Friday, September 29, 2017

Trusting God Together

Olivia and I had the opportunity to attend the wedding of some dear friends of ours two weekends ago. As I sat and listened to this young couple say their vows, I couldn't help but reminisce about the day that Jeremy and I made our covenant before God. My Daddy often says that he loves my Mama more today than the day he married her. I can say the same after seventeen years of marriage to Jeremy. The mountaintop moments have been amazing. The births and adoption of our children stand out as the most impactful of these. But, after all of these years, it's the valleys that have intertwined us together so tightly that I have no doubt we will be together until death. 

Those valleys have been excruciating, but God has graced us by His never failing presence and by giving us each other. At my lowest of lows when fear and guilt and sorrow have taken my very breath away, Jeremy has always been there. His loving honesty has been an instrument of grace God has used to snap me out of deepest despair time and again. And when he has felt lost in the sufficating darkness God has called Him to face, I have been his compass to help guide him back to the path. 

Our love is something that I never want to take for granted. Statistics vary, but many cite the divorce rate for parents of special needs children to be as high as 80%. And the risk of divorce is even greater when a couple has more than one special needs child. Statistics like this don't surprise me. It's the relentlessness of the disorder that I believe is most taxing. It hijacks all normalcy. Jeremy and I would both tell you that the endurance of our marriage has been totally due to the grace of God. We do things wrong more often than right. I'm sharing all of this primarily as an opportunity to praise the Lord for His mercy in our lives, but I also want to give hope to other couples facing the trials of this life.

When we TRUST Jesus, HE will never leave us or forsake us. He is in control of every aspect of our lives. His sovereign plan is something that we need to grasp hold of. Jeremy often paraphrases his friend Thad saying that "we have tied the knot in the end of our faith rope and we are holding on." You may have moments in this life where you feel forsaken and alone, BUT GOD! He is with you, and you can rest in the fact that He is in complete control of the storm. And the trials that HE has called us to face bring Him glory and are for our eternal good. 

Seventeen years ago, we had no clue where the years would take us. Today, we have no clue what the future holds for us. But we are confident of two things: God is worthy of our trust, and, if God wills, we will face the future together.

Because of His Grace,

-The wall padding for the therapy room is supposed to be delivered sometime in the next week. We are so excited to see the final pieces of this project falling into place. Thank you to all who have given to bring us so far! Below is a video of Josiah enjoying his therapy room. What a blessing!

Friday, September 1, 2017

The Verroi House is Hoppin!

Today marks three weeks sense my last post. Due to several factors, we decided to re-adjust our support staffing schedule, and I have found it hard to carve out the same block of time that I used to for blogging. But I'm determined to figure out a new rhythm. It's important to me to continue updating all those who have supported us. And I have found sharing parts of our life very cathartic. I pray that these posts are more than just Verroi family updates. I pray they serve to educate, encourage, and glorify our Heavenly Father.

So much has happened in the past few weeks.

Jack's lowest weight was 2 lbs. 9 oz.
Our oldest son Jack turned 14. That means we have two 14 year olds for the next two and a half months. Olivia and Jack were supposed to be a year and two weeks apart, but Jack was born ten weeks early. And so we have Irish Twins. When I think back to Jack's birth, I can't help but marvel at the grace of God in our lives. And I can see clearly how God used that time in our lives to teach us lessons that provide comfort and stability still today. Of all of our children, Jack went through the most at birth. He spent six weeks at Duke and had heart surgery, a brain bleed, collapsed lungs, chest tubes, and a myriad of other smaller complications common to being born premature. We are still amazed that God graciously allowed Jack to grow and develop with no lasting effects. The only remaining signs that this ever happened are the few scars on his body. To God be the glory! 

Right on the heels of Jack's birthday, our ACS kids returned to school. What a joy it has been for Olivia, Jack, and Judah to attend my alma mater and the school where my parents worked and invested so much of their lives. It is hard for us to believe that our little girl is now in high school! It seems like just yesterday she was born. We are praying that this year goes great for our 9th, 8th, and 3rd graders! 

Olivia, Jack, and Judah first day of school at ACS 2017!

Judah first day of school 2017!
Jalen moved to homeschooling with my Mom last year. It was a decision that we thought and prayed about a lot, and we consulted several of his doctors, therapists, and teachers before making the move. I am SO thankful that we did this! My Mama has done some amazing work with that boy! She strikes a perfect balance between teaching him "book knowledge" and practical daily living skills, socialization, and appropriate behaviors. I CANNOT SING MEEMAW'S PRAISES ENOUGH!  

Jalen first day of school 2017!

This brings me to Josiah. I can not begin to tell you how tremendously God has guided our steps in terms of Josiah's schooling. When he was four, he attended ACS for one year with his siblings. That year was such a gift to me from Jesus. I had always dreamed of all of my children together at Alamance. It was a challenging year. One that fulfilled my dream, but also one that showed us that our boy's needs were too severe to continue keeping him there. You know the whole "square peg round hole" analogy. It wasn't fair to the peg or the hole. So we left ACS grateful that they had allowed us to try. 

I won't take the time to tell you all the ends and outs of what happened after ACS, but, suffice it to say, God went before us, and, in HIS grace, we were introduced to Miss Beth Courtney. She has been Josiah's teacher for the past three years. She not only shares our faith in Jesus, but she is one the absolute most selfless and devoted teachers I have ever met. Miss Beth and Josiah have had a special bond from the beginning. She has been Josiah's teacher, but she has also been a friend, councilor, and prayer warrior. As I told her, she has been a salve to my often aching soul and a compass leading my gaze back to my Savior. She has helped me see the beauty in our boy where others could only see the different. Josiah had one more year that he could stay in Miss Beth's class before being moved to a middle school environment. Even though we very much wanted him to spend that last year with Miss Beth, we have made the very difficult decision to move him to homeschooling this year. Josiah is doing so well overall in his new environment. He has struggled with a lot of illness while attending school, and, for this and several other personal reasons, we have made the decision to keep our boy home. I am thankful that our friendship with Miss Beth will go on. I could not imagine not having her in our corner and in our lives. BUT we will so miss seeing her every day! She is doing great things, and we are thrilled for all of the children and families she has impacted during her many years of service to the special needs community of Alamance County.  

I have shared a little update on all the kids in this post except for our youngest Jason. This "baby" has had a HUGE week! When the pool was put into our back yard, our biggest concern was that we had a three year old who didn't know how to swim. Our lives revolve around maintaining a high level of vigilance while caring for our children, but we were very concerned about the possibility of someone making a mistake that could lead to Jason drowning. Our number one priority has been having Jason in the pool almost every day since we started swimming at the beginning of June. Three months of swimming and working with him has paid off! Our boy is swimming!!! We are so proud of him! And, if swimming wasn't enough, HE ALSO POTTY TRAINED OVER NIGHT THIS PAST WEEK! Three may seem a little late for potty training, but we learned early on that waiting for our kids to turn three made potty training so much easier on our family! It's been an exciting and amazing week to say the least! 

Josiah has had the typical ups and downs over the past three weeks, but he is doing much better than when I wrote last. Thank you all for your continued prayers! 

As far as the construction project, we are proud to report that the drains are working perfectly! There has been NO water build up or flooding!! Our padding has been ordered and we are just waiting for its arrival. I am trying not to stretch my busy brother too thin so we are waiting to install the Aquashield until the padding arrives. This way we can tackle both jobs on the same day hopefully. We will of course keep you all posted!

We are grateful for your continued love and support! We serve a GREAT GOD who deserves all of our honor and praise!

Because of His grace,

Riding the golf cart and having fun with Instagram! :)

Friday, August 11, 2017

Clocking Twenty-Fours

Clocking twenty-fours. It's a term I have heard prisoners use in reference to what it's like being locked up. They survive the stresses of prison by focusing on enduring 24 hours at a time. Our home isn't a prison, but there are days where we endure the stresses of this disorder by focusing on clocking twenty-fours.

This has been a week of head banging, smacking, whaling, stomping, and diaper dust at our home. Perhaps it has been the weather. The barometric pressure changes that come with rain typically cause Josiah a tremendous amount of distress. Or perhaps it was the full moon. Ask any special needs parent, there is a LONG history of the full moon making life unbearable for our kids. We checked his ears. They seem fine. I don't think it's his teeth, but its super hard to get a good look in there without risking the loss of a finger or two. Perhaps its a GERD flair up again, but he isn't showing the typical signs if it is that. We guess and we guess. I go to sleep thinking about it. I dream about it. I wake up thinking about it. Jeremy and I have conversation after conversation trying to brain storm and figure out what is causing our boy to be so miserable. 

A joyful moment on the golf cart with Meemaw
From the moment he wakes, distress. He stomps out his frustrations again and again. And, when one footed stomping doesn't work, he starts to jump high into the air with both knees locked and heels pounding into the floor as he lands. Shaking the entire house. Over and over. He wants to ride in the van. After all, its become his sanctuary especially at times like these. We would be riding non-stop if it weren't for the golf cart, therapy room, and therapy pool. We are thankful for the brief moments of joy these things have brought him this week. But they have been brief. The upset always returns. There are some weeks where we just can't figure out what is going wrong.

Riding in the van doesn't always work. Sometimes his torment is too great for this to even help. I got a call early this week from our support staff worker. She had Josiah at Wendy's trying to get him some french fries before taking him on a ride. He began to have a violent meltdown that involved him kicking the windshield and breaking it. I rushed to Wendy's to pick him up. Thankfully no one was seriously hurt.

Diaper Dust all over the bed
Josiah has taken out much of his frustration on his diapers this week. He likes to pull the outside ruffle off of his diaper to use as a form of self stimulation. He twirls it in front of his face, taps it on the edge of his chin, and sucks on the end. This week, he hasn't been content to just rip the edging off. With one hand, he reaches between his legs and grabs hold of the diaper. He rips the outer shell off the diaper in one dramatic move that sends a cloud of powdery diaper dust flying everywhere. When dry, the contents are a nuisance. When wet, they are like dumping large handfuls of urine soaked cotton that has the smell of pee and the feel of slippery glycerin. Gross to say the least. We have opted to let Josiah roam nude for short segments of time in an attempt to conserve diapers. 

Our boy is bruised all over. Not the worst its ever been. But more bruising than we want to see. We have enacted our emergency protocols for the next 12 days. We will have two on one staffing for Josiah for several hours each day, and we have emergency meds that we can administer when things get very bad. We have used the medicine twice this week. It gives Josiah about three hours of calm, but, when it wears off, Josiah is left weepy and distressed. We try not to use it often for this reason. 

Hilltops and Valleys. We all experience them both. Our hilltop moments may not look like yours. Neither may our valleys. But one thing is the same. Both are designed by our loving, all knowing, all powerful, gracious, and merciful Heavenly Father for our eternal good and for His supreme glory.

Please continue to pray for our boy. Thank you to the many who care for and support Josiah!

Because of His grace, 

*We are still needing to raise $500 to place the order for our padding. The drainage issues proved to be more in depth than initially thought. If you would like to help, you can give by following this link: you to everyone who has given so generously thus far! We are forever grateful, and you have made such a tangible difference in all of our lives.   

Friday, August 4, 2017

Drainage Issues Be Gone

It wasn't my plan to have another two weeks between posts, but last Friday our internet went down. We got it fixed the next day, but things have been so busy around here since then that I am just now finding the time to sit down and update everyone. 

Quality Landscapes started addressing our drainage issues this past Friday, and they finished everything on Wednesday. They did a wonderful job, and we are so exceptionally thankful that our drainage issues are a thing of the past! I'm sharing several pictures below so that you can see some of extensive work that was done. The AquaShield, that will go over the pool for year round swimming, can be installed in the next few weeks once the sod has had an opportunity to take root.

I mentioned this week on Facebook that Josiah has been struggling the past couple of weeks. It's so hard to know for sure what has been going on, but he has been in flux. He flits from one activity to another stomping to convey his frustration. He wants to ride in the van all the time. BUT, because we now have the golf cart, therapy pool, and therapy room, we have several activities that we can redirect him to. In the past, we would have been riding non stop. Now we are able to stretch out the time in between rides a lot longer. The therapy room has proven to be exceptionally helpful during meltdowns. We are able to bring him into the silent room and keep him a lot safer until he is able to calm. Today, he seems to be showing signs of improvement. Lots of smiles!

The final piece of our project is to order and install the padding in the therapy room. We had all the funds needed for this, but the drainage issues have depleted that amount some. I am waiting for the final invoices, but I think we need about $500 to fully fund the padding. Our church has graciously agreed to keep the Josiah Verroi Fund open for donations to help with his care. If you would like to donate to help us get the funds needed for the padding, you can do so by clicking this link: Josiah came close to putting his head through one of the therapy room walls last week. Thankfully he wasn't injured and the wall just sustained a circular dint from the back of his head. It was a good reminder to us of how greatly this padding is needed. Thank you to everyone who has given to help us do this! 

Jeremy and I will celebrate our 17th wedding anniversary tomorrow. I have thought a lot about the past 17 years. I am so thankful that God graciously brought the two of us together. We would both tell you that we were made for each other. There isn't a day that goes by where we are not reminded of how God has used our individual strengths and weaknesses to compliment each other perfectly. Our relationship is grounded in our trust in Jesus. And it is that solid foundation that has kept us together all these years and through every trail we have faced together. I can't imagine "doing" life with anyone else. 

Our Heavenly Father has been so very merciful to us! 

Because of His grace,

Saturday, July 22, 2017

A "Packed" Post

Josiah looking at Faces! <3
It has been a little over a month since Josiah started enjoying his therapy room and therapy pool. The benefits have been numerous. His appetite and sleep are both improved. His self injury and aggression are way less frequent. And it is such a blessing to see him enjoying swimming again. Jeremy and I are seeing a significant decrease in the duration of his meltdowns due to having an isolated, padded, and quiet space to help calm him. It has made a tremendous improvement in his overall quality of life. 

So much has happened the past few weeks. I haven't had the time to share several of these updates until now. :)

Jalen. That kid! MANY times each day, we travel from the highs of being amazed by his intelligence and quirkiness to the lows of wanting to "strangle" him for making an unfathomable mess or destroying our property. A few weeks ago, he flushed an entire role of toilet paper. This is the third time this has happened and it has clogged our drains each time. Well.....the big difference this last time is that the therapy room and bathroom are now part of our home. Because this room is now the lowest level of our home, the sewage backed up into the therapy bathroom. This bathroom is wheelchair accessible so the sewage water ran out of the shower and under the therapy room floor. Jeremy noticed a small river of water flowing outside. It was coming from under the therapy room wall!!! When I went to investigate, I found the therapy room floor soaked. THANKFULLY the padding that was laid in this room can be easily removed and cleaned. Our friend and top notch plumber Jerry Hayes came to the rescue and unclogged the drain AGAIN! He also installed some kind of device that will prevent the sewage from backing up into the therapy room. If you ever come over to visit and you have to use the restroom, be sure to ask for toilet paper before entering. It's now all under lock and key! Above you will see a picture of Jalen's destruction and below a video of his tribute to Mr. Rogers. See....highs and lows. :)

My brother Jonathan and sister-in-law Alisha invited us out to their lake house a few weeks ago. We were all nervous to see how Josiah would handle being there, but he did GREAT! He loved swimming in the lake with his Papa, and he particularly enjoyed riding on the boat. All of the kids had a blast! One of my favorite parts was watching the kids ride the tube! Even Jalen took a turn! :) It was a great day! 

Uncle Jon making Jalen fly high! 

Judah's turn!

Josiah swimming with his Papa and cousin Jessie. 

Jalen loved the lake!

Our son Jason and nephew Joel. 
Jalen and Jack riding the tube.

Getting ready for the Auction! :)
Jeremy recently used several of his vacation days. Since traveling is very difficult for us, we were home all week. It was so nice having the pool for all of us to enjoy together. I can't begin to convey how wonderful it was to not feel "stuck" at home, because we had something to do that everyone LOVES! Jeremy hosted one of his traditional "survivor food auctions" one evening for the kids. It is a spin off from the show Survivor where the contestants bid on various items that they would like to eat. Some items are visible to the bidders and others are hidden. It's a lot of fun and the kids enjoy snacking on all their "purchases" while they watch a movie with their Dad in the evening. I am so thankful for Jeremy's job and his willingness to work so hard, but I found myself very sad at the end of the week when he had to return to work. Life is so much easier when Daddy is there to help. Especially for Josiah....

Jalen knocked his head on the pool and got a goose egg. This was his bandage creation. :)
Jason got a horrible case of swimmers ear. But he found a way to "just keep swimming..." 

This week all of our boys had there "yearly" physical. Mom my shame, I don't take them every year. Once they past the immunization stage, I tend to take them just when they are sick. This isn't the best, but I'm thankful that our awesome pediatrician Dr. Mertz is so gracious and understanding. I could probably write a book about all the ways he has helped us and cared for our kiddos over the past fourteen years of being their pediatrician. His grace and humility and loving concern are all things that our family gives thanks for often. Also, a huge shout out to Nurse MoRhonda for fielding my calls, doing the leg work to manage our large family's needs, and for being a shoulder for this Mama to often cry on. They made the visit for Josiah go flawlessly and fast. We are so very grateful for Burlington Pediatrics! I hope you enjoy these picture of our two youngest: Judah and Jason. The gowns were the funniest part of the visit! <3

As far as the project goes, we are waiting to install the Aquashield cover over the pool until after the drainage issues are addressed in the yard. The drain installation and landscaping should be going in soon. We cannot wait to see everything complete!

I realize I have packed a lot into this post, but they were things I have really been wanting to share. Thank you to those who are contiuning to follow our journey and who lift us up in prayer regularly. We trust God to meet the needs of each new day. He has never failed do so....

Because of His grace,

Saturday, July 8, 2017

Saturday Celebration

Check out that TAN!!!
Our boy turns eleven today! I wish the day wasn't as hard as it is proving to be for Josiah. I'm not sure what is causing him pain, but the self injury and aggression we have experienced thus far clearly indicate discomfort. Our support staff worker had Josiah on a van ride earlier. She called saying that he was having a horrible meltdown so she pulled over on the side of the road until I could get in Jeremy's car and drive to meet her. Not the way we wanted this day to go. But Autism is no respecter of celebratory days. So we do what we always do......we try to help our boy best we can and hold on until this passes. 

We have MUCH to be thankful for this year! The therapy room and therapy pool are making a profound difference in Josiah's quality of life. And having the tools to help our boy is also greatly benefiting the rest of the family. There will always be days like today. Hard days. But the reality is that the hard days are not as hard as they once were. I can't think of a better gift for our boy! Greater safety and greater joy while being in his own home with his family. This isn't something we take for granted. We have been told many times by professionals specializing in this field that most kids as severe as Josiah are no longer living at home. We will devote our lives and everything we have towards that never being Josiah's reality.

But we aren't doing this alone. So many people gave to help provide for Josiah's needs. Each gift is enabling us to better care for our boy now and in the future. We can never say thank you enough! 

Eleven years ago, I gave birth to this precious boy who God would use to teach me and his Daddy untold lessons about His goodness and faithfulness. It has been a joy and privilege to care for him each and every day, and we pray God gives us many more years together. 

Because of HIS grace, 

*I didn't post a Friday Funding Update this week due to posting on Thursday and today. But we are so grateful to those who have given to help raise funds for the drainage issues we have been having. The drain installation and landscaping quote is $6,100 and the safety padding quote is $1,908.56. We also have one other small bill we are waiting on for construction that has already been completed. We think that all of the work and outstanding bills will cost a total of $8,500. We are praising the Lord that our current total in the account is $7,504.60. That means we are less than $1,000 away from having the funds needed to complete everything! Thank you again to those who have given! God is providing!!!

Thursday, July 6, 2017

Twelve Years....

July 6, 2005. 

He came six weeks early while they were on their traditional July 4th family beach trip. After a calm day on the boat, things quickly turned from peace to panic when her water broke and labor began. Ready or not, their first born boy was coming. She was transported alone to a hospital equipped to care for preemies where she labored with no familiar support and with no pain medication until her precious baby entered this world. His Daddy rushed to join them, and the three were reunited. Grateful that, in spite of things going so differently than they planned, Mama and baby were healthy and safe. 

Tommy and Stefanie settled into life as first time parents. Naps and night time sleep, feeding schedules, and dirty diapers were all recorded in a small three ring binder that spoke to how important they viewed this new and blessed calling. As Stefanie's maternity leave drew to an end, she and I began planning what Joseph's days would look like once she returned to work. And I felt privileged that my life long friend would entrust her most precious gift into my care.

Our children Olivia and Jack were three and two at the time. They enjoyed having a baby in the house to love and "help" care for. And I so loved having my arms filled with this precious boy. 

None of us knew what God had planned. That He had chosen for Joseph to live such a short while on this earth. That on October 18, 2005, at just one week shy of four months old, He would choose for Joseph to die from Sudden Infant Death Syndrome. That He would choose for him to die in my care. None of us could have prepared for the grief Tommy and Stefanie would have to face. The grief their family would have to face.

None of us could have known the lessons we would learn from loving and losing Joseph. None of us could have imagined the lives that would be forever changed, because God chose to use this little one. 

Twelve years later, there is still rarely a day that I don't think of Joseph in some way. This past week, he has consumed my thoughts.

Jeremy and I have a college friend who lives in Australia. We have maintained ties with Tamara via Facebook over the years. Nine months ago, Tamara found out she was expecting, and it was determined that the baby boy she was carrying had Down Syndrome. Because of our experience with being special needs parents and because of the knowledge we have gained from loving our nephew Joel who has Downs, we reached out often to try and encourage her. Tamara was strongly urged to have an abortion, but she stood her ground and started prepping for her little Hunter. As the pregnancy progressed, she and Hunter's dad Brett and her other three sons along with so many friends and family grew in excitement about Hunter's anticipated July 3rd birth. On June 28, 2017, Tamara gave birth to Hunter after finding out that he had suddenly passed away in her womb just days before his scheduled delivery. 

Our hearts have been so grieved for this family. Our prayer is that the same comfort that God gave Tommy and Stefanie will be the comfort that He uses to sustain Hunter's family. The Australian site "My Cause" is similar to the US "gofundme." An account has been set up on this site to cover Hunter's funeral expenses. The goal of $5,500 has been met, but I would love to see the family receive a lot more donations so that Brett and Tamara can perhaps take some time off of work to help process all they have endured. Tamara will most likely not receive her maternity stipend and there are a lot of medical bills that have yet to be paid due to Hunter having extra monitoring and testing due to his Downs. The family has some very significant financial needs that I am praying get covered. If you feel compelled to give, you can reach their page by clicking HERE. Thank you for considering giving!

We praise the Lord for the little ones like Joseph and Hunter that God uses to change and grow us all. I have said it before, but God used Joseph to prepare me for mothering Josiah and Jalen. As heartbroken as I am for all that these families are enduring, I know that God has a divine and good plan for each and every life He creates. 

Because of His grace,