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".

Through the Cracks

If you live in Dallas you have probably been shocked and saddened about the little boy dubbed Wylie's Angel. For those of you outside of the area, let me tell about this horific story.

Several weeks ago, workers hired to mow a city park near Lake Lavon in Wylie, TX, found the body of a 6-yr old little boy. There were no signs of trauma, no identification, no missing child reports - no evidence to point to what happened.

The police released a composite drawing of the child to the press along with the news that the child had been g-tube fed. A few days later, they released information stating the child was deaf-blind. My heart broke when I initially heard the news, but as details were released showing the little boy had special needs the same as Titus, I became more and more emotionally involved in the story.

As the weeks have progressed, the little boy was identified and his grandmother has been arrested and charged with his death.

The details around his short life are heart-breaking. At one month of age, he began to experience seizures. He was diagnosed with Well's syndrome, diagnosed deaf-blind, was fed through a g-tube, and had no control of his arms/legs.

His parents divorced when he was quite young - and there have not been a lot of details. His father is in the military and although he had not seen his child in 2 years, he regularly paid his child-support.

At one point, the child had been admitted to a care facility for full-time care, but for reasons unknown, the mother checked the child out of the facility, and then left the child with his grandmother. The mother now lives in Oklahoma and the grandparents were living in an extended stay hotel in a suburb here in Dallas.

And those are the only facts that have been released.

As I have read these stories, I question "why?" Why did this happen? Why didn't this child and her parents/grandparents get the assistance/help he needed? How did this child fall through all the cracks in the system especially after he had been diagnosed and checked into a facility?

But deep down, I know some of the answers to my questions. And if I can convey anything to those of you who read this, I want to let you know this.

Life with a child with special needs is hard. There is no way you can ever know what a family goes through until you live through it yourself. It's emotionally draining, physically exhausting, and tough. Statistics show that a majority of marriages that have a child with special needs ends in divorce. And that just makes life all the more difficult for the parent who remains as the primary care-giver.

And to add to all the difficulties of care you provide, you have to navigate an incredibly difficult web of state and government services and insurance to get the assistance your child needs. It's not a one-call-takes-care-of-all type of situation. Some agencies are easier to work with (major shout-out to HIPP - Texas Health Insurance Premium Program) while others require HOURS on the phone EVERY WEEK providing the same repetitive information over and over. In the beginning, Becky and I spent hours on the phone being transferred from one office to another, from one social worker to another, waiting on hold for answers to our questions. And since you have to call during working hours, time spent on the phone takes away time at work or time you should be caring for your child.

There are still services we are finding out about. And there is a lot of misinformation about Medicaid and other state programs. The waiting list for most programs are YEARS - and while you are waiting, you are still responsible for care and costs. Even toys that are designed for your child are so expensive that most people can only afford to buy one a year.

And even once you are approved, you are still tending to the daily needs of your child and your family but also have to learn to bond/meld with a nurse/aide that may be assigned to your family.

At least, that's what we do. We have stated, we never want Titus to be a "houseplant" sat in the corner and ignored. We work with him, our nurses/aide works with him, his brothers play with him. And Titus responds.

But we know we aren't like other families. Some families can't afford the time on the phone to get to the right people to talk to. Some people are confused by the questions on the forms you have to complete (i.e. "how many chickens/livestock do you own?" - I kid you not - that is one of the questions). Some people don't want to ask for help. Some people are ashamed/embarrased by their child. Some people are depressed and tired from dealing with their child and can't handle anything more. Some people don't have a support system. Some people feel like they have no other options. Some people don't like to ask for help.

And some people abandon their child to die in a park.

I accept that we live in a broken, fallen world. But I also believe every life, every heartbeat is crafted by God and has a purpose. And this little boy needs to serve as catalyst for change that we (and I do mean all of us) need to open our eyes and make a difference to a family that needs help.

You may think there is nothing you can do, your effort would be too small, and you don't know how to help. Or maybe you feel uncomfortable (get over it - it's not about you), but let me tell you a few things anyone can do.

• If you see a family with a child with special needs - offer them a smile. Speak to the child even if you don't get a response. Never ignore the child or look away.
• Take the time to get to know them.
• Ask if you help (they may say no way - but keep asking). Ask questions like "how could I help you out on Tuesday mornings? (make it a specific time when you are available not just something general). Be willing to do their laundry, mow their lawn, clean their kitchen, run an errand, read their child a book, etc.
• Ask them if they can show you how to help care for their child so that they could have a few hours away or a date with their spouse.
• Give them a hug.
• Write them a note. Tell them you admire them for their dedication to their child. (Quick note to the unknown prayer warriors at The Heights Church in Richardson - you will never know how much your little notes to us every week mean to us - we have never met you personally, but the 2-3 notes we get every week lift us up).
• Find a special needs financial planner in the area and take the family to them - even pay for the consultation. We would never know some of the things we do if it had not been for TJ Kroehle and Mike DeGucci.
• Take them a meal or better yet, have them over to your house for a meal.
• Ask your church to have a special needs ministry or host a night-out for parents of special needs kids
• Realize that birthdays for their child can be hard - the day of their birth generally doesn't bring back happy memories. But recognize the child on their birthday - they probably won't have the special type of parties/celebrations that you would plan for your children for numerous reasons. And gifts/toys for the child are hard to buy. But once you know what type of stimuli the child needs in a toy - be on the look out for toys like that. Ironically, some of the best toys for Titus we have found at the pet store.
• Realize that child probably does not have friends his own age; doesn't get invited to parties; doesn't play t-ball, soccer; doesn't always have "cute" clothes or bows in their hair; doesn't have portraits taken. So make it a point to do those things - include the child - teach your own children to be comfortable and kind to a child with needs (not to point or ignore).
• If your child asks a blunt question such as "What's wrong with them?" - it's ok. For us as parents, it's a time to educate the child and show your child how to interact with my child. Don't turn your child around or apologize. Trust me - we are use to it - and we have learned how to answer the question. But also know that some parents have a hard time with that, so be willing to step in and state "I'm sorry - we are working on my child's blunt approach - but tell me about your son/daughter?"
• Volunteer at CASA - Court Appointed Special Advocates
• Get to know a social worker - they are underpaid, overworked, but can be a wealth of information.
• And last of all, pray. Pray for the child, pray for the family, pray for the marriage, pray that others will see this child as a blessing not a burden.

My prayers still go out to Wylie's Angel and his family. My comfort is in knowing that this child is now the arms of God and perfectly healed, but there is still a lot of healing/comfort that needs to happen hear on earth for this broken family.

Smiles

Loves these pictures of Titus with his sweet smile.

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.

Don't Mess With Titus!

With 5 boys, we have a complete arsenal of weapons: cap guns, toy guns, airsoft guns, bb guns, bows & arrows, swords of all shapes and sizes. So, it was the natural turn of events that Titus would eventually join in the fray. The look on his face says it all . . . "Don't mess with Titus".

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.

Tucker's Homecoming Day

Five years ago today, we brought Tucker home from Seoul, Korea. The memories of that day still resonant in my mind.

When we flew to Korea, we met Tucker the first full day we were there. We sat nervously in the reception room waiting for our appointment to meet with him and his foster mom. When they walked in, his foster mom did not notice us sitting there, but we immediately knew that the baby she was holding was our son. We had looked at his pictures for 6 1/2 months and had watched the videos that had been sent to us, so we recognized him immediately. During that first meeting, we just wanted to hold him and smother him with kisses. He, of course, wanted his foster mom since he had now clue who these two crazy white people were.

Several days later, a taxi took us to his foster parents home and we got to see the place where he lived his first 8 months of life. We met his foster dad, we gave gifts, we communicated through an interpreter as best we could, but our eyes were fixated on this little bundle of energy. The visit with his foster parents told us one thing - this little boy was deeply loved. This couple had been foster parents for 20+ years, but they had never had one child as long as they had had Tucker. They were deeply attached to him. The adoption agency had informed us that we would take possession of Tucker that night since we were leaving early the next morning for Dallas.

A few hours later, it was raining sofly outside. Another family was also recieving their son that night. We were all waiting in the lobby at the adoption agency with the social worker and the director. The other little boy had arrived - Hank. He was 18 months old and was a non-stop talker and walker. It seemed like we waited for hours, but in reality it was probably 15 minutes before Tucker and his foster mom arrived. She was quite flustered that she was late and was very apologetic.

She held Tucker so tightly as she started to cry. She placed him in our arms as the director prayed a blessing. She stood there and started to sob and Becky put her arms around her. And the three of us stood there holding each other as I held Tucker. She continued to kiss him and touch him.

And my heart started to break. This precious woman who had given countless hours to care for this little boy was selflessly handing him over. And I kept thinking of his birth mom, who had done the same thing in this same building 8 months before - handing over her son selflessly.

Our social worker stepped up, put her arms between us and the foster mom, and gently said "It's time for you to go". We repeated "thank you, thank you, thank you" through our tears as we stepped to the elevator that would take us to our room. The foster mom followed us, holding her hand out to Tucker and sobbing, The social worker stood behind her, holding her.

And the elevator doors closed.

It was the slowest elevator ride up those 5 flights. We walked off the elevator and to our room. It was the first time we had been alone with Tucker. He looked at us, and the bottom lip began to quiver. And then he began to cry, then sob, and then wail. Our agency had told us that children, even babies would grieve their loss and that this could happen, but Becky and I thought "surely not our child".

Tucker cried for 2 hours - non-stop. We went down to the family room on the 4th floor to visit with the other families staying at the adoption agency who were waiting to receive their children. Hank, the other boy who received his new family that night, was running around in circles, playing, laughing, and have a great time. His new mom was trailing behind him. The other families looked at Hank and smiled. Then they looked at us and would stop smiling. They kept repeating "it will be ok" over and over. Looking back now, I think they were talking to themselves instead of us. We could see the apprehension that was building up in their eyes thinking "what will my child do when he's placed in our arms?"

Tucker finally quieted down and went to sleep. We pushed our two twin beds together and had Tucker sleep between us. The next morning, he was quiet. It took a lot of coaxing to get a smile or laugh. Once we got on the plane, he preferred the flight attendants over us, but we made it home with just a few breakdowns (and one major throw-up on take-off).

Once we arrived at DFW, we knew the quiet moments of just the 3 of us would end as Tucker would be meeting his brothers and extended family. As we walked through the hallway to the doors leading us outside of customs, we heard shouts of "here they come!" What a sight it was to walk out and see 50+ friends and family welcoming us home. Aidan and Noah ran up to meet their baby brother. We were a family of 5 now.

The last 5 years have flown as my little bundle of energy has become a Daily boy. Each child in our family brings a different flavor and facet. Tucker is our sanguine son. He never meets a stranger, knows everyone's name, plays with anybody, loves all animals (especially worms right now). He's all boy through and through. He's our little fearless jock and still our cuddlebunny. He has a great sense of humor and loves to tell knock-knock jokes.

And most of all, he's our son.

Mirror, Mirror, on the Wall

Titus is finding himself in the mirror these days. And, they have been working on the word "Baby" with him. When we say/sign baby, we hand him his baby. He actually has two baby dolls, but as you can see, he prefers one over the other.

Family Pic

With 5 boys, it's next to impossible to get one shot where we are all looking at the camera. So, this is about as good as it's going to get.

Happy Easter everyone!