Uncontrollable

   A few weeks ago Leah had another of her uncontrolled vomiting episodes. They come out of the blue with no warning signs. She is fine one moment and the next she is in a cycle of endless vomiting. The only way to fix this is to take her to the ER and get her fluids. Followed by anti-nausea hoping we can keep her hydrated as her hydration is rapidly depleting. Luckily this only happens about every 8 months or so. We have her on medication to prevent this. It use to be a lot more frequent.
   In the middle of the night it is a rush to the hospital. My daughter in the middle of this is completely fine. She is her usual energetic self. She can't slow down. She is hopping around and throwing up. Due to her other behavioral conditions it is nearly impossible to get her to lay down. This is continuing to deplete the energy that is being stolen from her body. We are entering very dangerous waters. She could go into low blood sugar. This has happened on numerous occasions.
    The doctors are confused upon seeing this bundle of energy. Why are we so concerned? She obviously is doing fine based on the amount of talking and bouncing. It doesn't take long to delve into her history to realize why we are there. We start getting things started. I know what comes at this point. I have to endure my daughter getting an IV. Which she is horrifically scared of. All while she is still vomiting. I usually have to use my whole body weight to hold her down. Along with another person holding her arm. While someone is putting in the IV. The first time they can't get the IV started. We have to start all over again. I really can't stand what she is being put through. However, she must endure to survive this episode. I must press on and so does Leah. We start the other IV and it is successful. She is getting fluids, anti-nausea medicine and starting to feel better. We are able to go home early in the morning around 4:30. We get home to hopefully sleep. An hour or so later it starts again. We have to wait to call her regular Dr at 8. The lack of sleep and anxiety caused me to forget to get a prescription at the ER. I asked the Dr for one. They referred me back to the ER. Wanting me to make sure she is still hydrated. I was not wanting her to get poked for another IV. However, no signs of dehydration was afoot so we were able to get anti-nausea and a prescription. She was finally stable. She usually follows with another episode about three weeks after. However, I made sure we were back on the preventative. She has not of yet had one.
    What do we do when our kiddos are in such a state of flux? This is such a cross to bare. We never know when they will be in the throws of death because of their medical condition. I wish as a mother I was less anxious. I wish that in the moment I could just have complete trust that God has her in His hands. It is so hard to be in a completely uncontrollable situation. You have to make split second decisions that you wish you had more time to weigh options. You don't. You have to do what it takes to save them. It gets easier when you know what worked before. However, the anxiety it doesn't go away. The fear in the moment still trumps everything. What should this teach us? Life is at the upmost precious. Life is fleeting. We can't take our time for granted. We also must not take the gift of our children for granted. Every opportunity in frustration is a moment to remember. We are not so privileged in this world. In our status as humans. We are privileged in the hands of God. Who holds us there. He holds us there through the Blood of Christ. That is the only privileged that has been granted in this world.

Mistakes and Meltdowns

   Leah wanted desperately to go to the Childrens' Museum a couple of weeks ago. It isn't the type of place that Sharon does well at. However, Leah loves and thrives there. It can be overwhelming with lots of things going on. It can over stimulate Sharon. While Leah is always seeking over stimulation. It is hard for us to find things for to do together. Leah is seeking a roller coaster and Sharon wants a merry go round kinda time. Usually I have to sacrifice for the others enjoyment. That day I decided to go to the Childrens' Museum. Hoping that Sharon would be okay.
   It was already late in the morning trying to get them in the car. Once we were in the car I couldn't just back out of going. Even though that was probably the best thing to do. I get there and explain we would play for a bit, then eat, play some more. Sharon started darting around like a stampeding buffalo calf. I had to keep us together. Leah was trying to look at one thing but I had to pull her from it to keep up. We get to the paint room. This is it. Sharon wants to paint for the rest of the afternoon without being interrupted. This works out for me. Leah and I can explore while Sharon is glued to the paint window. However, it is time to eat. I try and find a place outside the museum to eat but could not. I went back in and we sat down eating pizza. It was noisy and lots of things going on around us. Sharon finished well ahead of us. She was in no mood to just sit and wait. Leah wasn't eating at all. It was going to be a long time before we were able to play again. Sharon beginning to get very irritated wanted to go to the bathroom. She loves going to the bathroom to escape. She made her way out of there and tried to go explore. I explained that we need to wait for Leah. I knew then that a meltdown was coming. I needed to find a way to get us out, without her knowing. I tried to get her to the water display by the door so I can easily get her out. She knew what I was doing and dropped to the floor. We were in meltdown mode. I had to get my almost as big as me, very strong almost 10 year old out of here.
    At this point nothing else matters. All that matters is safety. People are around us listening to my very loud angry child that I am now behind dragging to the door. I have to fetch Leah who is half way to the door. She is not happy at all that we are leaving. We argue that we should in fact leave. I grab her while dragging Sharon. A woman is nice enough to help get our table cleaned up. Once outside I tried crossing the very busy street to get to our car. Sharon kept us from crossing. She eventually planted herself on the sidewalk. I knew at this point I was not going to get her safely across until she calmed down. I told her that I would wait for her. On a busy side walk in downtown Madison, WI, my child laid on the ground sucking her thumb for the next 20 minutes. I just sat down drinking my coffee and waited. Leah was still very upset that we could not play in the museum. I suggested that I could take her back when Sharon was at her clinic. Many people were shocked to see her laying there. I knew if I had a man to help escort us across the street I would be able to get her to budge. Sure enough an employee asked if everything was ok. I calmly said she is autistic(she already got that) I'm just waiting for her to calm down. She asked if she can help. I said if you have a male co-worker to help us across the street that would be great. Sharon is not a fan of men. The thought of a strange man touching her would get her up immediately. That is exactly what happened. Once across I relieved the gentleman of his duty. Sharon tried to avoid getting in the car. I said I would get him again. She went right to the car.
   Now I had to get two very angry children home. It was thirty minutes away. The other was ready to tear the car apart because she did not get to stay. I calmly explained that we need to leave. We need to go home. If we behaved better we could have stayed. That did not happen, that is why we are leaving. I make it home and send them to different floors of the house. I try very hard to calm myself down. It was a very hard day. One that could have been avoided. If I would of stayed home.
    We can't stay home all the time though. We can't always avoid a meltdown. What we can do is be prepared that it will happen. Be the best in that moment. Be the calmest you can be. Show the child that you are in control even if they are not. Forget your very public surrounding because it doesn't matter. They don't matter. What matters is the trust your child has in you to get them out of it. They trust that you will be in control in that moment when they have lost it. I'm very lucky in the fact that Sharon doesn't have very many huge meltdowns like this one in public it is mostly at home. It happens at times. We just have to move on. I am not afraid to take Sharon somewhere. I know that it could be something that sets her off. I am willing to deal with that. If it means she will be a step closer to dealing with it on her own.

Letters to special needs parents 1 (a series)

Dear Special Needs Parent,


    You wake up in the morning with a jolt. You get those boxing gloves on because it is a fight. Maybe the fight is at the breakfast table. It is at the bus or it is just getting dressed but eventually you will fight today.

You are not alone

You catalog the emails or calls that must be made today. There are deadlines and paperwork to be sent or your child doesn't get in or doesn't get this. You have appointments that are on the other side of town that you have to get to. Your child is having the worst day since yesterday. But you must get to the therapy, therapy, therapy.

You are not alone.

You realize around lunch time that you might have forgotten to eat breakfast. Your sugar level is low. The 6 cups of coffee that you downed has made you jittery. You have to get them to eat.  It was so hard to get that breakfast down them. Lunch might be even harder. You probably won't eat until they do. It might be awhile.

You are not alone


You finally got something to eat that actually has made you tired. That cannot do. You make some more coffee. The afternoon bares more than usual. You might get the child in a nap which means you have time to get appointments made and emails responded too. Also pickup the disaster that has been left in the wake. But the paperwork is first. It is never ending. You get something finished and a fresh pile ends up in an email or mail.

You are not alone.


You wait endlessly for approval on whether or not your child can sneeze. They can't play soccer or a game with out endless amount of paperwork and waiting lists. You check FB as your friends with ease just sign up their children for whatever they want. You have to look months in advance, get approval and funding for what is an extreme amount of money. Finally after 6 months or maybe more you can actually do that activity safely.

You are not alone


You have been pretty social most of your life. Found that you can get along with anybody. But you find yourself not wanting to be around people. They talk about things that just are not the same. You have no input that matters. All you know is different from them. They talk about TV which you haven't seen in sometime. They talk about shopping with ease. They have discomforts but they are no where near yours. And you find yourself drooling over their discomforts. Finding yourself wishing for their problems. You don't wish to insult them by saying that I wish for that. But as you are daydreaming it may slip out. You find yourself uncomfortable and avoiding the situation all together.

You are not alone


You at the end of the day are exhausted. You think boy that kid has to be exhausted as well. But the kid is jumping off the walls in no mood to sleep. You know what that means, it is going to be a rough night. You make more coffee. Hoping that you can keep them safe always. One day at a time is all you do. It has to be that way. Sometimes it might be by hour or the minute depending on the day.

You are not alone


Take heart parents. Your child is important. They make up something in this world that we cannot. We are the protectors of these special people. It is a blessing to be called upon this way. I want you to know that you are never alone. You might feel like your family is isolated and separate. However, the same feelings run through so many across the world. So many meet the same struggle. Please know that the same thoughts that run through your head are running through so many more. We are together in our fight to be protectors. God Bless you!