow the same routine and not know what the end result will be or see immediate results. We have to remind ourselves that everything is baby steps with Titus. And we received sage advice to celebrate those baby steps - he is not going to hit the same developmental milestones in the same time frames as other babies his age. Others have told us that the first year of child with special needs is the hardest. And, we can see how that can be true.

As I was contemplating our routine, I thought about Noah. It took Noah 120 years to build the ark - and he had no idea what the end result was really going to be. And yet, the Bible does not tell us much about that 120 year span. But for 120 years, Noah cut down trees, made lumber, prepared a foundation, built a boat, created barrels and barrels of pitch to coat the ark with . . . He did all the tiny tasks - day in and day out - to complete the plan exactly as God told him too. Along the way, he had 3 sons, raised those boys, watched them get married, maintained his marriage and livelihood and relationship with God, and still built the ark. I wonder - did Noah get tired of cutting down trees and picking out the splinters from his hands? Did he ever question why he was doing it? Did he ever get rid of the smell of pitch/tar? Did he ever take a day off? Did he ever question God's plan? It will be interested one day in Heaven to sit down with Noah and ask him those questions. But what I do know is what the Bible tells me "Noah did everything just as God commanded him." Noah must have been faithful with all the little tasks given him to be provided with such a large task. So, we carry on with the little tasks. They may be tiring and we may not know the results for weeks/months or even years to come, but I am reminded - Noah never stopped building that ark until it was complete.

The next few weeks will be busy with upcoming tests and surgeries. We wanted to let you know how to pray specifically for these things and also let you know how God is answering your prayers.

Please pray specifically for these items:

• Titus will have a swallow test done today. The doctors did an initial swallow test very early on and this is an update to see if he will aspirate (water/food/saliva) into his lungs versus down his esophagus into his stomach. If this is successful, they will start more therapy to introduce him to swallowing liquids. This is just one step to getting him off the feeding tube. Titus does great with a pacifier and he's very close to sucking his thumb (he gets those hands up to his mouth).
• Titus will have his follow-up jaw distraction surgery on April 2 at Medical City Dallas. This surgery will be to remove the devices put into his jaw that stretched it out. Specifically we pray he remains healthy prior to the surgery, that the bone that has been formed through the stretching will continue to harden, and for no complications after surgery from infection. Also, due to his breathing issues, we are praying that another round of anesthesia does not set him back. Dr. Genecov and his incredible staff at the International Cranio-Facial institute will be doing the surgery.
• When he goes in on April 2, we are also coordinating with Dr. Peters, the audiologist for a 2nd ABR test. When they did the initial test, Titus was not sedated, but for this test, they need him fully sedated. We have asked if they could coordinate this with his other surgery to only anesthetize him once instead of twice. Dr. Peters will be putting together the plan for his hearing (hearing aids to stimulate the ears - cochlear implants in the future), but we have had to delay these appointments due to the RSV and glaucoma surgery.
• Titus has a one-month follow-up/surgery in Houston with Dr. Feldman for his glaucoma on April 14. We will drive down to Houston for the weekend, have the appointment on Monday with surgery that afternoon. Again, we are praying for quick recovery for his eyes and his breathing.

We also want you to offer up praise and thanksgiving for the following answered prayers:

• Titus has Medicaid coverage up to Feb. 29, 2008. This should cover the remainder of bills we are responsible for after our primary insurance has paid. Since we have already met the yearly out-of-pocket max, we aren't too concerned about the remainder of the year since insurance will cover, but having Medicaid coverage for the initial 54 days in NICU and the 33 days with RSV will help tremendously. We are still working on full-time Medicaid coverage and SSI benefits, but for now, this is a step in the right direction.
• We have a new Suburban to carry everyone in. I had mentioned that we were looking for a vehicle that would allow for all of us to be in the car together. God provided in an incredible way allowing for us to purchase a car at auction through a dealer. So, we are the proud owners of a new (used) 2008 Tank (ok - it's a Chevy Suburban). The boys and I spent last Saturday re-organizing the garage so that we could park it there (with just 2 inches to spare). And last of all, please say a prayer of thanksgiving for my incredible wife who has a birthday on Friday, March 28. My life would not be complete without her and I treasure the day she was born (and the fact that she's SO much younger than me - she keeps me going).

Speedy Recovery

As mentioned yesterday, Becky and Titus flew to Houston yesterday afternoon. Dr. Feldman immediately saw them upon arrival, checked Titus into the hospital within the next hour and surgery commenced immediately. Titus was out of surgery at 11:00pm.

I just got off the phone with Becky after Dr. Feldman stopped by to review his progress. He is extremely pleased with how the surgery went and how Titus is responding. His eyes look good and they will follow-up with another visit next week.

Titus was pretty dehydrated by the time they got him to surgery last night, so they pumped him full of fluids in addition to the anesthesia. Going into surgery, Titus has had some drainage from a cold although it has not gone into his lungs/chest. But, he is full of fluids and that's hampering his breathing a bit. He continues to improve each hour and as I remind Becky, it's not even been 24 hours since he had a 3 hour surgery. So, as soon as they feel comfortable with his breathing, they will release him from the hospital, which we suspect will be tomorow. Becky and Titus will travel back to Houston next week for a follow-up.

Our sweet friend, Anne Marie sent us this verse this morning - and how appropriate it is.
Isaiah 58:8-9
Then your light will break forth like the dawn, and your recovery will speedily spring forth; then your righteousness will go before you, and the glory of the LORD will be your rear guard.
Then you will call, and the LORD will answer; you will cry for help, and he will say: Here am I.

It is absolutely amazing to think that Becky received a call at 10am yesterday saying a doctor in Houston could see us if we could get there that afternoon, and less than 12 hours later, not only had the doctor seen us, but he had Titus in surgery - talk about "speedily springing forth recovery". God knew and had the perfect surgeon picked out for Titus - one that was willing to start a 3 hour surgery at 8pm. This surgeon is also leaving town on Thursday to go to a conference, and is seeing 55 patients today, and yet he found time for Titus.

I thank God that He works in the details.
I thank God that He is in the business of speedy recovery.
I thank God that He has my back (he's my rear guard).
I thank God that He answers when I cry out for help.
I thank God for friends who love us, encourage us, and lift us up in prayer.
I thank God for a surgeon, Dr. Feldman, who was willing to work way into the night to help my son - I am so humbled by his commitment.

Pleas pray for the following:

• Continued healing and strength for Titus - especially his breathing
• Rest for Becky and her mom - they need some sleep before they attempt to drive home from Houston
• Comfort and peace for the boys: Aidan and Noah are in Houston with Becky (staying at the K's), Tucker and Cade are in town (staying with the D's - and being spoiled rotten I'm sure).