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.

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!