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 truth....to 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,
Christy  

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, 
Christy 

*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!!!

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,
Christy