This was sung to Josiah at his First Birthday (see: Sometimes Miracles Hide). It made us cry, his mother like a baby. Especially the part about riding a school bus. Because she didn’t think he’d ever… But God (how I love that saying). Josiah is taking a school bus Mon-Fri and he’s gone for nearly 6hrs a day. He plays on the computer that has an adaptive “mouse”; it’s a bar he pushes. He even uses the toilet and even has BMs on it! They have him choose what activity he wants to do. They will hold out a picture of, say, his tricycle or the wagon, or swing, and what ever one he lays his hand onto is the one he chose. He has been going to school since he was 3. Their summer break is only 4 weeks, because they don’t want the children to forget what they have achieved. He uses a walker, but if we go shopping or something like that, that’s too far for him. He’s nonverbal and that’s the hardest part.

Let’s start from the beginning: We found out there were problems through our “routine” ultrasound. He had many anomalies they could see. And some they couldn’t, but who cares?… They called for an immediate amino, later to find out, it was only to help them enforce an abortion. We had to have “specialists” instead of our family practitioner now. After realizing he was a T13, they insisted on an abortion: even though we had already told them, no matter what, we would never kill our child. They told us he would never survive a vaginal birth, so, obviously, we wanted a C-section. This dumbfounded the perinatologist and later he said, “My seven other associates and I agree that we cannot scar your uterus for a child like that.” Ironically, here he was insisting on “interrupting our pregnancy”, because he’s not ‘really a baby’ in the doctor’s eyes, yet he called him ‘a child’. Something one of our friends asked, “So, if you ‘interrupted’ your pregnancy, when would you resume it?”. Good question.

So there we were, into our 6th month, without a specialist, and now also without a hospital. But God… Supplied us with a strong believing specialist with his hands the size of a catcher’s mitt. The perfect job for catching babies. We had weekly monitoring done to see if Josiah was ever in distress. The Dr scheduled a C-section at our 39th week, because he didn’t want me to go into labor and cause any unnecessary strain on Josiah. He would be delivered at a hospital adjoined with a hospital specializing in children only. Prior to delivery, we had a 2hr consult with the Director of Neonatology. The first 15 minutes we shared why we wanted everything possible done to save our child. For the next hour and 45 minutes, he told us why we shouldn’t (which never made any sense to us). Therefore, we saw again, what we were to be up against even at a children’s hospital.

When Josiah came out crying, we were both sobbing (our family practitioner even got special permission to be in the delivery room to hold mom’s other hand). While our specialist was stitching mom up, tears still on her face, another neonatologist said, “If by chance you take this baby home, don’t bother calling 911 (emergency), just let him die.” How dare he!! Our child was going to a crib not a casket!

Josiah stayed in NICU for 9 days. His diagnosis is as follows: holoprosencephaly (the brain didn’t split into a right and left side), Dandy-Walker cyst (part of the base of the brain didn’t form, but a cyst did), coloboma (keyhole pupil that doesn’t retract so he’s sensitive to the light), cleft palate, cleft lip, skin tags (extra digits without bones), one on each hand, Dextro-Cardia (reversed heart) and on the right side, VSD (a hole in the heart), omphalocele (intestines were born in the umbilical cord), hypogonadism and a micropenis, rocker bottom feet, and last but not least, the cutest little 6th toe on his left foot. Now that’s from head to, literally, toe.

While in NICU, the Drs insisted on DNR (Do Not Resuscitate). We disagreed. We let each and every nurse know caring for him, that he is a gift, special and deserves to live. Josiah needed help, assistance, whatever you want to call it, numerous times. In between shifts, while dad came home one night, and mom was still home, a nurse called and said she thought she almost lost him. The doctors may think it’s “excessive”, but it’s a life. How dare they think our children are less worthy to live than anyone else’s. Had we agreed to DNR, Josiah would not be alive today. We know that.

He has had 6 surgeries: 1) Omphalocele repaired (one day after birth) and a G-tube (feeding tube) inserted directly into his stomach. 2) Cleft lip repaired, skin tags removed (9mos old) and PE tubes put into his ears, which many non-special needs children have. 3) “Fundo”, (they wrap part of the stomach around the esophagus to stop from anything coming back up) for reflux & constant vomiting (1.5 yrs old). 4) VSD repaired. That was a hard one. We thought we almost lost him. He set many records that we pray no other child will ever come close to. He had as much meds as an adult would need, his heart was at a constant high for nearly 27 hours. In other words, it was as if he was running a marathon that long (2.5 yrs old). 5) Cleft palate repaired. (3.5 yrs old). 6) PE tubes and a circumcision (6 yrs old).

Josiah has a speech, physical and occupational therapist. He’s a very busy little boy. Everything that has been done for Josiah has never been in excess, nor do we regret any of it. It’s real simple, you just do it. Lots of people were astonished when we had 3 under 3 and all in diapers; none-the-less, to have a special needs child too. You know how we respond?; “You just do it.”… As a parent, you are accepting of your children’s personalities, and this just goes hand in hand with it. We just say, “It’s just Josiah, no biggie.” If you make it a chore, it’ll become a chore. If you make it a way of your child’s life, it becomes his/her life.

Some one mom knows said, “I just don’t know how you do it. Handle all of it (his disabilities).” So, she turned the tables and said, “Heaven forbid, your son were to be in a car accident and became paralyzed. Would you love him any less? Of course not! As a matter of fact, you’d probably love him even more, something you think impossible. Knowing he’ll never play football, soccer, or maybe never go to the prom.” All the sudden she could see the lights go on in his eyes, mixed with a tear.

It may seem like a whole lot to swallow, or accept, but it’s your child; you’d lay your life down for your child. Why not change your schedule? How trivial.

This is just to hopefully encourage anyone that is facing a new little life. That you just don’t know about. Scared to death of what could be. But let it be. Do what you can for that precious little angel. Love on them for as long as you have them. No one is guaranteed 80 yrs. Whatever Josiah’s life time is, is his lifetime. We are accepting of that. And we love everyday.

You know what, Josiah has brought our family closer. Josiah helps us to put life into perspective. Josiah teaches us how little things in life are truly so grand. Josiah loves us unconditionally. Ironically, that is how parents are told to love their children. Josiah is joy, hope, love, laughter, tears, fears, fun, and life… all wrapped into one.

And we know, not all of our angels are survivors.  We don’t know why Josiah’s a survivor.  We do know that it’s not because our faith is any stronger than anyone else’s.  God didn’t take anyone’s child because He’s a cruel God. We don’t understand why some are called home sooner than others. But we do know, that no matter how long you get to have with your angel, he/she will touch your life in a way you thought unimaginable. They are a true gift. Please don’t think that if your child doesn’t survive as long as other children may, it’s because you didn’t love them as much as the other parents. Every child is different. Some may not be as “healthy” as others. We do encourage you to help your child; not to withhold any means that they may medically need.

If you are willing to do what it takes, we encourage you to!! It may be difficult at times, and you have to stand toe-to-toe with some doctors, but this is your child. Remind the doctor why he/she became a doctor: Isn’t it because they wanted to help someone have their optimal health possible? You can do it!! We know you can. Josiah’s mother is non-confrontational with a meek personality, but don’t ever try and come between her and one of her children! There is help out there for you! There is state and government funded facilities that can assist you in many things: respite (”nurse baby sitting”), medical equipment, specialists and many other things. You are not alone!

Josiah means “God Heals”, born 1-14-98, and still growing, trusted to our care by God and His blessings.

Lord bless you & your family and your most precious little one,

Barry & Deidri

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