I've noticed ever since Aiden's diagnosis our days are kinda broken up into three categories, the good days, the bad days, and the angry days.
The good days:
Good days for Shawn normally start at about 5am or so waking up to his alarm and Shadow waiting at the bathroom door to "help" daddy get ready (Anything to do with the bathroom is Shadows favorite part of the day, he'd sit in there all day if we let him). For me they usually starts at about 6:25am right before my alarm goes off, normally I wake up all on my own to Aidens kicks and an empty stomach. Shadow meows and scratches at the bathroom door and "helps" mommy get ready. On good days Aiden stays active for a good part of the day, he kicks anytime mommy starts to feel sad. He knows better then anyone exactly what mommy is thinking and he knows how to make her smile. On good days there will be random moments during the day that I stop and smile because my little one is making his presence known.
Good days are usually days that we only cry maybe 1-3 times, days when even though the storm is raging on around us some how God has calmed his children. Good days are the best because things seem ok in the world, you can say Aidens diagnosis without dieing inside. Good days are the easiest because you know that God is with you, that HE is working in every situation that everything is in HIS hands. He wont let you fall, God loves his children and isn't trying to hurt them. You know that God created Aiden and gave him to us because HE knew we could see Aiden as the miracle and blessing that he is.
The bad days:
Bad days can start a couple of ways usually it starts with the alarm going off and the first thought through you head is "My son's going to die and there's nothing I can do to save him". Or my personal favorite is having dreams, those can go a few ways too. The first is that you dream that Aiden is born and is perfectly healthy, the doctors were wrong there's nothing wrong with him. He grows up and we don't have to say goodbye to our beautiful son. Then you wake up to the reality that that's not how this is all going to play out, that Aiden is going to die and there's nothing any earthly being can do, and that maybe it's God's will that Aiden be called back up to Heaven. The second is that you dream about the day he's born also being the day you say good bye. Then you wake up only to realize this is most likely exactly how everything will play out. Your heart aches like an ache that's indescribable, you can feel it in every inch of your body, like nothing could ever be ok ever again. The third is that you dream that he's born and while things aren't great he makes it and is stable, he's able to come home and is doing well. Then you dream that after some time you decide it's time to go back to work and half way through your work day you get a call to let you know that he's gone to be with Jesus and you weren't there. Most of these dreams are then accompanied with waking up sobbing and begging/pleading with God to take this away to make it all better. You spend hours crying because there's nothing else you can do, just cry and pray.
For Shawn bad days only get worse because he goes to work and has an hour long car ride by himself to think about everything, then he gets to work where he mostly works alone and has all day to think...
For me bad days seem a like eternity because Aiden doesn't wake me up with his soft kicks in fact he doesn't move for a while. I normally spend the first 2 hours begging and pleading that he please just kick once to let mommy know he's still there (It never occurs to me on bad days that maybe the reason that he's not moving is he's sleeping, he was up with mommy at 2:30am trying to comfort her kicking as hard as he could to tell her that she can stop crying, he's still here now). Then it never fails that I either get a patient who wants to talk about how they lost a child and never got over it, or one that's very curious about my pregnancy and my little Aiden. How could I ever say to either "Can we please change the subject, my son is going to die in the very near future and I'm already dieing inside?".
Bad days make the world seem so grey, its hard to keep moving forward it's almost as though everyone and everything is out to get you. Bad days are normally the worst just because your a mess, you can't hold it together all you can think about all day is what is about to happen and how you have no control over it.
The angry days:
Angry days are my least favorite because they show up so unannounced, and they leave the worst taste in your mouth. Angry days can start a multitude of ways, they can be good days that turned angry when someone said the wrong thing, you saw something that made your blood boil, they can be bad days that just get the best of your anger, or simply you wake up mad.
Angry days are the days that you hate the world and everyone in it, what's the purpose why keep going, why can't you crawl into a hole and never come back out?
Now to understand an angry day, you'd have to understand why you'd be angry. It's not that your angry at God for this happening, in fact most angry days your not angry about Aiden your angry about all of the idiots in the world who have perfectly healthy children that they take for granted. Angry days are days when you could easily scream at someone to grow up and pay attention to the wonderful little blessing they've been given, you know the one their constantly pawning off on someone else, the one they never spend any time with. Angry days are when you see your friends and family complaining about trivial, completely fixable issues in their lives and you want to jump in and tell them to shut their mouths, that their incredibly blessed that that's the only thing that they have to worry about. You want to tell them all the ways you thought up in .5 seconds to fix their issues, yes some of them aren't easy changes but you can do something about it. Don't like your job, look for another. Don't like your roommate, find another one. Boyfriend/husband/whatever treats you like poop, screw them! you can make it all on your own. Angry days are when your in the store and there's a mother with her young kids down the isle, and an older couple closer to you. One of the mother's children starts to throw a fit and she's doing everything she can think of to get the child to calm down and be quite, and you hear the older women comment loudly "Just tell the child no for goodness sake!" You lose it! that poor mother has done everything she can to quite the screaming child and is now dragging them out of the store, she's embarrassed and doing everything she can, and here's this old lady who thinks she knows everything and passing judgement on her! You comment loudly as if to your spouse who has a face that shows he's just as upset and offended as you are, "Wow that was rude! poor girl did everything she could to quite her child and some people have the audacity to think that somehow they could have handled it better!" then you go on to say still loudly "Have you ever tried to quite a 2 year old who's decided they've had enough? When telling them no, threatening time outs, telling them to be quite and that's enough in the angriest voice they've ever heard? Have you ever had to remove them from the situation, to drop everything and leave because you've done everything possible and their still screaming bloody murder? I bet you haven't other wise you wouldn't make such rude comments, you'd just ignore it like everyone else and save the poor mother some embarrassment!" still boiling you get into what really just makes you see red and comment even louder then any of your other comments "For all you know that child has special needs and sometimes there's nothing to be done about a tantrum other than try to contain it, then what your the a** hole who looked down on a mother for not being able to control her child with special needs, all because you don't understand her child!" Angry days are the days when you see a parent of a child with special needs going out of their way to make things easier, make things as normal as they can, then you see someone who simply doesn't understand giving them grief because their child is somehow disrupting that person's life. Angry days are when someone says something to you without thinking it through, you know in the bottom of your heart that they meant well, but they were so far off base you can't help but be angry. Angry days are when you see young kids making fun of a kid with special needs because their different, or they don't understand something, or get frustrated and throw a tantrum because they can't communicate what they want. All because no one ever took the time of day to explain to them why the other kid is different, to explain why they get so frustrated, no one bothered to stand up for this little kid. If someone would take just a few minutes to explain it to them, to tell them how they could help, they'd understand children are much more caring, loving and understanding then anyone ever gives them credit. Angry days stem from people not understanding and being afraid of whatever it is because they don't understand it. Normally angry days are the hardest to deal with because you spend much of the day so consumed with rage at everyone and everything, then spend the evening/night apologizing to God and asking for forgiveness for having let the Devil whisper evil thoughts into your ear, for having lost your temper so many times.
Angry days for me usually involve people taking what they have for granted, and children. I have an especially soft spot in my heart for children and my blood boils when I feel that their being mistreated, neglected, or taken for granted. My soft spot for children with special needs is even bigger and normally where my anger becomes uncontrollable. People don't understand children with special needs, their afraid of them, avoid them like the plague. Little do they know that children with special needs are just children of God that he loved so much that he never wanted them to grow up and lose their childlike faith, they often go back to the father before others because he can't stand to be away from them any longer. Children with special needs are often viewed as something to be ashamed of, or to pity but honestly their the greatest gift in the entire world. Their are a million lessons to be learned from them, loving unconditionally, over coming judgement, and patience lots and lots of patience, these are just what comes to mind right off the bat, but there are so many more.
At some point in any type of day you come to a point where your emotionally numb, you can't feel anything anymore simply because it's too much.
Then at the end of the day we come home and hug, everything comes rushing back but in a good way a healing way. When we're together as a family, Shawn, Aiden, Shadow, Missy, and I the world is right again, we can do anything together. My little family all of my own means the world to me, my husband is my back bone when I'm to weak to stand, Aiden gives me strength to do and face things I never thought I could, Shadow and Missy are great listeners they hear it all and don't judge, all of them are there to catch me when I feel like I'm going to fall, they reassure me that God is faithful. Our love for God and each other is honestly what keeps us going each day, it makes everything wonderful again.
I have so many blogs swimming around in my head, I'm sure that it will take me time to write them all down, but I'm trying to be painfully honest and open with everyone even if it hurts them or me. Not because I want to be harsh or mean, I just want for people to be understanding of our situation and know that even though we're going through this storm we're sharing because we love you all. We are so grateful for all of your love, support, and prayers for our family, it means more to us then you will ever know. We're sharing because we want for you to be a part of our family and Aidens legacy.