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Thrown a “curve” ball….

So just getting this out of the way first…I’m sick, Jacob’s sick, Evan’s…not as sick but still stuffy, so needless to say my head hurts, my eyes hurt, every orifice in my head/chest is filled to the brim with snot/fluid so bare with me. I’m kind of crabby. I haven’t slept well in 3 days, Jacob is miserable and we are trying desperately NOT to get Braden sick. Without nursing though, that limits us from quarantining him from me :/ Poor dude, fingers crossed he stays healthy.

Now that that’s out of the way, I will recap our visit to Iowa City for Braden’s CAT scan. Thankfully Uncle Caleb and Aunt Rose let us crash at their place and they graciously watched our dog Bailey for us as we tend to forget to arrange a sitter for her in the chaos of finding people to take the other two boys.

It was a long day in IC. We had to be there at 7 am and get checked in. He did great with the sedation and they were able to give him anesthesia through his vent without the need to put in an IV. They had to up his vent settings a bit on the hospital vent to allow him to breathe comfortably but once they got that figured out he did great. We went to the Level 2 recovery and was able to be there when B woke up so he wasn’t scared. The nursing staff there was really amazing and they all loved him. This was about 830 when it was al said and done and we didn’t have our appointment with the neurosurgeon until 1:30pm so we had a ton of time to kill. Thankfully my smart phone was able to download about 10 Bubble Guppies videos to keep B occupied. Not sure the people around us appreciated that as much as he did! At 1:00 pm they got us into see Dr. Menesez. We knew Braden had a a pretty significant curve in his thoracic spine but to see it in 3D was a completely different matter at together. It turns out what we all thought was an instability in C4 actually turned out to be instability in C6. This is because his C2 and C3 are completely fused together and his C4 and C5 are completely fused thus making them appear to be 1 vertebrae. Turns out the space between C3 and C4 is the only way B has been able to move his neck at all. Thank God for small favors…or vertebral space in this case. IT has been deemed that he does not have any cervical instability but we were advised with the extreme curvature in his thoracic spine (particularly T6-T8) that just to be safe, he is to NOT sit at an angle any greater than 45 degrees…which is about all he will tolerate anyway. We have made an appointment for November 16 to meet with the specialist who deals with that portion of the spine in hopes to maybe get a plan of action started so we aren't even sure what they can or are able to do for him until we speak to Dr. Weinstein. So that was our visit in a nutshell. Not exactly what we were expecting but like everything else we will tackle one thing at a time.

So, like I said, I’m kind of crabby so allow me to rant for one moment. (If you don’t want to read beyond here…go ahead and close out…….NOW)

So I would just like to say that one thing that bothers me a lot (and it shouldn’t but I’m a mom and I get a bit protective of my children) is when people question another person’s parenting ability or the children. I would like to think that since I have children that makes me at liberty to raise my kids the way I see fit. My children are fed, clothed, live in a decent house, have wonderful friends and family that love them and they are amazingly social, friendly children. Do they have their faults? Yes, whose kid doesn’t? To say that your child is perfect ALL of time to me is just plain crazy. Either that or you are on some amazing drugs and please share them with the rest of us. Do my kids get crabby and whiney when they don’t get a nap? Yep! Do they share ALL the time like all the well rounded children on those kids shows we are all obligated to watch? NOPE! Do they push me to the brink of insanity some days? YEP! But honestly? They are almost 2 and 3? They are entitled to their moments. Its that age! They aren’t called the TERRIBLE twos and the TUMULTUOUS threes for nothing. If this age wasn’t trying it would be called…I don’t know… the TERRIFIC twos and TREMENDOUS threes? Last I checked I have yet to hear that from anyone who has children.

To say that them not coping with being 2 and 3 is a lack of parenting is absurd. I’m almost 31 and I still don’t act right on most days. I don’t blame my parents for a horrible upbringing that DID NOT happen. I’d like to think I am the person I am today because of how they raised me…not but the lack thereof.  As a parent you do your best and the rest is up to your child to absorb and hopefully model their life after a good example. Do I sometimes yell at my kids? Yes. Am I proud of it? No. Do I ask for more patience every night before I go to bed to help me deal with the next round of crazy things my kids might do-Like, say play with their poop? Yes. Do I wield that patience to its fullest? Not as much as I should. Do my kids still love me and I love them? Yes. If I yell its probably because I have tried 300 times to sit down, Super Nanny style, and speak to them in a nice gentle tone, on their level, and explain why they are in timeout. Do I sometimes lose my patience because that said child just laughed in my face and doesn’t understand why they aren’t allowed to smack their brother with a plastic recorder just cause he wouldn’t get away from the monster truck he happened to stake claim over EVEN THOUGH he has no intentions of playing with it…he just doesn’t want his brother to. Yes.

Trust me, I try to be the best parent I can be to my kids. I tell them, even after I put them in timeout that I still love them, its OK to make mistakes its all about learning, and to try better next time. And you know what? I must be doing something right because my children are happy, funny, loving kids who constantly hug and kiss us and tell us they love us without prompting.

To say that Adam and I am stressed out is an understatement. We have 3 kids under 4 and one of those has a disability. There are seriously enough people to count on 1 hand, outside of our wonderful nurses that work for us now and those that raised Braden in the NICU that can take care of him. Those people are Adam, myself, Wendy, my sister, and my goddaughter. 1 of those people lives 1.5 hrs away and the other lives 5 hrs away. We don’t get a break most days so please bare with us and our sometimes tiny fuse. Would we have it any other way though? Hell no. The alternative is FAR worse than a few sleepless nights. I’d take this stress times 100 if it means that Braden will outlive us.

Just please, PLEASE before passing judgment on others, walk a few miles in their shoes. I’m not looking for sympathy, just understanding. Not many people can say they sleep with one eye open so as to make sure their child is breathing and their airway hasn’t become occluded/collapsed. Not many people can say their child has coded in front of them on more than one occasion and had to keep their head on straight in order to ensure they had a heartbeat and started breathing again while inside they are freaking out and pleading desperately that this NOT be the last day they spend with their child. Not many people have gotten a phone call in the middle of the night saying “Hey, this is the NICU. Braden had a pretty significant spell and we ended up having to do chest compressions for 2 minutes before we got him back.” Not many people have to learn to trust total strangers and allow them into their house and trust that they are able to care for their child should he have an emergency situation. Not many people have had to bare witness to those said people breaking their trust that was so hard to build and actually have those people  end up putting their child in harms way and then dealing with the fact that they should have seen it coming before it got that far. Not many people can say they have had to split their time with their kids at home and their child left in a hospital room for the first 291 days of their life to be raised by doctors and nurses (who by the way did an amazing job).

Those of you that have lived this life and have experienced those things (yourself or alongside with us), we love you. Thank you for your support and guidance when we ourselves are freaking out and you are there to lend an ear and to even share your own horror stories. You have made us better people and better parents to our 3 boys. You all are amazing and give us the strength to do what we do and be the best advocates for Braden we can be. You have lived what we live and help us when we struggle and we hope that we in turn can return the favor.

So, that was a long rant, but seriously it was not meant to offend just enlighten. And in closing I think I have 3 of the pretty most amazing kids in my mind. Especially since they love and see their brother as just that…their brother. The tubes and machinery doesn’t define Braden it just is a small part of the amazingly large person that he is. All of these challenges has made us individually and as a family better. We are stronger. We know what matters and what doesn’t and what matters is family, friends, life, and love. I don’t see kids with special needs as someone to stay hidden from the world. They are to be celebrated and shown off because they embody they greatness in life. They laugh, live, and love life to its fullest and have shown all of us what it truly means to be blessed. I wouldn’t have it any other way and I’m pretty dang grateful to have been chosen to be the mom to these 3 boys. I can’t imagine what I did before them!

PS….if none if this made sense I apologize. I’m seriously doped up on cold meds, my head weighs about 400 lbs, and I’m running on about 6 hrs of uninterrupted sleep in the last 2 days!

Posted by Amanda Byersdorfer at 10:21 AM