Marie and I held for ourselves the privilege of writing out and sharing Josiah's
Life Story at his memorial. Despite the emotions and busy-ness of the time, putting our thoughts to paper wasn't as hard as I thought it would be, and getting up to share seemed at times even easier. I suppose it was because the last 2 1/2 years brought so many opportunities to share about our son, that doing so again on such a grand scale seemed so very natural.
I have posted the full transcript of Josiah's
Life Story below as it was read at his memorial. It's long, but considering how much as been said and written about our precious boy I suppose that it could have been much longer.
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INTRO - Andrew: Josiah’s story isn’t about medical facts or beating the odds. It is about a son who was supported by the Lord and left a significant impact on everyone he met. Our words, emotions, and stories we share here today is not the complete testament of our son’s life because his story is etched on all of our hearts. It is for this reason, though we’re standing up here today, that Josiah’s life story will only really be heard later this evening when others get to share how knowing Josiah changed their lives. As one who has journalled his life since the beginning, this is only a small and incomplete account of parents who love God and loved the son He gave them through and inspite of the challenges. The legacy and impact he leaves behind is much like the trees he so adored: it will grow, spread, and multiply as his story continues to shape our own.
Marie: Our son, Josiah Haak. Ohhh, how we miss him.
Being Pregnant was such a Joy. Josiah was such a monkey inside my tummy. He constantly let me know he was there by going on carnival rides almost every hour. The umbilical cord was a complete spiral when it came out. His Favorite time of day was, of course as all us women know, when we are trying to sleep. However I was able to sleep through it somehow.
I continued life exactly the way it was. I was still active, did a triathalon, tought aquafit, swimming lessons, and supervised 32 staff. This was how I thought life was always going to be. I would take my child to all of these things after he turned 1.
Marie: When Josiah decided it was time to see this world we were completely caught off guard. I was only 35 weeks along.
It was a Thursday night and I had done my last day on the pool deck because it was that day I realized I was useless. We finished Junior youth and I tried to sleep. I thought it was bad cramps but Josiah knew otherwise.
Present at the birth were, Andrew, Kelly and Alex Shaw, Dr Cindy Shaw and a slew of professionals I did not know.
Josiah was born 1616 on the 16th of February. Just like the meaning of Josiah’s name he was immediate supported By God. I thought originally that he was going to be a girl because I heard distinctly that the name was to be Isabella when I was first pregnant. But I soon realized that it was the meaning of Isabella that God wanted for us to know. He was to be consecrated to God.
Andrew: One of the things that was evident right from the beginning were the signs of God at work. They were more than just coincidence strung together over the last 2 ½ years, but vivid expressions of God’s purpose and provision despite the challenging and chaotic journey it became. We had settled on Josiah’s name just five days before. It was pretty evident within minutes that we’d be leaning on God’s promises we found in Josiah’s name. While Marie was still a loopy from her first drug experience, we were dealing with the sober reality that Josiah may only have minutes to live. Josiah came into the world not breathing, but there were other alarming indicators that went beyond a boy trying to his catch his breath. Within hours he was intubated and flown to BCCH and thus began a long and difficult journey as we lived as a family for 15 months in the hospital.
Marie: The Lord started to support us through family and friends which I just realized as I was writing this that the name of Josiah was to apply to our family not just to him. Josiah was such a joy to us. We did not care how long the time would be we wanted to love him whole heartedly. He showed so much character during his frist few months. Josiah Endured 14 intubations fighting with nurses and respiratory therapists to cause some of them. This was only in the first 2 and an half months of his life. He had Eye exams, NG tubes, blood work every day, and a loud bright noisy room. He Chose to keep fighting and ne that God had more for him even at that young age. His eyes were full of life. He was finally Trached on April 30th and G-tubed a week later.
Andrew: One of the most lasting impressions of our time in the NICU was the fear of going to sleep. There were many nights we were woken with the news that Josiah almost died because he self-extubated. The NICU tested our faith and our family, and it established the foundation upon which the rest of our journey would continue.
Marie: Josiah soon started awful spells where he would not being able to breath. He would turn blue and black and we would just have to wait until he passed out. Then he was moved to the ICU so that they could take better care of him. It was a strange beginning of normal family life. We had our nurses and Doctors RT’s and bed mates. He became friends with children who came and went. His life was one that touched people who came in and went home with love and life. It was also one that gave hope to families who were just beginning there long journeys in hospital life. The accomplishments that he started to make were amazing and this also was a sign of Gods working miracles in Josiah’s life.
Andrew: Early in the NICU we were given the option of palliative care. On paper, Josiah had almost zero chance of survival let alone quality of life. If he was to make it beyond infancy, his best hope was to be a vegetable in a wheelchair. As parents, this was difficult to face but we decided that we do everything we could to give our son a chance and leave the rest up to God. Nevermind all the weird odds ‘n ends that challenged him, his brain alone was so highly underdeveloped that his doctor was shocked when he saw Josiah wiggle a finger. He wasn’t supposed to be able to do that, and he continued to amaze the staff in his own special way.
Marie: When Josiah passed his swallowing study it was so amazing. I was running and jumping down the hall to Dr Bob and he was a little scared. But I will never forget his response. How did they intubate him anyway? Josiahs Air way was so abnormal that Dr. Bob recognized that is was a miracle that they even could. Especially without leaving any scar tissue, which could have taken Josiahs life on its own. Wow a miracle.
Marie: Josiah survived severe seizures, aspiration pneumonia, and some of the worst blue spells they had ever seen. He was a fighter and God had so much purpose for his life. He had cronic ear infections and we would not know that he had one until we saw it, there were goobers in his ear or he had seizures because of the pain. He would just deal with it and his body would complain before he did. There was only one time that we needed to take extra action for extreme irritation. Wow!!! On top of that Josiah had two drug overdoses and God took care of him in both, when both should have been fatal.
Marie: When we decided that there was no more the hospital could do that we could not do at home we started making plans. The community had a hard time thinking that it was safe but we finally got the go ahead. We had 6 respite set up at the time and the nurses came later.
Marie: Being home was so fun, Josiah and I did everything together. He had a urge in his eyes that he wanted to enjoy life and so he did. Ya know? He has never woken up grumpy. He was always so excited to see you when he woke up. Even if it was 3 or 4 in the morning. He was just glad to be awake and with whoever was there. He had such a way of making each person know that he cared about them. I truly believe that he had a unique relationship with God and understood what it meant to love like Christ. That is what he would do with his eyes and his touch. This was his Job and he did it so well.
Marie: I was such a blessed mom, Josiah liked to cuddle and boy did we cuddle. He wanted to be independent and play by himself but he certainly wanted to be cuddled. Oh how Ioved it. With all the people that loved my son I had to let him go alot. It was hard as a mom to have to share my son so much. I really struggled at the beginning when I got home. I wanted him all to myself. Then I remember when I heard that I need to let Josiah go and do his job. He was not mine alone but Gods and he needed to be released to do what was planned for his life. He was unique in Gods design. He was a community child right from the beginning. The love that was given to him was astounding.
Andrew: Our home was a different home: medical bits like wrappers and instill ends littered the place; expensive equipment was found in every corner; our house beeped and whooshed and lit up just like an ICU hospital. But Josiah grew, excelled, and succeeded in our home. Playing with his go-to toys; laughing with his favourite stories; drinking his bottles and then taking the next step in eating baby food everyday; he got bigger and stronger, and he became confident with his body and learned how to balance, pull, and push. He understood sign language, recognized faces despite not seeing them for months, and loved it when family would talk to him on the phone.
Andrew: Josiah seizures got under controlled and he went down from 5 meds to 2. He was no longer dependant on diuretics to combat his water retention and went from needing 4 meds to needing none at all. He even got off his ventilator for the whole day, only needing it for his sleeps. It was ALL PROGRESS, sometimes fast sometimes slow but always forward and we were so blessed. He was the most content child I have ever seen, warm to everyone he met, never gave up on trying something he was determined to do, and always quick to forgive.
Marie: When Josiah and I would walk together we would always meet someone new at the park, zoo or mall. His being would just cause children and adults alike to walk up to us. We did not even have to look for them. He drew people to him without doing a thing. This allowed for his story and the proclamation of the glory of God to be shared through his life. He was a preacher left right and centre. It runs in the family ya know. We loved talking about our son. God told me in the NICU that Josiah was going to be a missionary in Africa and a day later the red spot on our blog map showed a spot in Africa that had found his story.
Marie: I was so proud of who he was. I prayed every night a thank you for who he was. He did not have to do anything, he just had to be free to do the will of God in his life and I needed to let that happen. That is what I hope we realize about our children is who they are is good. Not what they do or how they do things but for who they are. They are perfectly and wonderfully made no matter what problems they have or defects they have.I remember always saying to Josiah all the time. You are so cute, can I keep you forever.
I do not have him for a period of time and it hurts more than words can describe. This is the first time he has done something without me and I really hate it. But I know that God is good and I need to hold onto that. I do not want to be bitter and only God can prevent this in me.
When Josiah greets me in heaven I hope that he has all his outward beauties. His hump, big head, squished nose, short arms, rolls, moles, ears, jo haak and 6 toes. He was [erfectly and wonderfully made and God does not make mistakes. I believe that he will just not have limitations in heaven because what held him back on earth will be no longer. I look forward to our next big cuddle.
CLOSING - Andrew: The absence we feel today is as large as the impression he has made on hearts. And for that reason we ache and are heartbroken. Where there was once beeps of alarms and whooshes of breathing, there is only silence; where there was once a beautiful sleeping child on the screen of our monitor, there is now an empty bed. In a house that jingled and clanged with toys moving IB a mobile, there are only memories of a playful son; in a home where smiles filled every inch of his face and laughter wiggled through every part of his body, there is the sober reminder that our bodies fade and fail but our souls and legacy will live on.
Andrew: Every night when Josiah was in bed I would kiss him goodnight and say this same thing: Josiah I love you, Josiah I’m proud of you, Josiah I’m so glad you’re my son. A father has never been more proud of a son. He was perfect in every way for his limitations and challenges made him who he was. He was perfect because this is how God choose to make him. He was never a mistake, but a gift and a reminder that God is God: provider, healer, sustainer, and keeper of life. We love our son and miss him very very much.
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Thanks for your continued prayers.
- Andrew & Marie
Labels: Josiah Andrew Haak
