Tuesday, September 16, 2014

What are you thankful for?

I am thankful for this day! Nothing exciting happened today, I am just thankful that I have this day.
 

 I am excited for this new journey we are on with our son. Last week he had another (4th one?) swallow study done and he passed with flying colors, just like I knew he would.We are now free to attempt eating through his mouth as much as he will let us. This is GREAT news because our goal, for him, is to get rid of his g-tube. I would love to see it completely taken out within a year. Please pray that this will happen.

What are you thankful for? Any new and exciting adventures?

Monday, September 15, 2014

Thyroid cancer awareness

September is a very busy month for me. Not only is it Hydrocephalus awareness month, but it is also Thyroid cancer awareness month! I hope you check yourself this month and make it routine (ladies, you could do it when you are doing your monthly breast exam). It is easy enough to do. I wish I had known. I didn't even know what the thyroid did, until I had it removed! You can read my full story by clicking HERE.

If you want to know  How fast does Thyroid cancer grow? You need to check out the link! PLEASE PLEASE PLEASE, check yourself so you don't have to go through what I did. 

Saturday, September 13, 2014

You know you are a special needs parent when...

You know you are a special needs parent when...
  • You know how to make a kid mobile, in every situation, even though they may never walk
  • You have whole new line of clothing to work around cords and tubes
  • You have 101 ways to rig up a feeding tube so you don't have to hold it
  • You can fold a towel 20 different ways in order for your child to be supported in a chair or car seat
  • You become an expert on packing stuff
  • When you see a back pack, you don't think of school. You think of places to put straps to keep O2 tanks upright
  • All the play time with dolls as a child has prepared you to dress someone that can't do it on their own
  • You learn to live one day at a time, and in the moment
  • You learn to laugh in situations that would make any other person cringe
  • You could have a medical degree, if they were to base it on experience
  • You know all the ways to get to the hospital cafeteria and which menu items are good
  • You know that no matter how organized you have become, you can plan on being at least 1/2 an hour late
  • You may pay too much for things like eating utensils, but you find a way, because they need it
  • You have many people that you know in the medical field, because they have treated your child
  • Strangers coming into your house is something you have gotten used to
  • You have learned to relax about silly things like cleaning. It will eventually get done
  • You love deeper then you could have ever imagined
  • You always think about death and what will happen when you are not around
  • You worry more
  • But most of all, You know you are a special needs parent when you see the good in people and appreciate life as it comes.


Thursday, September 11, 2014

On this day...

 

Where were you on this day in 2001? 

I had just gotten done working 3rd shift in a factory and was trying to go to sleep when my roommate woke me up and said a plane hit a building in New York. I got up, looked at the tv, said something like "That's interesting." and went beck to bed. A few minutes later I got woke up again saying that another plane hit the other building. OOOHHH ok now I was up. 

I couldn't believe what I was seeing. It didn't seem real. This is something that you only see in the movies. I can't say that I felt really affected by the whole day because I was not personally connected to anyone, but I do (did) realize how the rest of the country felt, and the significance of everything. I too was angry and sad for the people that lost their lives and risked everything to help others. I hold all of them in my heart and say a little prayer for them. I hope you do to, and if you have been affected by this day in history, I hope you have found peace.

Every year we have the same conversation... Where were you on this day?

Sunday, September 7, 2014

I see you there, you special needs parent.

I see you there.
I see you in the doctors office trying to figure out what is wrong with your child. I see the worry on your face. I see the heartbreak you are feeling but trying not to show. I see the brave face you put on to your child and the world. I see your struggle as you wonder where to go from here.

You are a special needs parent.
You never thought this would happen to you. You don't know anything about "the system" or how to navigate your way through it, so your child can have everything they need. You have no one to talk to, no one that "really" understands. You rejoice at every new thing they do, no matter how small it may seem to others, because it is HUGE to you. You try to find others that are like your child, so they know that they are not so strange. They are beautiful and you want them to KNOW that. I see everything that you have given up. I know this may include a job, friends, and family that you always thought would be by your side. I see the sleepless nights, filled with worry. I see the smile on your face when you think about the day and everything that your child did on that day.

You have a special needs kid.
All this really means, when you get right down to it, is that you are a fierce and protective parent who stands up for your child, no matter the cost to you. I see you fighting back the urge to punch someone in the face when they stare at your child. Don't they see that they are beautiful? Don't they realize that sound they just made was a "I am happy to see you" sound? I see you fighting with the doctors, because you know your child better then anyone else. I see you going to the hospital every month (or more) because your child is sick, and their bodies are fighting so hard. I see the mixed feelings you have EVERY DAY because you love your child more then words can say, but some times you just want the pain to go away! Sometimes you just want them to be normal. I see you wondering what that would be like...if only they were normal.

I see you there, you special needs parent.
You are doing a great job! I see you shaking your head with doubt, but it is true. Your child knows that YOU love them, just for who they are. I see your struggle, your joy, and your pain because I am there too. I hear your cries. I see the tears of joy. You are not in the alone. YOU ARE DOING A GREAT JOB! and your child is thriving because of you!     

Saturday, September 6, 2014

September is hydrocephalus awareness month

This month has so much meaning to us. Please help spread awareness by sharing this with everyone you know.
 
There is no cure for Hydrocephalus, just surgery.
This is what our son has. He had brain surgery when he was 5 days old to get this shunt put in and release the pressure on his brain.
Please visit www.HydroAngelsOverAmerica.org to learn more and to support their cause. Or go to http://www.hydrocephaluskids.org - http://www.hydroassoc.org/ - to learn more

This can affect anyone. It does not know race, age, gender, or social status. You can have when you are born or acquire it later in life. You can get it from an accident or just wake up with it one day.

Please help spread awareness this month and support these great causes to help find a cure!




Friday, September 5, 2014

Finally getting help

I am not even sure how to start except with...if you have a special needs child, you need to speak up for yourself!

Just a little background, for those that don't know it. 
 Our son was born just over 2 years ago. We were first time parents, and our baby had a lot of issues. We knew that he would never be "normal." We told everyone our financial worries and how we didn't know how we would make it if I had to quit my job. Well, for 2 months, while he was in the NICU, we asked everyone we knew if they could help us out and watch our child in our home. We didn't know how we would pay for it, but we would figure it out.

We searched high and low and couldn't find anyone and I was forced to quit my job. We put our lives in God's hands and hoped for the best. After awhile we did find a few people that were CNA's that could come for a few hours a day so I could do farm chores outside. 

When we first brought him home I got about 4 hours a sleep a day and seriously considered putting him up for adoption. I just couldn't take it. He was so needy. His issues were so big. He turned blue more times than I care to talk about. I didn't leave the house for 2 weeks; not even just out the door. I was literately loosing my mind. And we had no help

Fast forward 6 months.
Our son was in and out of the hospital every month for a lot of different reasons but mostly because he kept getting aspirated pneumonia. His lungs were so bad. He needed o2 all the time. He was on monitors. He had gotten a surgery to twist his stomach and put in a gtube during one of the hospital stays. He couldn't handle a lot of food going in at once so he was on continuous feed. Life was stressful enough with everything he had going on and to top it off we were barely making ends meet because of me not bringing in any income. But this was the life God gave us and we had hope. We were optimistic about the future (or insane) and somehow just knew that our struggles would end soon. We still had little help, and the help we did get, we could barely afford to pay. We put our fragile son in situations he probably should not have been in because we couldn't afford to pay any helpers.

1 year old!
Our son is still on o2 and monitors all the time. He had not had any hospital stays that were not planned. He could handle feedings better and faster so we didn't have to have him on continuous feeds. It was nice to get rid of that cord for a few hours a day. We still had no help and were struggling to make ends meet.

2 years old!
He is doing better and growing stronger. We are now focusing our attention on pushing our son to eat through his mouth, standing more, using his fingers more, and trying to get him to communicate what he wants. We have a second child, that is healthy. We are still struggling to make ends meet.

With all of the therapy that our son needs, and trying to care for the baby, life is still a struggle. There are days when I think I am still going to end up in the loony bin. I have a constant guilt that I feel. Like I am not doing enough. I think that he could be doing so much better if I just push myself, if I just let the baby cry for a bit, if I just followed what the doctors tell me to, if I spent every free moment working with him and trying to get him to do something.

So what happened?
I finally got someone to hear me. I broke down to a complete stranger. I had been telling everyone that asked what had been going on at home and how hard it was for us. How we were barely making ends meet because I was not working. How frustrated I was with no being able to fit in all of the therapy that our son needed. I told people about the guilt I had. Even with all of my worries complaints, and guilt; I would always put a positive spin on it. And I always smiled, even through the tears. Said it was all God's plan and that He was setting us up for something really big to happen in our lives. That may have misled people to think that it was going to be ok and that I/we were handling things. We were...kind of...not really. 

Then finally...finally...I broke down. I cried. To a complete stranger. She was going to be a new therapist that would come to our house, and give me one more thing to do with our son. One more thing that I would have to try and fit in. One more thing that I would get to feel guilty about if it didn't happen that day or he wasn't showing signs of progress. I wanted this therapy. I knew our son was ready. But on that day, I couldn't take it. I didn't know if I could try to do one more thing. She must have looked at me and thought I was a complete mess because she talked to some people, who talked with other people, and now (finally) we are getting help! We are getting skilled nursing care, up to 20 hours a day, 7 days a week! They come into our house and help with anything we need help with. They will come to doctor appointments. They will do therapy. They will come to the park to play. They will go on vacation with us and be an extra helper.

This is a good thing
I can finally get a break. If the youngest was up all night and is finally taking a nap during the day, I can go to our bedroom and take one too; without feeling guilty about not doing therapy. My house can be just a bit cleaner because I don't have to choose between cleaning or therapy. Maybe the hubby and I will go on a date and actually be able to enjoy ourselves because our son will have the care he needs. And the best part...it is all covered through our sons insurance (Medicaid)!

What you should do 
 After talking with one of the nurses I found out why we didn't get help 2 years ago. The discharge Doctors in the NICU (and every Doc after that) sent him home on a scheduled O2 rate. If one of them would have put in the order that if some event happened (ex. turned blue after coughing) then the O2 should be turned up, we would have gotten help right away. Being sent home with something scheduled does not require a skilled nurse to make a decision about cares. There has to be a qualifying event that forces someone to make a decision about the care of the patient. (this reasoning makes me so mad, and may only pertain to the state of Wisconsin, but that is a subject for another day)  

If you have a special needs child and are feeling worn out, guilty, and like you just can't go on you need to tell everyone. I was telling all of our providers (16 of them) for 2 years about our struggles. I knew they heard me because they would respond. But they must not have known just how bad it was, because no one took action. They said our son wasn't sick enough for us to get help. It wasn't until I cried "uncle" to the right person. So keep talking. Keep telling your stories. Keep trying to get help. You shouldn't have to try to do it all. You shouldn't have to choose between therapy and a clean house. You deserve sleep. You deserve time to yourself to do what ever YOU want, and you shouldn't feel guilty about it. Just keep talking. And I will keep praying for all of you that don't have help, are feeling desperate, and want to just give up. If there is some way I can help you, whether it is a specific prayer, or trying to find you help, please contact me. I don't want anyone to fall through the cracks like we did. I want to help you in anyway that I can.