WOW! We have been in Texas for over a year now! Where has the time gone?!? For the first time ever my boys returned to the same school. We have been hoping and praying for this to happen for years; For our transitional life to settle down, to find a routine, to call a place home. Neither Jake or I are in love with Texas, and to be honest, the day God says it's time to move on I think we will both be packing boxes. But we are here for a time, and in the time we have spent so far we have seen miracles!
Since we have been here, we have had a lot of bumps in the road. A 6 year wait list for JT to get medicaid, newly diagnosed seizures, an enormous amount of new equipment purchased, issues with school not being able to work with Ethan, delays for the twins and more. On the other side we have seen God move in ways I don't think he could have moved in NOVA. Here JT received a special needs bike, which he can now ride all on his own, a number of fabulous doctors, all of the equipment was paid for by donations of others and insurance, medications have been paid for, E has a great teacher and again, so much more!
Right now we are STILL waiting for JT's fund to come in. It should be (haha) any day now, which will be life changing! E is on new ADHD medication. The twins are thriving at two years old, after arriving into this world at two pounds. Our amazing middle child, Caleb, has started pre-school and is really showing off his amazing heart and smarts. And Jake still LOVES Rackspace - a company he has been with for 10 years now!
I found Beachbody and have lost just shy of 50 pounds. I am now a coach and am loving helping others reach their goals. My dream is to inspire others, and to show them that IT CAN BE DONE! If I can do it with five kids, with one that has special needs and twins who have anywhere from 2-6 therapy sessions a week anyone can!
Today Jake and I had a big heart to heart. In the midst of so many trials things have been hard in some areas of our life. Jake's greatest strength may also be his greatest weakness. He loves me SO much he just wants me to be happy at the sake of his happiness. After a long discussion and me telling him over and over again that this isn't what I want, we decided to make a change. I am not ready to share that change just yet, but I am confident in the Lord and in his plan for our family. If you DO pray, pray for us as we seek the Lord, as we seek wisdom, guidance and do our best to follow him and help our children learn about his goodness, love and mercy.
I hope this update finds you well and thank you for your prayers!
Sunday, October 11, 2015
Monday, August 3, 2015
Life gets in the way
I realized the other day I never updated the blog on JT's newest condition. Of course, one thing lead to another and I forgot to post. Then I realized again that I hadn't updated and, well, you know that little thing called life, just keeps getting in the way. So here I am making a point to update you all! The last few weeks have been a whirlwind.
Let me take you back a little to explain how we got to where we are. In the fall, after school one day, JT fell asleep on the sofa. No big deal. I didn't want him to sleep too long because I wanted him to sleep that night. I went over to wake him up. He was a log! Not only was he impossible to wake up but his face was pale and his lips had virtually no color to them. I called the neurologist. We hadn't ever seen anything like this before and it was kind of scary. The neurologist said to watch him, it could be a sleep apnea thing... if needed we could always do a sleep study. It didn't happen again, so we just left it alone. Then in the last few months it began happening more and more. He would kind of zone out, not really talk to you and go ghost white. He couldn't support his weight, he wasn't really holding his head up well... Recently it happened while he was in physical therapy. He did fine for OT then when the PT came in he went ghost white, lost color in his lips, non responsive... she said it was possible that he was having domal seizures. She said that it is common for children to begin having the at the age of 4 or 5. Well, Jt's began at 5. We came home, he napped, then he threw up everywhere! I was SO happy he threw up! I thought, "super! It's just a bug". Then it happened again about a week later. I contacted JT's pediatrician and took him in to see her. She got in touch with the neurologist and they scheduled an EEG along with some blood work. It happened one more time before I could get him into the tests. Okay, so here we are up to date. One morning, I took Jt into the hospital for his EEG. He was amazing! The kid was talkative, chatty, kind, held conversations with everyone he came across. He was on his game! I thought to myself "well, this is a bust, this kid was AMAZING the entire time! Nothing!" The next morning at 8am my phone rang, I knew who it was without even looking at it. I got on the phone and my jaw dropped as he spoke. "So, looking at Justin's test results I want you to know I read them blind first." What he means by that is that he didn't know whose they were or the child's history. "When I first read them, I thought for sure it was an epileptic patient. He was in seizure the entire hour and a half he was hooked up." WHAT?!??! Are you kidding me?? He was amazing! I was with him the entire time! We were talking, laughing telling jokes... HOW could he be in seizure the entire time??! The doctor continued "At one point he had a 10 minute build up to what I would have thought would have turned into a major seizure, but it went away." I am telling you! I could not even guess when that 10 min was! I was and am simply dumbfounded. The doctor continued, we talked some more about what this all means, when to call EMS what could happen to Justin if we don't get the seizures under control... (Basically, he will lose all of the years of hard work in therapy and may never actually walk.)
Right now he is on seizure medication. Since we have no way of knowing WHEN he is having a seizure, I couldn't tell you if it's working or not. Right now the doctor doesn't feel we need more tests. Right now he wants to get them under control. So, he we are, watching him like a hawk, praying the medication works! So far, we haven't seen anything that concerns us, but let's face it, with 5 kids going in different directions all day long I don't sit and watch him constantly. We watch him, we check on him, we continue to make him work and learn but it's impossible to know if the medication is working, at least from my perspective.
In August we will see the neurologist again. He said he would sit down, show me the tests and talk to me about it all. I am praying Jake can take the day off and come with me, he always has great questions that I never think of. I am also hoping and praying we can find a sitter to watch the rest of the army so we can go and learn and focus. So, that's that and those are our prayers!
- The medication works and JT has no more seizures
- Jake can come to the doctors apt
- We can find a sitter to watch the rest of the kids
Thank you all for your patience and your prayers! We know Jt is in the Lord's hands!! There is no doubt about it. He is simply an incredible little boy who loves the Lord with all of his heart! God is going to use Justin for greatness, for His glory! This is just part of his journey, his story.
Thanks, be blessed!
Let me take you back a little to explain how we got to where we are. In the fall, after school one day, JT fell asleep on the sofa. No big deal. I didn't want him to sleep too long because I wanted him to sleep that night. I went over to wake him up. He was a log! Not only was he impossible to wake up but his face was pale and his lips had virtually no color to them. I called the neurologist. We hadn't ever seen anything like this before and it was kind of scary. The neurologist said to watch him, it could be a sleep apnea thing... if needed we could always do a sleep study. It didn't happen again, so we just left it alone. Then in the last few months it began happening more and more. He would kind of zone out, not really talk to you and go ghost white. He couldn't support his weight, he wasn't really holding his head up well... Recently it happened while he was in physical therapy. He did fine for OT then when the PT came in he went ghost white, lost color in his lips, non responsive... she said it was possible that he was having domal seizures. She said that it is common for children to begin having the at the age of 4 or 5. Well, Jt's began at 5. We came home, he napped, then he threw up everywhere! I was SO happy he threw up! I thought, "super! It's just a bug". Then it happened again about a week later. I contacted JT's pediatrician and took him in to see her. She got in touch with the neurologist and they scheduled an EEG along with some blood work. It happened one more time before I could get him into the tests. Okay, so here we are up to date. One morning, I took Jt into the hospital for his EEG. He was amazing! The kid was talkative, chatty, kind, held conversations with everyone he came across. He was on his game! I thought to myself "well, this is a bust, this kid was AMAZING the entire time! Nothing!" The next morning at 8am my phone rang, I knew who it was without even looking at it. I got on the phone and my jaw dropped as he spoke. "So, looking at Justin's test results I want you to know I read them blind first." What he means by that is that he didn't know whose they were or the child's history. "When I first read them, I thought for sure it was an epileptic patient. He was in seizure the entire hour and a half he was hooked up." WHAT?!??! Are you kidding me?? He was amazing! I was with him the entire time! We were talking, laughing telling jokes... HOW could he be in seizure the entire time??! The doctor continued "At one point he had a 10 minute build up to what I would have thought would have turned into a major seizure, but it went away." I am telling you! I could not even guess when that 10 min was! I was and am simply dumbfounded. The doctor continued, we talked some more about what this all means, when to call EMS what could happen to Justin if we don't get the seizures under control... (Basically, he will lose all of the years of hard work in therapy and may never actually walk.)
Right now he is on seizure medication. Since we have no way of knowing WHEN he is having a seizure, I couldn't tell you if it's working or not. Right now the doctor doesn't feel we need more tests. Right now he wants to get them under control. So, he we are, watching him like a hawk, praying the medication works! So far, we haven't seen anything that concerns us, but let's face it, with 5 kids going in different directions all day long I don't sit and watch him constantly. We watch him, we check on him, we continue to make him work and learn but it's impossible to know if the medication is working, at least from my perspective.
In August we will see the neurologist again. He said he would sit down, show me the tests and talk to me about it all. I am praying Jake can take the day off and come with me, he always has great questions that I never think of. I am also hoping and praying we can find a sitter to watch the rest of the army so we can go and learn and focus. So, that's that and those are our prayers!
- The medication works and JT has no more seizures
- Jake can come to the doctors apt
- We can find a sitter to watch the rest of the kids
Thank you all for your patience and your prayers! We know Jt is in the Lord's hands!! There is no doubt about it. He is simply an incredible little boy who loves the Lord with all of his heart! God is going to use Justin for greatness, for His glory! This is just part of his journey, his story.
Thanks, be blessed!
Friday, June 26, 2015
The fund
Today I received an email from out attorney asking me to call her ASAP! I called Jake at work, he was in a meeting. I then called our attorney. I could tell by the way she said my name, but I wasn't going to guess. JT GOT THE FUND! My heart is STILL pounding in my chest! The fund has 10 days to render it's verdict but they almost never deny when the case is as strong as ours is.
The lawyer sent us the documentation of their verdict. For the first time, I began to read through the case work. Up until now Jake has been reading and replying. It was simply too much for me emotionally. It would have taken me weeks to read through it all. I just can't read through it without being heart broken. Today I began to read. I burst into tears. There is so much I never knew, not really anyway. The first page talks about JT's respiratory distress, I knew of it but not how bad it was. I knew a lot of things, but NICU doctors and nurses don't tell you a lot b/c they don't want you to panic. I remember after delivery, Jake and I went down to the NICU to visit JT. We weren't allowed in. He was having a terrible time. Nurses and doctors were rushing in, curtains were closed, doors were shut. We sat out in that hallway, waiting to see him, praying for him, knowing it wasn't going well. Nurses would hurry in and out, smiling a little each time, trying to relieve our concern, bless them. Reading this documentation is reliving it all. The contractions at 25 weeks, 29 weeks, being sent home, the delivery, loss of heart beat, rapid breathing and so much more.
My heart is overwhelmed. Overwhelmed with joy and with sorrow.
I give God all praise and glory. I thank him for taking care of JT. When I was in the NICU a doctor sat down with me to tell me about his brain bleed. I sat there listening, I heard God say to me "He is going to be okay." I have NEVER worried about JT! I know that he is in God's hands! I knew that I didn't know if that meant he would be perfectly fine or if that meant that God was going to take care of him. Now I know that God meant he was going to care for him, provide for him, love him and give him incredible gifts! I praise God that JT is in fact "okay". He is more than okay. He is bright, funny, loving, caring, considerate, and so much more. His love and memory of music is astounding! My little boy may never really walk, but life is so much more than walking.
Praise God today with me friends! Praise him and know that he keeps his word.
Here is a link to JT's song. This is the song I heard EVERY single day while driving to or from the NICU to see him. I heard it again on the radio today. Enjoy it. I sing it to JT a lot! "Be strong in the Lord and never give up hope, you're gonna do great things, I already know! God's got his hand on you, so don't live life in fear. Forgive and forget but don't forget why you're here. Take your time and pray, thank God for each day, his love will find a way...."
https://www.youtube.com/watch?v=9PphW6KI6VI
The lawyer sent us the documentation of their verdict. For the first time, I began to read through the case work. Up until now Jake has been reading and replying. It was simply too much for me emotionally. It would have taken me weeks to read through it all. I just can't read through it without being heart broken. Today I began to read. I burst into tears. There is so much I never knew, not really anyway. The first page talks about JT's respiratory distress, I knew of it but not how bad it was. I knew a lot of things, but NICU doctors and nurses don't tell you a lot b/c they don't want you to panic. I remember after delivery, Jake and I went down to the NICU to visit JT. We weren't allowed in. He was having a terrible time. Nurses and doctors were rushing in, curtains were closed, doors were shut. We sat out in that hallway, waiting to see him, praying for him, knowing it wasn't going well. Nurses would hurry in and out, smiling a little each time, trying to relieve our concern, bless them. Reading this documentation is reliving it all. The contractions at 25 weeks, 29 weeks, being sent home, the delivery, loss of heart beat, rapid breathing and so much more.
My heart is overwhelmed. Overwhelmed with joy and with sorrow.
I give God all praise and glory. I thank him for taking care of JT. When I was in the NICU a doctor sat down with me to tell me about his brain bleed. I sat there listening, I heard God say to me "He is going to be okay." I have NEVER worried about JT! I know that he is in God's hands! I knew that I didn't know if that meant he would be perfectly fine or if that meant that God was going to take care of him. Now I know that God meant he was going to care for him, provide for him, love him and give him incredible gifts! I praise God that JT is in fact "okay". He is more than okay. He is bright, funny, loving, caring, considerate, and so much more. His love and memory of music is astounding! My little boy may never really walk, but life is so much more than walking.
Praise God today with me friends! Praise him and know that he keeps his word.
Here is a link to JT's song. This is the song I heard EVERY single day while driving to or from the NICU to see him. I heard it again on the radio today. Enjoy it. I sing it to JT a lot! "Be strong in the Lord and never give up hope, you're gonna do great things, I already know! God's got his hand on you, so don't live life in fear. Forgive and forget but don't forget why you're here. Take your time and pray, thank God for each day, his love will find a way...."
https://www.youtube.com/watch?v=9PphW6KI6VI
Thursday, May 14, 2015
News comes in waves
Sorry I haven't updated you all. Life has been busy, very wonderful and very busy.
To back track a little, we received an email on my birthday stating that all of the documentation for Justin's case had been sent off to be filed and the process to begin. That alone took my breath away. We also received a letter informing us of the steps that come next. One department gets the paper work and has 48 hours to process and file it. Then it gets assigned a panel and a destination. That panel has 60 days to render a decision. After that decision is made it will go to the fund for them to make their verdict. I begin to lose track of who gets how many days. When you add it all up, if things go the long way, we are looking at another year. If things go well, we are looking at a few months. Today we received another email. Justin's case has been filed and a panel has been chosen. So, set you clocks, calendars, whatever. The 60 days starts now!
Keep praying friends! Within 60 days we will know more. Thank you for inquiring, caring, loving and supporting us through this. Our hearts have been so full lately. We have SO much to give thanks for. We have to give God all the glory! He has touched the heart of so many towards our family. We are truly blessed and we know that God works for the good of HIS kingdom, we are thankful to be in his plans and in his hands.
Many blessings!
To back track a little, we received an email on my birthday stating that all of the documentation for Justin's case had been sent off to be filed and the process to begin. That alone took my breath away. We also received a letter informing us of the steps that come next. One department gets the paper work and has 48 hours to process and file it. Then it gets assigned a panel and a destination. That panel has 60 days to render a decision. After that decision is made it will go to the fund for them to make their verdict. I begin to lose track of who gets how many days. When you add it all up, if things go the long way, we are looking at another year. If things go well, we are looking at a few months. Today we received another email. Justin's case has been filed and a panel has been chosen. So, set you clocks, calendars, whatever. The 60 days starts now!
Keep praying friends! Within 60 days we will know more. Thank you for inquiring, caring, loving and supporting us through this. Our hearts have been so full lately. We have SO much to give thanks for. We have to give God all the glory! He has touched the heart of so many towards our family. We are truly blessed and we know that God works for the good of HIS kingdom, we are thankful to be in his plans and in his hands.
Many blessings!
Wednesday, April 29, 2015
"Home Stretch"
Home stretch, this is the subject line of the last email we received from our lawyer. When I say it is emotional, I think it might be an understatement. Ever since I learned that the neurologist is going to support us, I cry every time I talk about the fund. I cannot control myself. Prayer or praise, I cry. Today we got an email stating she received the signed letter from the neurologist supporting our case. She then asked that we read and review the petition, a long and hard read. It is so emotional to go through and read and relive all of JT's days. Read about the deliver, his shallow breathing, apgar scores, brain scans... I relive every long day of the NICU. It's emotionally exhausting. In fact, I am crying right now just thinking about it all. As we sit, we read, we cry, we give thanks to God and we pray. We have to read through it, make sure it's all correct. Then after that, she wants to make sure we have ALL of the documentation she needs by Friday! This Friday, like in 2 days Friday! Guys, this requires a miracle. I am not kidding. Jake has been my rock! He has been incredible. I have found this all to be extremely overwhelming. It's so much I just want to run and hide and stick my head in the sand. Jake has been up until 1 or 2 in the morning compiling information, working on spread sheets (Secretly I think he likes that part) and getting as much information together as he can find. The last bits that she is looking for is almost impossible. We have to prove payment. We have to prove that we paid bills, that we bought diapers. I don't know about you, but we don't tend to keep receipts. So although we have a statement that says we paid x amount of money to target, we cannot prove that it was for diapers or a special toy for him. Somehow, by God's grace and mercy we need to find proof that we bought him special socks and thickener so he could drink fluids without aspirating. Somehow!
So here we are, at the end, in the home stretch and we are emotional. You name it, we feel it. Excited, scared, overwhelmed, overjoyed... for every emotion, there is an equal and opposite one. So please, praise God that we have come this far. Praise God for ALL Justin has received this month. New equipment, a new special needs bike... all things we have been blessed by! God is providing and we see that. Pray for our peace, for my peace. Pray for a calming that can only be from him. Pray we are able to gather what we can by Friday. Pray for eyes to see and the mindset to seek and find it all.
Next week the case will be handed over to the panel of doctors. This is it! The panel of doctors will review the case and make the decision.
My prayer:
Oh Lord, have mercy on us! Provide for JT. When I was told of his brain injury you told me "do not worry, he is going to be okay." I heard you, I have held on tightly to those words over the years. I have trusted you and I have seen your love for Justin. I also have the joy of seeing his special love for you Lord. Provide for him. You are mighty and you are great and you provide all we have. We praise your name and ask that you calm our hearts and our minds. Bring us peace where angst lies. We put our hope and our faith in you Lord.
Amen.
So here we are, at the end, in the home stretch and we are emotional. You name it, we feel it. Excited, scared, overwhelmed, overjoyed... for every emotion, there is an equal and opposite one. So please, praise God that we have come this far. Praise God for ALL Justin has received this month. New equipment, a new special needs bike... all things we have been blessed by! God is providing and we see that. Pray for our peace, for my peace. Pray for a calming that can only be from him. Pray we are able to gather what we can by Friday. Pray for eyes to see and the mindset to seek and find it all.
Next week the case will be handed over to the panel of doctors. This is it! The panel of doctors will review the case and make the decision.
My prayer:
Oh Lord, have mercy on us! Provide for JT. When I was told of his brain injury you told me "do not worry, he is going to be okay." I heard you, I have held on tightly to those words over the years. I have trusted you and I have seen your love for Justin. I also have the joy of seeing his special love for you Lord. Provide for him. You are mighty and you are great and you provide all we have. We praise your name and ask that you calm our hearts and our minds. Bring us peace where angst lies. We put our hope and our faith in you Lord.
Amen.
Tuesday, April 14, 2015
Big prayers!
I have been speaking to our lawyer more and more these last few weeks. It gives me great hope that this journey is truly coming to an end. After two years of compiling information, finding record of every single doctors appointment since JT was born, and now searching our financials for bills paid to prove we paid the bills we are almost there. This time next week (we hope and is one of our prayers) Justin's case will be sent to a panel of doctors who will most likely be at UVA. These doctors will review Justin's case and within two weeks they will decide their verdict. What next? Okay, if they say YES then his case will finally go to the committee of the Virginia Birth Injury fund. They have never said no when the panel has said yes. So, they will then approve and the lawyer tells me things go fast from their. We will begin to see back pay for the last 5.5 years. We will then also receive money so that I can hire an aid and pay them. Just in time for summer, a HUGE blessing!
If the panel disagrees and says no, the case will still move onto the committee. The committee has been known to say yes even if the panel says no. If they say no too, we go to court. Because we no longer live in the area, you can imagine how stressful and time consuming this would be. Clearly our prayer is that the panel of doctors would see Justin's case and agree with us that it was in face malpractice on the part of the OBGYN.
I am so emotional over all of this lately. I cannot express what it will be like for us to not have to worry about where the money will come from. We moved to TX to help our financial situation, sadly, it hasn't helped. In NOVA we couldn't afford cost of living but at least JT's medical bills were paid for. Here, we can afford to live and have a stunning forever home but we have to pay all of JT's needs out of pocket. I can tell you, financially we may have been better in NOVA. Cost of living does not equal Justin's needs! I will also say, God has been SO good to us in Texas! He has provided our daily bread. He has been there and miracles have happened. How honored I feel to be witness to so many miracles. It's amazing!
So where are we now? Last night my incredible hubby stayed up until 1am organizing and compiling the last bits (almost last bits) of information the lawyer needs to move forward. We still have a lot to do in finding old statements and proof of payment, but I am prayerful the Lord will help us through that too. Today, Jake will email the lawyer all that we have, we will see if she needs more and then the case goes to the panel.
Please pray these next two weeks for this panel. Thank the Lord for their time, their wisdom and their dedication. Please pray that a verdict comes back in JT's favor!
Thank you!
If the panel disagrees and says no, the case will still move onto the committee. The committee has been known to say yes even if the panel says no. If they say no too, we go to court. Because we no longer live in the area, you can imagine how stressful and time consuming this would be. Clearly our prayer is that the panel of doctors would see Justin's case and agree with us that it was in face malpractice on the part of the OBGYN.
I am so emotional over all of this lately. I cannot express what it will be like for us to not have to worry about where the money will come from. We moved to TX to help our financial situation, sadly, it hasn't helped. In NOVA we couldn't afford cost of living but at least JT's medical bills were paid for. Here, we can afford to live and have a stunning forever home but we have to pay all of JT's needs out of pocket. I can tell you, financially we may have been better in NOVA. Cost of living does not equal Justin's needs! I will also say, God has been SO good to us in Texas! He has provided our daily bread. He has been there and miracles have happened. How honored I feel to be witness to so many miracles. It's amazing!
So where are we now? Last night my incredible hubby stayed up until 1am organizing and compiling the last bits (almost last bits) of information the lawyer needs to move forward. We still have a lot to do in finding old statements and proof of payment, but I am prayerful the Lord will help us through that too. Today, Jake will email the lawyer all that we have, we will see if she needs more and then the case goes to the panel.
Please pray these next two weeks for this panel. Thank the Lord for their time, their wisdom and their dedication. Please pray that a verdict comes back in JT's favor!
Thank you!
Friday, April 3, 2015
Merry go round of life, lawyers and funds.
I wrote the lawyer yesterday asking a few questions. You can imagine when she told me the news about the neurologist my emotions took over and I had zero thoughts other than "thank you God!" Once the haze cleared and several people asked the same question I reached out to the lawyer. It turns out, that although the neurologist agreeing with us is HUGE, it's not the end. Jake and I will spend every waking moment compiling all of the last bits of info they need from us. Then when we do, Justin's records will be sent to a medical school. Their a panel of doctors will review his case. If they agree with us, then the committee will not say no. They will pass JT right through to the fund. If they do not agree with us, then we will need to go to court. The lawyer is hoping to submit all of our information to the panel within two weeks. Then the panel has 60 days to respond. If they agree with us, things will move very quickly and we will be reimbursed for everything we have paid out since JT's birth! AND all of his future needs will be met. If they say no, then we will go to court and the process will continue.
So for now, the prayer is that Jake and I will be diligent with our time and will be able to quickly get together the information and medical records still needed. (everything since we have been in TX) Pray we are able to find the correct receipts, CC statements and so on. Pray also for the panel. Pray for them to see that JT does deserve this fund. Pray for our hearts, that we will accept whatever decision in made, that we will continue to trust in the Lord. That we will not lose hope and that we will continue to rejoice in the gifts He has given us.
Looks like we are looking at another 2-3 months!
I will keep you updated as I learn things. Thank you for following along in this journey. Thank you for praying with and for us. We are truly blessed!
So for now, the prayer is that Jake and I will be diligent with our time and will be able to quickly get together the information and medical records still needed. (everything since we have been in TX) Pray we are able to find the correct receipts, CC statements and so on. Pray also for the panel. Pray for them to see that JT does deserve this fund. Pray for our hearts, that we will accept whatever decision in made, that we will continue to trust in the Lord. That we will not lose hope and that we will continue to rejoice in the gifts He has given us.
Looks like we are looking at another 2-3 months!
I will keep you updated as I learn things. Thank you for following along in this journey. Thank you for praying with and for us. We are truly blessed!
Monday, March 30, 2015
The lawyer called
I am sitting here with tears still welling in my eyes. This morning at 9am the lawyer called. She informed me that she was unable to speak with the neurologist on Friday because he had brought the wrong case file to the meeting. I was so down hearted, another delay. Then she said she just got off the phone with him and called me. Are you sitting down? Do you have a box of tissues? The neurologist agreed with us that his brain injury was do to a bad delivery! He is going to write a letter of recommendation stating just that. The lawyer will now send Jt's case onto the fund. There is really no reason they should deny him at this point in time. It is not a done deal, but it's close! So very close!
I started crying on the phone with the lawyer. I tried to call Jake immediately who was in a meeting and the twins therapist was here too. I just couldn't control my tears of joy, relief and years of waiting. The weight lifted off my shoulders is unreal. I keep telling myself not to get ahead of myself. It's not a done deal yet, but this letter will carry a lot of weight and it's exactly what was prayed for!
Oddly, I also find myself a little saddened by this news. What if we had a better doctor? What if she had done a c-section. I know, doctors are human too, they make mistakes. I am not angry with her, I am sad. Sad that it happened to my little boy. In the same regard, my little boy is one of the most incredible people I have ever met! God has a plan for him, God has always had a plan for him. God knows who he is and who he is going to be. I find assurance in that. Justin, my sweet, inspiring, music loving Just in Time is going to change the world one person at a time. I do not know a single person who has ever spent time with him and hasn't been changed by him in a good way. His smile brightens the worst of days and brings joy to the joyless. I might be sad, but I also look at him and wonder what he will be like when I meet him in heaven. Fully functioning brain and body. This kid is exactly who God made him to be, and I find joy and peace in that.
Thank you! Thank you for praying with us, for encouraging us as we have traveled this road! Praise be to God our Father for opening the hearts of so many. I am in awe. I am so thankful, so humbled, so relieved. I could go on and on but I am running out of words. My emotions are consuming me again. A whirlwind of joy and excitement.
I started crying on the phone with the lawyer. I tried to call Jake immediately who was in a meeting and the twins therapist was here too. I just couldn't control my tears of joy, relief and years of waiting. The weight lifted off my shoulders is unreal. I keep telling myself not to get ahead of myself. It's not a done deal yet, but this letter will carry a lot of weight and it's exactly what was prayed for!
Oddly, I also find myself a little saddened by this news. What if we had a better doctor? What if she had done a c-section. I know, doctors are human too, they make mistakes. I am not angry with her, I am sad. Sad that it happened to my little boy. In the same regard, my little boy is one of the most incredible people I have ever met! God has a plan for him, God has always had a plan for him. God knows who he is and who he is going to be. I find assurance in that. Justin, my sweet, inspiring, music loving Just in Time is going to change the world one person at a time. I do not know a single person who has ever spent time with him and hasn't been changed by him in a good way. His smile brightens the worst of days and brings joy to the joyless. I might be sad, but I also look at him and wonder what he will be like when I meet him in heaven. Fully functioning brain and body. This kid is exactly who God made him to be, and I find joy and peace in that.
Thank you! Thank you for praying with us, for encouraging us as we have traveled this road! Praise be to God our Father for opening the hearts of so many. I am in awe. I am so thankful, so humbled, so relieved. I could go on and on but I am running out of words. My emotions are consuming me again. A whirlwind of joy and excitement.
Thursday, March 26, 2015
Trusting in God - you can't go wrong
I believe that I have a great relationship with the Lord. When I am angry, I tell him. When I am happy, I tell him and thank him and praise him. When I am hurt, specifically by him, I tell him. God can handle anything I throw at him. Last year, after the twins and while dealing with cancer, God and I had many middle of the night twins screaming, me crying and asking God why he hated me moments. I asked what did I do wrong, why do you hate me? Why has all this crap happened to me. I am not this strong, I don't want to be this strong! Now, on the other side of that dreadful year I can see his hand so much more clearly.
Earlier this week I posted about the meeting with the lawyer and neurologist. I filled you in on how I am choosing to trust God because I have heard him tell me not to worry. I have heard him say "I've got this." Today, Jake and I were talking money, its a daily conversation in our world. Ethan needs clothes, twins need clothes, boys need shoes, I need clothes after losing 25lbs. Justin's equipment needs, therapy bills (past and present) He still needs botox... the list goes on and on. But, today I said to Jake "I refuse to be an Israelite..." You see, when Jake and I first got married our goal was to read the bible in a year. We still haven't succeeded, but that's not the point. The point is that the book of Leviticus is a hard book to read. Jake and I would sit there and get SO annoyed at the stupid Israelites. I am not kidding! They were such whiners! All they did was complain. God would answer their complaint with a gift and then they would find something else to complain about or better yet, they forgot about the gift from God all together. It was infuriating. It was infuriating until I realized I am so much like that! How quickly I forget the good gifts, the blessings, the grace and mercy. How quickly do I turn and get angry that I didn't get my way. How spoiled am I?!
I continued talking to Jake saying that God has told me he is going to provide this equipment and I am choosing to trust in him. He has been faithful, he has provided our EVERY need since being in TX. He has blessed us beyond what we could imagine!
Because I believe in allowing people their blessings in Heaven I will not share details. I want this to be anonymous and I want them to receive the full blessing of God. In short, Jake and I have the money to buy Jt's wheelchair! Tomorrow we will pay for the wheelchair! Tomorrow has enough worry of it's own, today, today we will rejoice and we with thank God for the kindness and generosity of people. Today we will ask the Lord to bless them as they have blessed us.
Tomorrow is the lawyers meeting which we would still love prayers for. Tomorrow is also JT's IEP meeting. We would love prayers for wisdom for that too. Next year JT goes into Kindergarten. Pray we make the best choices to give Justin the best Kindergarten year he can have.
Today and tomorrow, we will praise God!
The lord has placed Joshua 1:5 on my heart today. "...Never will I leave you; never will I forsake you."
Even when I was angry with God, he did not flee from me! What a great, loving merciful and mighty God I get to serve!!
Earlier this week I posted about the meeting with the lawyer and neurologist. I filled you in on how I am choosing to trust God because I have heard him tell me not to worry. I have heard him say "I've got this." Today, Jake and I were talking money, its a daily conversation in our world. Ethan needs clothes, twins need clothes, boys need shoes, I need clothes after losing 25lbs. Justin's equipment needs, therapy bills (past and present) He still needs botox... the list goes on and on. But, today I said to Jake "I refuse to be an Israelite..." You see, when Jake and I first got married our goal was to read the bible in a year. We still haven't succeeded, but that's not the point. The point is that the book of Leviticus is a hard book to read. Jake and I would sit there and get SO annoyed at the stupid Israelites. I am not kidding! They were such whiners! All they did was complain. God would answer their complaint with a gift and then they would find something else to complain about or better yet, they forgot about the gift from God all together. It was infuriating. It was infuriating until I realized I am so much like that! How quickly I forget the good gifts, the blessings, the grace and mercy. How quickly do I turn and get angry that I didn't get my way. How spoiled am I?!
I continued talking to Jake saying that God has told me he is going to provide this equipment and I am choosing to trust in him. He has been faithful, he has provided our EVERY need since being in TX. He has blessed us beyond what we could imagine!
Because I believe in allowing people their blessings in Heaven I will not share details. I want this to be anonymous and I want them to receive the full blessing of God. In short, Jake and I have the money to buy Jt's wheelchair! Tomorrow we will pay for the wheelchair! Tomorrow has enough worry of it's own, today, today we will rejoice and we with thank God for the kindness and generosity of people. Today we will ask the Lord to bless them as they have blessed us.
Tomorrow is the lawyers meeting which we would still love prayers for. Tomorrow is also JT's IEP meeting. We would love prayers for wisdom for that too. Next year JT goes into Kindergarten. Pray we make the best choices to give Justin the best Kindergarten year he can have.
Today and tomorrow, we will praise God!
The lord has placed Joshua 1:5 on my heart today. "...Never will I leave you; never will I forsake you."
Even when I was angry with God, he did not flee from me! What a great, loving merciful and mighty God I get to serve!!
Tuesday, March 24, 2015
Virginia Birth Injury Fund update and prayers needed!!
Yesterday I received an email from our lawyer back in VA. Her email stated that at 2pm on Friday the 27th she will be meeting with the neonatal neurologist. (my stomach is in nervous knots while writing this). This is it guys! If this doctor agrees that JT's injuries happened at birth then JT will get the fund. Our financial struggles will be greatly reduced! I cannot tell you how hard this year has been and yet, what a blessing it has been. God has granted us so much love and support through our go fund me, friends, fundraisers. We have been abundantly blessed.
I have learned that the Lord provides my daily bread and usually no more than that. It has been an incredible lesson for me. There were a few weeks where, after paying some of JT's bills we had no money. I mean, no money. I couldn't buy bread or milk, I was eeking food out the best I could. Then, one evening a box arrived on our doorstep. It was an amazon prime box full of groceries! I was so confused and then I finally realized, someone bought us groceries. It was at a time where we needed them most. Every time I have prayed about JT's needs and medical bills God has said "don't worry, I have this" I, being a true sinner, look to heaven and say "I am trying with all my might to trust you". Trust doesn't come easy to me. I am a bit of a go getter. I will solve the problem my way. While we have been in turmoil and I have been learning what it means for the Lord to provide my daily bread, I have come to realize that I have been trying to solve the problem on my own. Right now I am a pampered chef consultant. It's something I enjoy and it brings in a little money to help with things. I have been approached by several other consultants to join them in their venture. It has always been tempting but hasn't felt right. Why? Because I truly believe the Lord didn't want my hand in this at all. I believe he wanted to show me that HE will provide, that HE does have this, that I CAN trust him.
So, now that I am at a point where I worry much less, where I can actively see God's hand working and moving and providing I get here. We have been working 2 years to get here. Now I learn the lesson of waiting. I HATE waiting! My nerves get all crazy and I literally get stomach pains. (Great for my diet, lol can't eat!)
Anyway, so here we are, waiting, for the final verdict. My prayer is of course that JT would get the fund, but more than that, my prayer is that Jake and I will be at peace with whatever verdict we get. That Jake and I will know, truly know that we are in God's hands. That JT is in God's hands. That the Lord WILL provide our daily bread and sometimes, no more than that. This fund would relieve so much stress from our lives. The need to wait to order equipment until we have money will be gone. JT will be able to get what he needs when he needs it. Right now we have paid 1/3 of what we owe for his new wheelchair. In NOVA it took 3-6 months to get equipment, which gave us time to save money. Here, we have simply 1-2 weeks! We have the second payment (sort of) but not the third. They will not give us his wheelchair until it is paid in full. Instead of worrying, I choose to trust God,(or try my best to trust) to know he will provide in his perfect timing, which is almost never my timing.
This meeting on Friday is a huge praise and an enormous prayer!
Thank you for joining us in prayer! May our voices be raised to the one who sits on high.
Amen!
I have learned that the Lord provides my daily bread and usually no more than that. It has been an incredible lesson for me. There were a few weeks where, after paying some of JT's bills we had no money. I mean, no money. I couldn't buy bread or milk, I was eeking food out the best I could. Then, one evening a box arrived on our doorstep. It was an amazon prime box full of groceries! I was so confused and then I finally realized, someone bought us groceries. It was at a time where we needed them most. Every time I have prayed about JT's needs and medical bills God has said "don't worry, I have this" I, being a true sinner, look to heaven and say "I am trying with all my might to trust you". Trust doesn't come easy to me. I am a bit of a go getter. I will solve the problem my way. While we have been in turmoil and I have been learning what it means for the Lord to provide my daily bread, I have come to realize that I have been trying to solve the problem on my own. Right now I am a pampered chef consultant. It's something I enjoy and it brings in a little money to help with things. I have been approached by several other consultants to join them in their venture. It has always been tempting but hasn't felt right. Why? Because I truly believe the Lord didn't want my hand in this at all. I believe he wanted to show me that HE will provide, that HE does have this, that I CAN trust him.
So, now that I am at a point where I worry much less, where I can actively see God's hand working and moving and providing I get here. We have been working 2 years to get here. Now I learn the lesson of waiting. I HATE waiting! My nerves get all crazy and I literally get stomach pains. (Great for my diet, lol can't eat!)
Anyway, so here we are, waiting, for the final verdict. My prayer is of course that JT would get the fund, but more than that, my prayer is that Jake and I will be at peace with whatever verdict we get. That Jake and I will know, truly know that we are in God's hands. That JT is in God's hands. That the Lord WILL provide our daily bread and sometimes, no more than that. This fund would relieve so much stress from our lives. The need to wait to order equipment until we have money will be gone. JT will be able to get what he needs when he needs it. Right now we have paid 1/3 of what we owe for his new wheelchair. In NOVA it took 3-6 months to get equipment, which gave us time to save money. Here, we have simply 1-2 weeks! We have the second payment (sort of) but not the third. They will not give us his wheelchair until it is paid in full. Instead of worrying, I choose to trust God,(or try my best to trust) to know he will provide in his perfect timing, which is almost never my timing.
This meeting on Friday is a huge praise and an enormous prayer!
Thank you for joining us in prayer! May our voices be raised to the one who sits on high.
Amen!
Saturday, March 14, 2015
reality strikes
This year seems to be a big birthday year for me. As many of you know, after the twins were born I weighed a ton! I was about 197 and very unhappy with myself. As 2015 began, I struggled a lot emotionally with the struggles life was throwing at us. I had nightmares of dying, leaving my kids behind because I was overweight and unhealthy. Then I realized, this year, I turn 37. Why is 37 a big year for me? My brother Rick passed away at 37 of a heart attack. His two darling children found him and had to call 911. Rick and I were not close when I was younger, but we were on our way to rebuilding a relationship. The last time I heard Rick's voice was exactly one week before he died, it was my birthday. He called to wish me a happy birthday. I saved that message for years. I didn't know at the time how to save it forever, I wish I had.
I received a phone call from Jon at about 1am telling me Rick had died. I think my heart may have stopped beating in that moment. I couldn't breathe. Rick was not the healthiest of men. He drank, smoked, didn't workout and didn't have the healthiest of diets. Sadly, Rick was getting it together! He was trying. He had gotten a nice house and a good job. Rick was trying. I looked at my life and realized, I wasn't trying. I didn't want to die and leave my kids because of my health or lack there of. When we moved to Texas I saw a new endocrinologist. She boldly told me that I was at risk for... heart attack (they run in my family. Both my grandfathers and now my brother died much too young from heart attacks), a stroke (they also run in my family. My Grandmerene had several strokes) Diabetes, which to be honest, I think I may have actually had at the time because my weight was so high. My doctor told me to lose 40lbs! The realization of turning 37, a big year for me because of my brother Rick, and the realization that I was literally setting myself up for more health issues was enough to send me over the edge! The right edge though. I jumped to it. In 8 weeks I lost 20 lbs! I began my diet, and daily exercise. Monday I am going to start a new journey. I still have about 15lbs to go and I am looking to drop a few more pant sizes. Monday I will work my way towards being an online fitness coach. I love fitness, I use to call myself an ex-athlete, now I can say I am an athlete again. I am proud of who I am again. I like me. I am looking forward to this new journey, and although I had to lose my brother to be here I am thankful for the life he lived and I am thankful for the death he died. Jesus has saved my soul. I will one day see my brother again in Heaven. I will get to run to him and hug him and tell him how much I missed him. I will get to say thank you. In his death, he may have saved my life. 37 is a big year for me. I am thankful I am married to a supportive loving husband. I am thankful for those God has placed in my life. I am thankful for my brother Rick. (on a side note, Rick's death also saved my little brother. Jon was once obese and is now a 2 time ironman! All because he saw the tragedy in Rick's death and didn't want to travel that road either. Knowing heart issues are big in our family, it's something we need to be aware of.)
Death is always hard to handle. It's hard to say goodbye, to not see them anymore, to know they had so much more life to live. I think we can honor those who have died by allowing their death to help guide us and mold us. This year, I honor my brother Rick, he died much too young, but I will live my life better because of him.
I received a phone call from Jon at about 1am telling me Rick had died. I think my heart may have stopped beating in that moment. I couldn't breathe. Rick was not the healthiest of men. He drank, smoked, didn't workout and didn't have the healthiest of diets. Sadly, Rick was getting it together! He was trying. He had gotten a nice house and a good job. Rick was trying. I looked at my life and realized, I wasn't trying. I didn't want to die and leave my kids because of my health or lack there of. When we moved to Texas I saw a new endocrinologist. She boldly told me that I was at risk for... heart attack (they run in my family. Both my grandfathers and now my brother died much too young from heart attacks), a stroke (they also run in my family. My Grandmerene had several strokes) Diabetes, which to be honest, I think I may have actually had at the time because my weight was so high. My doctor told me to lose 40lbs! The realization of turning 37, a big year for me because of my brother Rick, and the realization that I was literally setting myself up for more health issues was enough to send me over the edge! The right edge though. I jumped to it. In 8 weeks I lost 20 lbs! I began my diet, and daily exercise. Monday I am going to start a new journey. I still have about 15lbs to go and I am looking to drop a few more pant sizes. Monday I will work my way towards being an online fitness coach. I love fitness, I use to call myself an ex-athlete, now I can say I am an athlete again. I am proud of who I am again. I like me. I am looking forward to this new journey, and although I had to lose my brother to be here I am thankful for the life he lived and I am thankful for the death he died. Jesus has saved my soul. I will one day see my brother again in Heaven. I will get to run to him and hug him and tell him how much I missed him. I will get to say thank you. In his death, he may have saved my life. 37 is a big year for me. I am thankful I am married to a supportive loving husband. I am thankful for those God has placed in my life. I am thankful for my brother Rick. (on a side note, Rick's death also saved my little brother. Jon was once obese and is now a 2 time ironman! All because he saw the tragedy in Rick's death and didn't want to travel that road either. Knowing heart issues are big in our family, it's something we need to be aware of.)
Death is always hard to handle. It's hard to say goodbye, to not see them anymore, to know they had so much more life to live. I think we can honor those who have died by allowing their death to help guide us and mold us. This year, I honor my brother Rick, he died much too young, but I will live my life better because of him.
Monday, March 9, 2015
What just happened
Jake and I have had the same insurance since we were married. It was fine insurance but, then again, not really. Humana, wouldn't pay a dime for any of JT's equipment or needs. His equipment was considered "durable medical equipment" and was not covered by insurance. This never mattered because we had Medicaid for JT. We are now in TX and have changed insurance. We are unfamiliar with how this company works and we no longer have medicaid to back up the claims that get denied. I will tell you they won't pay a dime for JT's botox injections because it's considered cosmetic.
Anyway, we submitted claims to Aetna, our new provider for JT's new wheelchair, a new bath chair and a new posterior walker. The other day, I got the letter, you know that denial letter stating sorry we aren't going to help you so good luck finding the money to help your child. I opened it up, began reading... what?!?? What is this? Jake? What is this? Does this say what I think it says??
Jake began reading... Wait, what? wait...
The insurance APPROVED the claims! WHAT?!??!! Our insurance is paying for everything minus a few parts. Now, those few parts in reality could still be a few hundred to a few thousand dollars, but still! My head is spinning. This is a miracle and an enormous blessing!
As some of you know, I have been searching for a job. Preferably one I could do from home. Paying for JT's medical bills is killing us and we need more income. Every time I looked for a job my heart sank and I got sick to my stomach. I would pray. Every time, every single time, I heard God say "I've got this." I would sort of say ok and drop it. Trying my best to believe him, trust him, not take over. I continue to sell Pampered Chef and I am now becoming an online fitness coach. Two things I love to do and I can do from home. Whatever money comes in is great, but it's never going to be enough. Only God is enough, only He can provide, and He does! He provides our daily bread. I am learning that lesson more and more every day. God is quite literally providing our daily bread, and now with this insurance thing, I mean, wow!
God is awesome and once again, I am in awe!
Have a great day and join us in praising God for this awesome gift!
Anyway, we submitted claims to Aetna, our new provider for JT's new wheelchair, a new bath chair and a new posterior walker. The other day, I got the letter, you know that denial letter stating sorry we aren't going to help you so good luck finding the money to help your child. I opened it up, began reading... what?!?? What is this? Jake? What is this? Does this say what I think it says??
Jake began reading... Wait, what? wait...
The insurance APPROVED the claims! WHAT?!??!! Our insurance is paying for everything minus a few parts. Now, those few parts in reality could still be a few hundred to a few thousand dollars, but still! My head is spinning. This is a miracle and an enormous blessing!
As some of you know, I have been searching for a job. Preferably one I could do from home. Paying for JT's medical bills is killing us and we need more income. Every time I looked for a job my heart sank and I got sick to my stomach. I would pray. Every time, every single time, I heard God say "I've got this." I would sort of say ok and drop it. Trying my best to believe him, trust him, not take over. I continue to sell Pampered Chef and I am now becoming an online fitness coach. Two things I love to do and I can do from home. Whatever money comes in is great, but it's never going to be enough. Only God is enough, only He can provide, and He does! He provides our daily bread. I am learning that lesson more and more every day. God is quite literally providing our daily bread, and now with this insurance thing, I mean, wow!
God is awesome and once again, I am in awe!
Have a great day and join us in praising God for this awesome gift!
Monday, March 2, 2015
Sam
Sam, Sam is a young man who we met through Justin's physical therapist. Kathy, JT's therapist, kept telling me about Sam. She would tell me how well Sam is doing, how Sam is so much like JT. Sam has had the same struggles as JT and so on. Finally, one day, we met Sam. Sam is a bright and witty 14 year old. He uses crutches to walk, or a wheel chair to get around. The first time we met Sam he sat down with Justin to tell him to be strong, and never give up. Since our first meeting, we have bumped into Sam a few times at PT. Recently, we happened to walk in on one of his sessions, Sam was standing up working on his backhand! Yes, he was playing tennis! I wanted to cry. We all stood there and cheered for Sam. It was good therapy for Justin too, because as he watched Sam and cheered for him, Justin held his head up in midline. Sam is inspiring!
Last night we had the joy of having Sam and his family over for dinner. Sam has two little sisters who are full of energy. To say our house was a full house last night is an understatement! It was AWESOME! The kids were loud and had a great time. Sam's parents, Wade and Jennifer are also truly inspiring. They are so encouraging, wise, and full of insight. They push Sam in the same ways we push JT. Why? Because we have been gifted with smart, funny, kind boys. So, we push them, because they can be pushed. We talked about how sometimes we push them too far, we expect too much. In that, we are just parents doing our best, wanting so much for our boys. We too are flawed in so many ways. But, we don't give up on them and they don't give up either.
I am rambling, I know, but I just can't help it. I will end with this, at the end of the night Sam got on the floor and was crawling around playing with all the kids. JT was in his chair at a table. Sam came to me and asked if Justin could get on the floor so they could crawl around together. I said sure and went over to get JT out. Justin still cannot crawl but he can move himself around. Sam was on the floor telling JT to roll over, another task that is VERY difficult for Justin. Sam said "here, I will show you" The two of them worked together, laughed and then JT did it! He rolled over! Sam was so excited for him. Then out of no where, JT started crawling! I needed to help him a little but Justin did it, he did it all on his own. Then Sam said "Justin, when I see you on Friday, I want to see you roll." Then his mom said "make him a bet" Sam said "Justin, if you roll on Friday, I will spend the night at your house." I cracked up! His mom said "I meant something like a candy bar or something like that."
Today is a new day with new strides and challenges. Today JT woke up, we are trying some new breakfast ideas (thanks to Wade and Jennifer for the great ideas) for JT so he can eat more calories, an enormous challenge for kids with CP. After breakfast I told JT it was time to get some work done. Justin asked if he could practice rolling so he could roll for Sam on Friday. So, I put him down, he asked for my help and I told him he had to figure it out. Then, off he went. He rolled over about 5 or 6 times. I know it might now sound like much, but for Justin this is incredible and incredibly exhausting. He was so proud of himself and I am so proud of him.
Being in Texas has been a challenge for so many reasons. But then, I look at Sam and his awesome family and I am so thankful we are here. We have known few people with children with disabilities like JT. Those we do know, the children are Justin's age and not as physically disabled. So please make no mistake, meeting Sam and his family is a true gift from God. They have so much to share and we are so thankful that they are willing to share with us.
I can only hope and pray that JT and our family can help inspire and guide a family in the future. We are truly blessed. (I think it's the first time I am thankful, truly thankful we are here.)
Last night we had the joy of having Sam and his family over for dinner. Sam has two little sisters who are full of energy. To say our house was a full house last night is an understatement! It was AWESOME! The kids were loud and had a great time. Sam's parents, Wade and Jennifer are also truly inspiring. They are so encouraging, wise, and full of insight. They push Sam in the same ways we push JT. Why? Because we have been gifted with smart, funny, kind boys. So, we push them, because they can be pushed. We talked about how sometimes we push them too far, we expect too much. In that, we are just parents doing our best, wanting so much for our boys. We too are flawed in so many ways. But, we don't give up on them and they don't give up either.
I am rambling, I know, but I just can't help it. I will end with this, at the end of the night Sam got on the floor and was crawling around playing with all the kids. JT was in his chair at a table. Sam came to me and asked if Justin could get on the floor so they could crawl around together. I said sure and went over to get JT out. Justin still cannot crawl but he can move himself around. Sam was on the floor telling JT to roll over, another task that is VERY difficult for Justin. Sam said "here, I will show you" The two of them worked together, laughed and then JT did it! He rolled over! Sam was so excited for him. Then out of no where, JT started crawling! I needed to help him a little but Justin did it, he did it all on his own. Then Sam said "Justin, when I see you on Friday, I want to see you roll." Then his mom said "make him a bet" Sam said "Justin, if you roll on Friday, I will spend the night at your house." I cracked up! His mom said "I meant something like a candy bar or something like that."
Today is a new day with new strides and challenges. Today JT woke up, we are trying some new breakfast ideas (thanks to Wade and Jennifer for the great ideas) for JT so he can eat more calories, an enormous challenge for kids with CP. After breakfast I told JT it was time to get some work done. Justin asked if he could practice rolling so he could roll for Sam on Friday. So, I put him down, he asked for my help and I told him he had to figure it out. Then, off he went. He rolled over about 5 or 6 times. I know it might now sound like much, but for Justin this is incredible and incredibly exhausting. He was so proud of himself and I am so proud of him.
Being in Texas has been a challenge for so many reasons. But then, I look at Sam and his awesome family and I am so thankful we are here. We have known few people with children with disabilities like JT. Those we do know, the children are Justin's age and not as physically disabled. So please make no mistake, meeting Sam and his family is a true gift from God. They have so much to share and we are so thankful that they are willing to share with us.
I can only hope and pray that JT and our family can help inspire and guide a family in the future. We are truly blessed. (I think it's the first time I am thankful, truly thankful we are here.)
Tuesday, January 20, 2015
How did we become so flawed?
I just had a very nice meeting with one of the organizations here in TX who is actually trying to help us. They are helping us find and apply for other grants, funds, and so on. In talking with our case worker I became so sad and frustrated. Not with her, but with our society. America was founded on God, like it or not. Our founding fathers had a faith in God and our country was based on that faith. How have we as a nation strayed so far from God? In speaking with our case worker, she mentioned how hard it is for the case workers to watch families like ours be denied every kind of service because Jake makes too much money. A family whose child needs the equipment and help. She mentioned how hard it was to watch families who have children with minor disabilities qualify quickly for government assistance while those of us who have to pay hundreds of thousands of dollars a year are punished because my husband works hard and has a good job. She then told me that she knows of several families who separate, legally separate just so they can qualify! I was stunned. The divorce rate for families who have a child with special needs is somewhere in the 80th percentile! Why is the government pushing families to divorce? Why are they pushing me to leave my family, my husband for a minimum of 30 days, to place my child in a nursing home, stay with him and not see my family for 30 days? Why isn't the government rewarding families who fight to stay together. Families who aren't lying and saying they can't care for their child to get ahead. Families who's needs are greater! I am in awe. I am sad, I am even a little bit angry. I am also grateful to all who have contributed to our go fund me account. These contributions are allowing us to by JT's neurological medication, some of his equipment and or procedures. But why isn't the government doing more to help.
I guess that is my soap box for the day. Feeling thankful and hopeful for the help we are receiving, praying for more to come. JT's needs are great and they are great financially. The Lord will provide! I believe that. Our government may not, but the Lord will!
I guess that is my soap box for the day. Feeling thankful and hopeful for the help we are receiving, praying for more to come. JT's needs are great and they are great financially. The Lord will provide! I believe that. Our government may not, but the Lord will!
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