It's time, it's time to let go of my fears of others knowing what is inside. Where my heart is and let you all know where this mama truly is at. Josiah Patrick Hoerter was born on May 21, 2012. He is so special to me, to us. Though he is a son I never gave birth to, I will never forget the day he was born. The day I was told "you can't have him because he needs to stay in Michigan." We fought for 11 months to bring him out of foster care and into our home and it took another 12 months to be granted the privilege to call him my son. Our little Josiah has always been special. Special because I didn't carry him for nine months but I still get to call him mine, special because I had to fight for him for so long to give him a forever home, special because he has two women on this earth that love him like a son-like a mommy should, special because he has so many that love him and beyond. On march 31, 2014 he officially was no longer an orphan, a foster child, he became MY SON. But that day didn't erase a family he once was apart of. His foster home from Michigan will forever be apart of his family. He has a foster dad, mom, siblings, grandmas, grandpas, aunts, and uncles. All from his foster family; all who love him dearly and all who pray for him often. Our little JoJo is special to many of us. When I brought him home I noticed something was wrong. Maybe cerabal palsy? or something else? I asked a good friend of mine who has a little girl with CP what she thought. She concurred something wasn't right. He was delayed in development, birth to three put him at a 3 month level across the board at 11 months old. I fought for the next 11 months with specialists after specialists that something wasn't right with my baby. The doctors said it was neglect and in-utero drug abuse. They kept saying, " reassured mom he is fine." Then came March 13, 2014. A day I will never forget. A day that changed my life, my family, and my children. We received a phone call from his neurologist, your son has MECP2 duplication syndrome. I thought ok. We can handle this, how do we treat him so he can live a normal life? Little did I know at the time that he would never live a normal life, have a shortened life expectancy, and die, a slow death, of starvation. MECP2 DS is of the devil. A wicked nasty disease that is killing my miracle boy.
Click here for more info on this dreaded disease that is taking my baby's life. From the moment we received this diagnosis his doctors have been more on top of his issues and rightly so; he is drifting fast. They no longer say "reassured mom he is fine" Now what I here on a daily basis is, "we are taking it one step at a time, we don't know what to do". Specialists that have years upon years of experience, are stumped with my son. they stumble upon their words and ask me for advice. My JoJo is very sick, chronically ill; fading quickly, and we have no idea what to expect next. We are taking it one step at a time in complete darkness. One truly doesn't understand what it means to walk by faith until all the lights have gone out. Our lights have gone out. We walk by faith with our miracle boy. We walk by faith handing him over to his surgeon. We take it by faith that he will be awake tomorrow. By faith we have made it thus far. This past year was hard. Not going to lie. On February 26, I rolled my van, totaling it. Our insurance didn't cover the cost of it. $8,000 later we got a newer junkier van that we can't wait to replace. We received Josiah's horrible diagnosis on March 13, 2014. June 10-July1 we were in Milwaukee children's hospital fighting for Josiah's life. July-September our home was ripped apart and $100,000 later, redone, because of a leaking roof and mold infestation. We we're homeless for 2 weeks. In October, Josiah's g tube failed and he needed a g/j tube. In November his g/j tube failed. On the day before thanksgiving Josiah experienced something I've never seen before. He laid limp on the floor, lethargic for an hour. I thought it was strange and maybe he was just tired until his body went white and he wasn't responding to me. I tapped on his check, he opened his eyes and was looking at me as if saying "mommy please help, please help me." I knew something wasn't right. For the next 2 months I was again fighting for his life. I kept begging his doctors for help. On Christmas Day, his limbs went ice cold, he had what looked like an abscess in his abdomen. I was scared. I prayed we would make it to the nearest children's hospital ER-50 mins away. I was losing him in the van, but praise The Lord we made it to the ER. He was severely dehydrated since his g/j tube was rejecting his feeds. He also had cellulitis around his g tube site. We stayed at the hospital for 3 days; received a PICC line and went home with iv fluids. He no longer would tolerate any feeds. He became lethargic and weak. On New Year's Eve we again were admitted into the pediatric floor and TPN and Lipids through his PICC line were started. Another holiday in the hospital. We went home 5 days later. On January 15, he went into surgery to get a primary j tube in hopes that he would start taking feeds this way. The surgeon came out and told us she had found numerous small bowel
Intussusceptions (Bowel obstructions) Yes, I was thrilled they found something that was fixable. Maybe he can start eating through his j-tube and get off that IV. 7 days later, now with a Hickman line, he still cannot tolerate, not only his feeds, but now his meds. He is on iv nutrition and iv meds. Before surgery, his liver was shutting down and they took him off the lipids. At nearly 3 years old, he weighs less than 20 lbs. My little boy, my baby is withering away to nothing. He isn't getting enough nutrition, fats, nor fluids. He isn't urinating well. He is weaker. He doesn't do the things he use to do. This is our reality. This is our life. We sit here and are watching our baby die before our eyes and what can we do? The only thing we can do...go to our only Lord and Savior Jesus Christ, DAILY, moment by moment.
"You will seek me and find me, when you seek me with all your heart." Jeremiah 29:13. We aren't in this alone, though at times I fee lonely, my Lord is carrying me through and giving me His strength. Because I am weak, I cannot do this alone!!! "
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." 2 Corinthians 12:9 God is good all the time. And in all things God is good. He promises good to those who love him. Romans 8:28
"And we know that for those who love God all things work together for good, for those who are called according to his purpose." I never understood that verse before, before today, before Josiah, I thought that verse was just written wrong. How can this be for my good?!? It most definitely is for my good, my family's good, and your good. God is using Josiah and his little life to minister to my heart, to my family, and to you. We are in the hospital on Christmas. Some think we had a terrible Christmas. I would have to disagree. It was by far the best Christmas I've ever had. The true meaning of Christmas was all around us that day. Yes. We were not at home or at the family gathering. However, we were together and our Lord was with us. He never leaves nor forsakes us. He spared my boy's life that day and I rejoice we have had another month with him. Christmas is about Jesus. The gift of life. He gave me that on Christmas for my son. But The Lord went on to teach me more. Last June on the night do the 20th, I begged my Lord to save little Josiah's life. He was in emergency surgery and I wasn't ready to lose him. I'm glad that was God's plan too. Because I was missing it back then. Missing the bigger picture. Josiah isn't here for me. He is here for a divine purpose and until that purpose is fulfilled we will have him here with us, MECP2 DS and all. Today, I find myself no longer begging my Lord to save his life, I'm begging Him to deliver my baby from his pain and suffering. My God is good and little JoJo's life is a blessing to us all. This journey has been for my good and God's glory. May he receive honor and glory for the little time we have left with our miracle boy. A mom of a chronically ill child wrote
this blog post and it describes my heart. As other moms are living daily life, organizing their days into charts, planning meals, cooking meals, cleaning their homes, successfully homeschooling their kiddos, and going of dates with their spouses; We are here trying to stay afloat, give Josiah the best we can, care for the other three kiddos, run to and from the hospital daily, be lucky to eat a piece of ham and cheese for dinner, and call it a good day if I read a book to the kids. Patrick and I are now running two businesses. One is called Your Network Security and that pays the bills, the second one is called private duty nursing, this one helps keep our son alive. I feel like I'm drowning in all this nursing stuff. Some days, I just don't see the benefit, then other days I feel myself breathing again. God is good all the time. I never thought I would experience such a life. Never thought I would have to fight so hard for my baby to stay alive. Never did I think that I would need to talk to a pediatric surgeon daily ( to the point that she is now texting me!) (very blessed to have a doctor that cares as much as she does.) I'm suppose to be texting friends for play dates not my sons surgeon on how are we going to keep him alive today! My life is different, my life is hard, and I am in awe of what The Lord has taught me. He has given me peace that surely does surpass all human understanding. A peace I cannot describe. The verse
"and the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus" Phil 4:7 is now alive in my heart and I wish all of you could experience such peace. Having this peace doesn't mean I do not struggle. I'm a Mama. I'm human. I'm a sinner. And I fail. I'm a Mama who is forced to watch her little boy, her baby, wither away and die a slow death of starvation. Like I said, I am human, it hurts. When all medical staff has no idea what to do next and you're the one calling the shots; it's scary. But that is my reality. I do not know when The Lord will take Josiah home but I know deep in my gut, the time is sooner than later. No parent ever wants to bury their own child, no parent ever wants to plan their own child's funeral. It is inevitable. We will have to and that time is approaching. I would like to believe its years down the road and I will do the happy dance if that becomes reality. My heart... I can't wait for Josiah to go to Jesus; to be pain free, no loner have tubes coming out all over, and have the ability to walk, talk, and eat. I like to imagine him in heaven running around Jesus, running in circles around his feet; giggling and laughing and singing his favorite songs. Maybe one day, my JoJo and I can walk the streets of heaven together holding hands and finally get to talk with words to one another. My God is good and. I believe he will deliver him from his pain and suffering. I love my JoJo and will continue to fight for him and give him the best life we can on this earth until Jesus calls him home. I'm ready when you are Lord. Please help my baby, please deliver him from this horrific disorder. The life we are in is not easy. But funny thing, the bible never promises easy, I want Jesus, not easy. We chose to adopt this little boy, we chose him, and Jesus chose him. Josiah has made my life more complete, he has brought me closer to my Lord and Savior. This life has brought me to my knees time and time again. But being at the foot of the cross is always the best place to be. My life and my marriage is better because of this "hard" life we are living. God is good all the time! My children are more compassionate and learning that life doesn't revolve around them at a much earlier age than others learn it. God has a plan for each one of our kiddos and I trust them into HIS hands. Please continue to pray for our family and may JoJo's life be a blessing and inspiration to everyone. Thank you Lord for this miracle boy and entrusting him to us.
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