Living Life

Jesus, Me, and the Kitchen Table

Four Years Ago…

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Words cannot express how I feel towards all of you who have sent notes, messages, flowers, etc this week. This could have been a difficult week if not for so many sweet, thoughtful friends who remember us at this time each year.  I always go back to work on Monday after the start of the new year. There hasn’t been a year go by since that day four years ago that I don’t remember how I dreaded going back to work, when most of the years past I was ready. When I get off work now, I recall how I had to rush home and get Chloe to Mt. Vernon for dance…and the rest of that evening…  I remember how our family was separated between Dallas and Tyler, some with me and some with Emmarie. And how sweet Chloe was already in heaven! How so many friends and people who didn’t even really know  us prayed – and prayed hard!

In some ways it’s really not hard to believe it’s been 4 years ago today. Four years since we held our precious Emmarie and Chloe, since we tucked them in at night, or I washed their hair, hugged them, said bedtime prayers, sat and rocked them while Richard sang to them, read the Bible with them, explored science concepts and learned about famous people in history, read and write together in our homeschool, rushed home from work to bounce them out of the door to dance class or church, and so many other things. Not to mention the last time I walked, dressed myself, or accessed certain parts of our house, and worked on my doctorate degree. I know many of you will react with the “sad” face. But that’s not the point of this post. I am not sad. Yes we miss them so much, and yes – I wish I could walk – right now – wish that I didn’t have to go through all the stuff I have to do daily just for health and well-being as a person with SCI, wish that we could have a “normal” life again.

But guess what? It’s just like I said from day one. God is good and faithful!  He has not let us down even though we’ve had other struggles in addition to these! Through our story, I am told that many lives have been changed – and I sincerely hope that is true. I hope that each of you cherish your kids and your family. That you don’t take for granted the basic things in this life like being able to sit yourself up just because you have an intact spinal cord.  You can reach the cups in your cabinet, get into your pantry, take a quick shower or a bubble bath.

More than anything else in this world — Emmarie and Chloe, Richard and I want you to know Jesus Christ. We want you to have a relationship with the living God! We want you to live for Him, to make Him the Lord over your life, and to know the love, mercy, joy, and peace that ONLY comes through Him. No matter the storms that come, you can have joy in the midst of adversity.

My goal in life is to make Him known to others. Whether it is through my job as I work with teachers, parents, students, and others, or through blogs and videos, Facebook posts, and through direct ministry opportunities, I want people to know Jesus. I want my life to count for Him, to impact eternity!

So back to my original point… yes I tend to go on tangents. Thank all of you SO much for the encouragement and love you shower us with not only at this time of the year, but throughout the year.

Today means we are one day closer to being with Jesus and with our girls. Today is one day closer to walking again – and I still believe in miracles and healing, so I am “standing” on faith to see this happen on earth.  After all, part of the Lord’s prayer is, “Let Your kingdom come, let Your will be done on Earth as it is in heaven”!  Amen!

 

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Rant

For years now I have worked in a career of helping others; helping children who are blind or visually impaired to learn, helping families find resources, and have even been on the receiving end of these same services myself as a child and adult.  Texas has an excellent  entity called the Division of Blind Services under an agency called DARS.  The Blind Children’s Program and the transition program offer a huge amount of support to qualifying consumers.  As an adult the Vocational Rehabilitation program has been a huge help to me personally.  I wear biopics for driving.  These are glasses that help me see the details like reading signs through telescopic lenses.  They are very costly and the VR program has purchased these glasses for me on 3 different occasions over the pat 20 years. For this I am extremely grateful! I have never had a single problem with the Division for Blind Services.  I cannot, however, say the same for the Division for Rehabilitation under DARS.  

You see, the rehab division has a waiting list for services.  I remember a few years ago the state was going to impose a waiting list for the blind children’s program and the visual impairment field fought it heavily – and we won!  Hmmm… wonder what happened on the rehab side?  When I was in Baylor still in Rehab, I was told I needed to call DARS rehab division as soon as possible to apply and get on the waiting list for the comprehensive rehab program.  I did this.  That was in April. By August I think I finally got on the waiting list.  But by that time almost all that the comprehensive rehab program would have paid for was already done – through a ton of donations and volunteers.  This included things like my home modifications including the addition of an accessible bathroom and closet and purchasing a wheelchair accessible van that I can drive. But at least I was on the waiting list and that would pay for additional physical therapy.  But then one day my counselor calls me and asks me if I think I would rather apply for vocational rehab services since I was already back to work part time.  The point is I DON”T KNOW! That is what they are for… to inform me! Unfortunately, I couldn’t get to the phone the day she called, so she left a message.  And since then I have been unable to reach her – I’ve left her messages.  

So also back in August I applied for other services through an agency called DADS – Division of Aging and Disability Services. They have a program called Community Based Alternatives.  I understand they would pay for someone to come in and help with household chores and getting me dressed.  They would approve so many hours a week.  In August they told me that in a couple of weeks someone would call to arrange an evaluation.  No one called until November! Then the person, who was really nice, just wanted to know if I was still interested in the program.  I said “yes”.  She said services would be available in December and someone would be calling me to set up an evaluation.  It’s January and no one has called.  

A few weeks ago when Richard hurt his back and we could not cook, clean, and get me dressed, it all came to a head.  Stress levels were high.  Our friends came to our rescue, coming in to get me up in the mornings, help me to bd at night, bringing food, doing the dishes, taking out the trash, etc.  But I got on the bandwagon of trying to rouse up some services.  My friend who is a social worker gave me the phone number for the local DADS office and my interest list number – that’s like my account number, essentially.  I called the number and the first option was to apply for services.  That’s not what I needed.  The second option was for people who already had services, and none of the other options applied to me.  I ended up calling back numerous times and trying eat option.  But i never once got through to a person.  It would tell me to call somewhere else “for information” – no doubt more pre-recorded messages.  

Sorry for the rambling… but here’s my point at last….

I’m now paralyzed, my husband is blind, and we can’t get help. But there are plenty of other people much better off than we are physically, and they get help.  They have people coming in to do the very things we need done.  But i can’t even get someone on the phone!  This is ridiculous! I’m not down on people who get services they NEED, food stamps, all of it.  But when we had to fight like crazy just to have our mail delivered to a mailbox at the end of our driveway instead of the community mail box location, which is totally inaccessible,  and now we can’t even get an evaluation…. REALLY?  

This situation makes me understand what parents go through sometimes when they have children with multiple disabilities.  They have to learn to navigate “the system” and what a disjointed “system” it is.  So many acronyms, people, programs, guidelines, etc. Helps me understand what they go through and their frustrations. 

Having said all of that, I know we are very blessed.  It’s just frustrating and a little scary because if something really happened to Richard to where he was unable permanently to do the things he does, The devil tries to make me think I’m going to end up in a nursing home… even though I have a van and am able and do drive myself to work, grocery store, etc.  This has been a real fear of mine.  So yesterday when he re-injured his back, this fear came on me again.  And I almost let it get ahold of me.  But as I drove off to go get some lunch for us, I was like, “Nursing home – my behind! I am not going to end up there!” And after that I have felt more peace about the situation.  But we still do need help.  Time to get back on the phone…

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