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".

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.

Somebody's Praying

Many of you have emailed asking for an update from the last few weeks of doctor's visits. Here's what we know to-date.

On Sunday, May 18, Becky, Titus and I drove down to Houston for his visit with the glaucoma specialist. We had a good trip and stayed at the Hilton next to the hospital (still using all those Hilton Honors points I have from years ago of traveling). Early the next morning, we showed up for his evaluation under anesthetic with full expectations that they would take him straight into surgery. We had the same anesthesiologist we had last time (who is wonderful) and a relief to us to have someone who knows Titus and his condition. After they took him back, Becky and I settled into the waiting room expecting to be there for several hours. You can imagine our surprise when Dr. Feldman came out 45 minutes later and said "his eye pressures are fine - no need for any further surgery - you're free to go home as soon as he comes out of recovery". We were stunned (and asked him to repeat it all again). This means that the channels they installed in the two previous eye surgeries are doing the job of regulating his eye pressure and therefore controlling the glaucoma. Titus bounced back from anesthesia pretty quickly and by 11am, we were back in the car on our way back home to Frisco. All I can say is, somebody was praying.

Titus will still have very limited vision - if any at all. Although Dr. Feldman will not use the word "blind", he was very clear that the optic nerve was never fully formed, there was damage done by the glaucoma, and at this time, there is no known cure/surgery for this. Until Titus can communicate, we will not know how much sight he has. We do know he responds to light and dark, and we feel he can see shapes/shadows, but time will tell. We are still coming to terms with this. It's not like we didn't know this, but to have it finalized by the doctor is still hard. I began doing research on deaf-blind children and programs, but had to stop. Like with many things we've learned, we have to forge ahead and make a plan, but there are some days, you need to be quiet and grieve a bit.

The following Wednesday, May 21, Titus had his MRI/CT scan. This had been previously scheduled for earlier in the month, but was postponed since the machine had broken down. It was another early morning to get up and be at Medical City early, but they were right on schedule and by noon, we were back home. We had 3 doctors requesting the results of the MRI/CT scan: the ENT (Dr. Bauer) was the primary doctor since he's looking to see the make-up of Titus ears and if he will be a candidate for cochlear implants, the Neurosurgeon (Dr. Price) who would be checking the status of the Dandy-Walker variant (cyst at base of brain) and determine the need for more MRIs and would have input into the cochlear implants, and the Geneticist (Dr. Cramer) who is still looking for clues of any syndromes that Titus may have.

Yesterday, the assistant for the neurosurgeon called to let us know that Dr. Price had reviewed the MRI and did not detect the Dandy-Walker variant (cyst). We know that last month when we met with her, she had reviewed the MRI from when Titus was 2 weeks old and saw the cyst then. We know she talked to us about Dandy-Walker (which can cause severe motor skills delays) and now she is telling us it's not there and she doesn't need to see us back in her office for a follow-up. If we were stunned when Dr. Feldman told us his eye pressures were fine, you can only imagine how stunned we were to hear this news. In fact, I'm still in shock. Again, all I can say is, somebody's praying and God still has the final word.

We heard today from the ENT and have a scheduled appointment with him on June 5th. He has not received the MRI results yet, but will by the time of our appointment. Our prayer is that Titus is a candidate for cochlear implants - and if so, we can make a plan for those to be implanted.

Paul had applied for and was approved for intermittent FMLA at work, which means he can now take time off when needed (up to 12 weeks) to help attend to Titus. And, we are still waiting to hear if we were approved for MDCP (Medically Dependent Children's Program). We have had our nurse visit and social worker visit a month ago, and are awaiting the pediatricians office to complete their paperwork. Once we are approved for MDCP, Titus will be approved for Medicaid - which will also allow us to start therapy back. Currently, our insurance only pays for 20 days of therapy (which we have almost exhausted) and considering that Titus will need several types of therapy (speech, occupational, and physical) we need to get him into a good program that will begin working with him. Becky had a visit with one of the therapy centers yesterday and was very pleased with how they worked with Titus (they wore him out after 15 minutes), but also how they showed/instructed her to work with him. They were also very encouraged on how's he's progressing. They feel his development is around 2 months of age - which is how we feel he's been responding. He is lifting and holding his head more and more - and if on his belly, can kick those legs to scoot around a bit (ok, maybe an inch - but I was cheering him on big time). And again, I know somebody's praying for his development.

We also have set up an appointment with a financial planner who specializes in special needs trusts. If Titus is approved for MDCP and Medicaid, he can not have any assets or savings and cannot be the beneficiary in our will, or it will immediately disqualify him and he could lose his benefits for life. A special needs trust can be set up legally to assist in some ways and we will be learning how to do that along with having our will updated. Honestly, as a father, having to remove him from the will has really hit me hard, but I know his heavenly Father has it all in control and will never remove him from his spiritual inheritance.

This week, Becky and Paul have come down with a bit of a cold/drainage and Titus has caught it. So far his lungs are clear and his breathing is fine, but he has a little hacky cough and we are suctioning him every few hours. But even with a cold, we are seeing marked improvements in his breathing. He's still on oxygen, but his levels are consistently high. We are testing him at lower levels or without oxygen and he is going longer without each time. And even with a cold, Titus is sleeping more and more at night. Last week, his monitors went off only 1-2 times a night - which is a HUGE improvement over 2-3 times an hour. We actually have gotten some good sleep and I know (based on several emails we have received) many of you have been praying for rest for us (please DONT" STOP! )

As Titus turned 6 months old, I couldn't help but reflect back over the last 6 months. Life has certainly changed, we have learned more information, met more doctors/nurses, spent more times in hospitals than ever imagined, have had (and continued to have) sleepless nights, felt completely helpless at times and have shed more tears than you can imagine. But, we have also felt peace, felt the prayers, and know we have been carried through by countless prayers of people we know and don't know. As I stated once before, we have always wanted this to be a journey of faith and not a journey of fear. And, one of the most beautiful gifts we have received is that Titus is the happiest, most content baby you will ever meet. He rarely cries, he greets you with a huge toothless grin, he laughs and giggles, he is filled with joy and we are blessed to be his parents.

At our Father-Son campout 2 weeks ago, one of the boys (Christian Loth) came up and asked me how Titus is doing and let me know he's still praying. At Becky's GEMS cookout, numerous parents let us know that their children still pray for Titus every night. So Christian and all you boys and girls that are praying for Titus - thank you! God hears your prayers and is answering them in a mighty way.

Please pray for these things in the next few weeks:

• Our appointment with the ENT on June 5 and that Titus will be a candidate for cochlear implants.
• Our application for MDCP will be approved so we can begin therapy and continue home health care visits.
• Titus' lungs will continue to strengthen and we can wean him off of oxygen.
• Titus, Becky, and Paul with their colds.
• Becky and Paul as they deal with all the diagnosis, planning, and change.
• Guidance and direction as a special needs trust is put into place and wills are updated