To My Daughter

When you were six we brought another child into our family. We planned and promised a perfectly healthy little brother or sister. A little brother or sister who would look up to you, who you could teach things, play with and grow up with. We planned sunshine and rainbows for both of you. We never planned storms and dark clouds. Our lives changed in a flash. Not only were you no longer the only child you became the sister of a child with special needs. I'm so sorry. I'm sorry we had so many appointments, so many surgeries, so many challenges pulling our attention from you. I wish I could go back to the little girl you were before his birth and explain the changes that were to come. Wrap my arms around you and tell you how brightly your light shined in my heart and how it still does to this day. How that when the times come in the future when our focus is on your brother it wouldn't be because he was more important than you but that it would be because his needs at that moment would be greater. I would explain to you the vital role you would play in his life and ours. I would take one more walk with you in the park with you as the center of my world. One more play time with only the concern of what outfit your Barbie should wear. One more bedtime fairy tale where everything is right and beautiful in our world. One more day with rainbows and sunshine and my precious little girl with blonde curls knowing only laughter and joy.
Your life changed when we started down this road with him. You were asked to understand. At six you were asked to understand and accept things that it has taken me years to come to terms with. You did it. Long before I did you did it. We talk about how much of a trooper he is. How he smiles and carries on and is happy. You young lady are a trooper as well. You fell in love with him too. I can remember you asking to feed him or change his diaper. You played with him, you taught him things and you grew up with him. You became his body guard. You didn't show resentments towards him as others might have. You accepted him and willingly stepped in to love and care for him. You were and still are everything a big sister should be. He looks up to you. He cherishes you. He knows that his big sister is there for him. He doesn't know the sacrifices you made for him but I do. I know how challenging your life became. I know the times you cried for him and for yourself at the loss of what could have been. I understand the heartbreak you felt and I'm so sorry. I want to thank you for helping me thoughout all of the years. For the times you let me sleep when you wanted to play. For the times you said "it's ok Momma I understand". You will never truly know how much you helped me . Or of all the times that if it weren't for you I don't know how I would have survived. Thank you.
I am so proud of the woman you have become and your light continues to shine brighter in my heart as the years pass.
I love you with every fiber of my being. I want to thank you for accepting your role in our lives and his with the dignity, devotion and charm that only you could have. You have a beautiful loving soul and I am blessed beyond words to have you in my life.
Thank you sweetheart.

Carry on With Love,
~Mom

Not So Good Dreams of a Special Needs Mom

We all have hopes and dreams for our lives. What I want to discuss in this post are the dreams I have as a special needs mom when I close my eyes at night. The not so good dreams that leave me waking with my soul aching and a scream caught in my throat.

I dream quite often and most of the time they are typical dreams. Just random pleasant thoughts flashing across the screen in my mind. I usually remember some aspects of my dreams and I wake softly. Sometimes however the movie that was playing in my head is more of the horror kind, a soul shaking experience. I'm curious if I am the only one who dreams the storyline I am about to tell.

In my dreams I am with my son and we will be traveling somewhere to do something. I never really know what we we're going to do because we never make it. The overall feeling is that it was to be a fun outing. Nothing really seems out of place with the exception that it is almost always night in these dreams. We are traveling when there comes a subtle shift, a slight change in the fabric of the scene. At times it's just a breeze, a sound, a piece of paper fluttering across the road before us, a solitary lightening bolt, the car dies or I see an ominous glance from a stranger. Then the world suddenly turns threatening and violent. The darkness of the night grows thicker and we are on the run. I have experienced torrential rains, winds, hail storms and even earthquakes in my dreams. There are crumpled burning cars, toppled buildings with debris all around. Rising waters with no life rafts. Buildings with floors missing or escape doors locked tight. Highways with broken, jutting pavement and abandoned cars. Dirt, charred trees and vegetation. Wild and hungry animals wailing in the distance but coming closer. A deranged person tracking us down with evil intent.  Isolation with no one around. No cell phones and no form of communication. It always seems it is just me and my son trapped in what appears to be a post apocalyptic world trying to escape with no one to help us. It is up to me. I have to protect my son. The forces that wish to harm aren't coming for me. They are coming for him. I think that is the most disturbing part. Come for me not my baby. He is innocent and defenseless. I scream for help but no one comes. I am alone. Many times I have to pick him up and carry him over large debris fields or through a maze of a delapitated building that always strangely resembles a hospital. At times someone will have started the dream with us but they always get lost in the maelstrom leaving me to be our only hope for survival. One of us will be hurt. We struggle and fight for safety, for freedom, for life. Somehow amidst the nightmare scenario we find a way out. A chance escape. Once we make it out I still see no people just desolation. The landscape ahead is dark and fragmented. Occasionally the person from the beginning of the dream reappears. Most of the time though it is just my son and I on a highway with nothing in sight. All I can see are the reflective lines on the road ahead lit by the twin beams of light from the vehicle I commandeered. And darkness. Black velvet darkness... But we are on our way... to somewhere out of the dark and into the light.

I only have these dreams about my son and not all of the dreams he is in are like this just some of them. My daughter who is twenty-four, married with a daughter of her own does not appear in these dreams. When I dream of her they are always sweet dreams. Not terrifying.

Psychoanalyzing these dreams one might assume that I am alone. I'm not. I am married. Not to my son's father but my husband is very loving and supportive of me and my son. When I need him he is always there. I have supportive family and friends who love us and will help out. So why is it my subconscious tells me I am alone in this war? That in the deepest darkest aspects of our battles I fight alone.

I think that maybe I have these dreams because the fear and concern for his well being are at the core of my soul and as his mother I feel it is my war to fight. The illnesses and evils of hurtful souls are my enemies. My son is innocent in this war and I suppose that I feel in the end I am his defender, his protector and we will survive. We will make it through the battles of this life and our journey will continue to brighter days.

Carry on With Love,
Sharon

How to Vent a G-button

What You Didn't Learn While in the Hospital

When my son was born he did not have a suck or gag reflex. He could not suck on a bottle so thinking it was just the plastic nipple I tried breast feeding but he simply could not latch on and suckle. He was given nutrition through a nasal gastric tube. At two weeks of age the doctors determined that he most likely would not develop the suck or gag reflex and he was suffering from reflux. They performed  procedures called Nissen Fundoplication and Gastrostomy tube placement. Afterwards I would sometimes see the nurse attach a syringe and hang it up beside my son. I don't remember ever having it explained to me why. Even if she had explained at that time I was on overload. My baby had problems I didn't understand and I was going to be responsible for this fragile little life. I had puppies die on my watch before through no fault of my own but still I felt guilty for it. How could they leave this sweet baby in my care! I honestly cried when after a month and a half they said he could go home. I was terrified! I remember that moment and I remember the panic and terror as I screamed "NO... NO... NO... I can't.. I will hurt him..." But they sent him home with me just the same and no I didn't hurt him and he is now 17 years old. At that time they threw so much information at me in such a short period of time there was no way I could retain it all. I did not log the venting information away in my brain. It wasn't until a few days after we got home and a frantic 2 a.m. call to the surgeon that I found out I had to vent his stomach. My poor baby. He was so uncomfortable. I knew he couldn't burp after the procedure but again it just didn't click. Too much information. Once I hooked up the open syringe gastric juices literally hit the ceiling. His little tummy was full of air. Now I am basically a pro at getting air out of his belly and I know that if I don't vent he will either throw up or have really painful gas. Given my experience and the fact that there are numerous people who don't really know how to do this, basically for the same exact reason I didn't know, information overload, I decided to create this post. I hope it helps.
This is how I vent when my son gets air in his stomach.
First get a 60cc syringe.

Trust me when I say do not try a 5cc syringe unless you want gastric contents all over you and your child and possibly the floor.

Attach the syringe with the plunger at around 40cc as pictured and insert it in the extension you use for feedings. I probably should add another word of caution here.. don't be looking inside the syringe when you attach it to the button. Just trust me.

Now attach the extension to the G- button. Slowly pull the plunger out. The suction provided when pulling the plunger out should allow trapped air to begin to flow. Positioning will also help. If possible lay them on their left side and gently push on the side of their stomach between the G-button and their left side.

Once the air stops coming out use the plunger to return any stomach contents that flowed up into the syringe. Be sure not to push air back in. You only want the contents not the air to go back into the stomach. When I vent if the contents are really bubbly I'll leave some of it out but you want to put as much back in as you can so you don't disrupt the Ph balance in their system. Be sure to follow up by flushing the button with a small amount of water. To flush detach the extension from the button. Fill the extension with water so there is no air in it. Fill a 5cc syringe with water. Attach the extension to the button. Using the medicine port on the extension attach the 5cc syringe and flush the water through.

Try this technique before and after feedings and see if it helps your loved one to feel better. If you find that you are getting a lot of air after feedings ask your doctor about using Farrell bags.

Carry on With Love,

Sharon

MRSA - How to Identify and Treat

http://thistooshallpass-sharon.blogspot.com/2012/06/mrsa.html

This link will take you to another blog site of mine where I posted an article regarding MRSA. How to identify and treat it from a mother's perspective. I hope you will find it helpful.
Carry on With Love, ~ Sharon

Five Myths About Cerebral Palsy

There are many myths and misconceptions about cerebral palsy (CP) and as parents we hear all kinds of nonsense. Well I call it nonsense because I understand my life and my child but I have to step back and realize what is second nature to me is foreign to others. Children and individuals with CP are just like everyone else. The difference is their bodies simply function differently. They hope, dream, love and strive for acceptance from their loved ones and from the world in which they live. I am hoping to end some of the nonsense ideas people have on our lives so let's just dive right in...

Life Expectancy: In the beginning Alan's life expectancy was a huge concern for me. I worried over it until I finally came up with the strength to ask his pediatrician about it. I asked what his life expectancy was and I will never forget the physician's response. He asked me to look at the bottom of Alan's feet. Then he asked what I saw. I said "nothing".. To which he replied "Exactly.. There is no expiration date stamped on your son's feet. No one knows how long he will live just as no one knows how long you or I will live. CP is not a terminal disease or illness. Do not put a limit on his time here because I'm not. His time here is up to God and he might out live us all." CP is not a progressive disorder, disease or illness. It is the result of some damage to the brain that affects the communication between the brain and the body. There are risk factors that are higher for individuals with CP. The risk which is highest on my radar is respiratory issues and complications. Because my son cannot move about like the rest of us and his lung capacity is not the same as ours a simple cold can turn into a life threatening situation for him. Any changes to his respiratory processes throw up big red flags for me. So in terms of life expectancy CP itself does not change the life expectancy for an individual but the complications from illnesses are the concerns. Be diligent in responding to changes in their health. Stay on top of those changes to help avoid dangerous situations for your child. Be the parent that the receptionist at the doctor's office knows who you are the moment you begin to speak and that they also know that you will not rest until your childs needs are met.

A Burden: This is a pet peeve of mine and if you want to see how quickly I can flip from friendly to your worst nightmare just mention this in front of my child. I have been on the receiving end of a conversation that starts out much like this... "it must be such a burden to have a child like that... Blah blah blah". Most of the time I can keep my temper in check long enough to either shut them up and walk away or shut them up and explain how incredibly off base they are in their assumptions. My son is not and has never been a burden to me. EVER!!! Yes sometimes meeting his needs are challenging and sometimes, well I'll be honest, most of the time I am exhausted but I have never felt burdened by him. He is a true joy. He has the most pure, kindest and gentlest soul of anyone I have ever met. He is truly an angel in human form. Don't get me wrong he can throw a temper tantrum with the best of them and he is ornery as he can be but he would never ever hurt anyone intentionally. He loves to tease and joke and see people laugh and he likes to laugh too. If he can make someone smile it truly thrills him. I believe I have shed more tears from laughter with him than I have from sadness. I have experienced joys with this child that I wish everyone could experience. I tell people he is a blessing to me and I mean that with every fiber of my being. He is a blessing and a gift from God. He shows me the true meaning of love and helps me to enjoy the simple pleasures of life. My life has been enriched beyond measure because of this child.

CP Gets Worse: Wrong. As I mentioned before CP is the result of damage to the brain. Unless there is some other issue such as a mitochondrial disorder or something the is degenerative in nature the damage that has been done is done. It will not get worse but it will not correct itself either. That aspect is done. Now, the spasticity of the muscles and the development of scoliosis can and sometimes will create more problems for the body as the child ages. This is one reason people think CP gets worse. It really doesn't but problems do develop as a result of the CP. It is imperative to participate in interventional measures such as physical, speech and occupational therapies to combat the effects on the body. Develop a cooperative relationship with your child's pediatrician. They will be your best guide in navigating a life with CP.

Mental Retardation: I know the "R" word has become a political correctness hot button for the special needs community. It is a desire to bring the world into the light and develop some consideration of how the word affects individuals affected by a disability. I am fully on board with that thought. I use the term in this section as its dictionary meaning of slow. People assume that because my son has physical challenges and sometimes spit rolls out of his mouth that he is ignorant or dumb or has the mental capacity of an infant. Ohhh those people are so wrong! My son is quick and very capable of learning. His issue is not in understanding the world around him but in getting the world to understand him. He is very well aware of what goes on, of what we teach him of how he feels and what he knows. I can guarantee you he knows far more than even I realize but he can't express it effectively because his body will not cooperate. I can ask him anything and he will have an answer but I have to ask the right question to understand his answer. There are times when people will ask me the dumbest question with Alan sitting right beside me. Sometimes he vocalizes his contempt for their assumption that he is of limited mental prowess. So I allow him to put them on the spot. I find out what he wants them to know and I'll tell them. More than once people have turned red faced and stumbled for words. Just ask his last teacher if Alan didn't put the teacher's ignorance and negligence on display for the world to see. He did and I listened! When Alan stands up for himself and stands against the ignorance of others in regards to his intelligence I am so proud of him. It hurts my heart that people assume that of him. The world can be so cruel and people tend to judge books by their covers. So unfortunate for them. When things like that happen I kiss him on the head and say "you tell them baby." Individuals with CP are just as intelligent as anyone else in this world. They are simply trapped in a body that refuses to work with them. Please do not deny their intelligence because of the packaging.

Unhappy: Wrong again. While it is true that my son gets extremely frustrated he is not unhappy. In fact he is one of the happiest people I know. He knows the secret to happiness. Simplicity and love. My son is very simplistic. Meaning material things hold no value for him. He doesn't care what the latest wardrobe craze is or what cell phone is the hottest topic. He doesn't care. It does not matter to him one bit. Are his needs being met? Check. Is he comfortable? Check. Is he surrounded by people who love him, accept him and cherish him? Check. Is there laughter? Check. All is right with the world. This is how he views the world. How wonderful would it be if we all held that view?

My son is a blessing. I realize my examples are based on my experience with my son. I  cannot with all accuracy say that what I have said holds true for everyone with CP. The reason is they are all individuals. Just as you and I are. No two individuals with CP are exactly the same. My son has Mixed Tone Cerebral Palsy affecting all extremities. Quadriplegic CP. His body is greatly affected and there are others with the same diagnosis. Among those individuals there are just as many differences as there are similarities. I ask that you never underestimate anyone with CP. Their abilities just might surprise you.

Carry on with Love,
~ Sharon