Oh how I wish having a special needs child came with a great paying job, lots of money in the bank, and insurance to pay for everything........But I know reality. I know it all too well.
Insurance will drive you mad. And being a special needs Mom I spend hours dealing with insurance, copays, deductibles, and everything in between. I dislike every insurance, I dislike we can't get federal help since Maelee is "not disabled enough". We are the family that will fall through the cracks and there isn't a soul who cares.....except us!
We are thankful for our early intervention program through the CDSA.....but this August we will fall into the category of "too rich" to get full assistance for our daughter. Her therapies alone will cost us more than our mortgage every month. You see the wonderful world of insurance puts caps on how many therapy sessions a person can receive....and Maelee is way past her limits. We are blessed to have the CDSA picking up the extra right now and helping with her schooling/CRBS during school but in August we have to pay 60%.
60% doesn't sound like a lot but it is. Thankful it's not 100%...that will come when Maelee is 3! Maelee has been diagnosed with Mild CP but according to our lovely government Maelee is "not disabled enough" to get any assistance. She spends hours in therapy, working at home, has SMO braces, and I know without therapy she wouldn't be where she is.....but her disability is determined by the government, not the people who take care of her! It's beyond frustrating. I am not asking for handouts, I don't want free insurance, I just want my baby girl to have all the opportunities she can have. And come August we may have to cut therapy sessions out, cut down on time in therapy, or just sell everything we have to continue with her care plan as it is.
I just wish someone would spend a week with us before deciding what is best for Maelee, or that the state I lived in would dig it's head our of .....well you know and realize that we need waivers for people who don't fall into the categories so nicely. That people come in all different shapes, sizes, and needs. That just because she can walk doesn't mean it didn't take an army to get to this point and won't continue to take an army. Because she can use her left side doesn't mean we are done......it's a life long process for her.
I know that ranting about it won't fix the problem but if I could write a post about all the people, places, letters, and times I have been put on hold for hours just to hear "NO" there would not be enough space on any blog for it. I keep trying, I keep searching, and I keep hoping that something will change, that we will find an answers to help Maelee......then I realized today that I am the answer, My husband and I are the answer.
If I have to sell everything we own, walk miles to work, and give up every belonging I have that is exactly what I will do so Maelee can continue to grow and learn while having all the help she needs along the way. Until the government starts to see that disability isn't a description for one category, one problem, or one type of person I will continue to move forward and give Maelee what she needs.
Tuesday, March 26, 2013
True Friends
There is something amazing about the bond you can form with people miles away you have never met or the people who sit next to you day after day cheering their child on in the same way you do. These people are the ones who understand the heartache, the stress, the pure enjoyment of life, and who truly treasure each and every small thing in life as a great accomplishment.
The friendships I have made over the past year since Maelee began therapy has been so wonderful. I have met some great people while sitting in the waiting room of therapy, online on prematurity boards, and recently have come across people who have been sent my way by other acquaintances! The bond we share is something I can't describe, it's like I have known them forever. Their children mean so much to me, their stories matter, and when no one else is there these are the people I can turn to.
I got to a point where I questioned many friendships during the past 18 months of our lives. I have friends who have gone and some who have backed away. I have been told I spend too much time talking about Maelee or that "Wouldn't you rather her just be a kid than spend hours in therapy?". These are the people who don't get it, the ones who can't have empathy for a situation that isn't in their "perfect, rose covered world". These are the people I strive to change but no that I can not. Weather they are family, friends, or acquaintances they will never understand what our family has and continues to go through. They will not be able to fathom heartbreak, fear, stress, anxiety, and every other emotion we have felt. They will never be able to wrap their minds around why we do what we do. And they will never know Maelee in a way that we know her. In order to know someone you have to know all of them, these are the people who close off the conversation and pretend their "perfect" world is all that exists. These are the people who will never know my child in the greatest way possible.
But the people who write emails, send cards, or just text know my life in a way no one else. Want to know my child, and would do anything for my family if we needed it. I truly believe God brings people into your life at the right time and his timing has been PERFECT over the past 18 months! I hope to one day meet so many of these precious families in person, spend time hugging those sweet babies, and allow Maelee to meet her "friends from afar"! One day we will be making a trip to many states and places to meet people who have inspired us, been there for us, and who now "know" us like many never will.
Creating a bond with someone is special, creating a bond with someone who understands your heart is amazing! :)
The friendships I have made over the past year since Maelee began therapy has been so wonderful. I have met some great people while sitting in the waiting room of therapy, online on prematurity boards, and recently have come across people who have been sent my way by other acquaintances! The bond we share is something I can't describe, it's like I have known them forever. Their children mean so much to me, their stories matter, and when no one else is there these are the people I can turn to.
I got to a point where I questioned many friendships during the past 18 months of our lives. I have friends who have gone and some who have backed away. I have been told I spend too much time talking about Maelee or that "Wouldn't you rather her just be a kid than spend hours in therapy?". These are the people who don't get it, the ones who can't have empathy for a situation that isn't in their "perfect, rose covered world". These are the people I strive to change but no that I can not. Weather they are family, friends, or acquaintances they will never understand what our family has and continues to go through. They will not be able to fathom heartbreak, fear, stress, anxiety, and every other emotion we have felt. They will never be able to wrap their minds around why we do what we do. And they will never know Maelee in a way that we know her. In order to know someone you have to know all of them, these are the people who close off the conversation and pretend their "perfect" world is all that exists. These are the people who will never know my child in the greatest way possible.
But the people who write emails, send cards, or just text know my life in a way no one else. Want to know my child, and would do anything for my family if we needed it. I truly believe God brings people into your life at the right time and his timing has been PERFECT over the past 18 months! I hope to one day meet so many of these precious families in person, spend time hugging those sweet babies, and allow Maelee to meet her "friends from afar"! One day we will be making a trip to many states and places to meet people who have inspired us, been there for us, and who now "know" us like many never will.
Creating a bond with someone is special, creating a bond with someone who understands your heart is amazing! :)
Tuesday, March 19, 2013
Finding Acceptance One Day at a Time
Today I was looking back at all the pictures and videos we have taken of Maelee. One that sticks with me is the first time she shook a rattle in her right hand. 8 months old!!! I will never forget that day! I cried tears of joy watching her do something we knew she was going to do but just didn't know when. This was one of those things I kept comparing to other babies......I know I should never do that but babies shake rattles.....so I was waiting impatiently for this to happen. Little did I know the waiting game was just beginning for this milestone.......yes she shook the rattle in her right hand and learned to shake both hands simultaneously (11 months) but when would she shake the rattle only in her left hand?
This was just the beginning of a journey for her, a life long journey. Throughout the past few months I have spent many hours reflecting on where we have come and where I dream we go. One of those dreams has always been that Maelee will use both sides equally but unfortunately the more she develops and wants to be more active, the more it becomes apparent this dream won't happen......
Dreams......
I dream she will shake a rattle only in her left hand but I know she will shake both hands together and that is amazing!! I dream that one day she will be able to walk without weakness or muscle fatigue but I know that she will work the rest of her life to keep her mind and muscles working together. I dream that she will learn to scribble and do things with her left hand but I know she will be right handed because of her disability. I dream that she will have no struggles to walk up stairs or kick a ball but I know that this does not come easy for my child.
Reality.....
Maelee will shake a rattle with both hands at the same time.....that's a miracle for her! Maelee will learn how to read her muscles and body and she will know what she needs.....she is a determined little girl. Maelee will draw, scribble, color, and eat with her right hand....she will learn to use her left for assistance. She will walk up stairs and learn to kick a ball....it may not be the way you and I learned and it may take longer but she will do it. Maelee will never use both sides equally.
Letting go of the dreams for that "perfect" child...... While pregnant every woman dreams of that perfect baby, the perfect birth, the perfect child, the perfect life, the baby and family that is the envy of everyone they meet. I am jealous of women who are pregnant the whole 40 weeks, find myself jealous of people with preemies who have no long lasting health complications, and jealous of people who do the "normal" running around from games to dance instead of therapy to therapy session.When something traumatic happens in your life you grieve and in those stages of grief getting to the one of acceptance has been the hardest for me....I would be lying if I said I was fully there. I am not. There are days I am angry, upset, and would trade anything to "fix" Maelee. This may sound crazy that a Mother would say this but I am that Mom. I am the one who watches her baby cry during therapy, sees her struggle when she tries to move, and has watched simple tasks become challenges. I don't know when acceptance will fully set in but I do know that every day I learn more from Maelee than anyone else has ever taught me.
I believe that acceptance will come with time, healing, faith, and prayer. Her birth was traumatic, the first 39 days of her life were completely unbearable, and the past 18 months have been a roller coaster of appointments, therapies, and multiple life long disorders being diagnosed. I will accept it all one day but that does not mean that I do not accept Maelee....please do not get these confused.
I accept Maelee for who she is and all that she will dream to be. I accept that she has cerebral palsy, PLMD, RLS, food allergies, and reflux. I just can't accept that she will never use both sides equally or that we have spent the first 18 months of her life in therapy offices and doctor appointments while every other new mother is getting monthly pictures made or going to the park and play dates. I can not accept that people who love Maelee do not accept her diagnosis, pretend it is not there, or ignore the conversation all together.
Accepting Maelee is accepting everything about her. She is beautiful, has reddish blonde hair, crystal blue eyes, a heart that is so full of love and laughter, sweet soul, cerebral palsy, enjoyes the sunshine, loves to give kisses and hugs, PLMD, lovable in every sense of the word, smart, brilliant, RLS, kind, Mommy's girl, food allergies, funny, reflux, and most of all her heart.....there will never be enough words to describe the fierceness and determination that such a loving and kind heart holds. (this list could go on forever.....) This heart is what makes her who she is!
Finding acceptance one day at a time is the only way to move forward in our life. So tonight as I go to sleep I am overwhelmed and saddened and that is ok. I know that tomorrow I will wake to Maelee's sweet smile, kisses, and her sweet jabber words and it will be alright! One morning I will wake with acceptance, tomorrow might not be that day, but someday will be!
This was just the beginning of a journey for her, a life long journey. Throughout the past few months I have spent many hours reflecting on where we have come and where I dream we go. One of those dreams has always been that Maelee will use both sides equally but unfortunately the more she develops and wants to be more active, the more it becomes apparent this dream won't happen......
Dreams......
I dream she will shake a rattle only in her left hand but I know she will shake both hands together and that is amazing!! I dream that one day she will be able to walk without weakness or muscle fatigue but I know that she will work the rest of her life to keep her mind and muscles working together. I dream that she will learn to scribble and do things with her left hand but I know she will be right handed because of her disability. I dream that she will have no struggles to walk up stairs or kick a ball but I know that this does not come easy for my child.
Reality.....
Maelee will shake a rattle with both hands at the same time.....that's a miracle for her! Maelee will learn how to read her muscles and body and she will know what she needs.....she is a determined little girl. Maelee will draw, scribble, color, and eat with her right hand....she will learn to use her left for assistance. She will walk up stairs and learn to kick a ball....it may not be the way you and I learned and it may take longer but she will do it. Maelee will never use both sides equally.
Letting go of the dreams for that "perfect" child...... While pregnant every woman dreams of that perfect baby, the perfect birth, the perfect child, the perfect life, the baby and family that is the envy of everyone they meet. I am jealous of women who are pregnant the whole 40 weeks, find myself jealous of people with preemies who have no long lasting health complications, and jealous of people who do the "normal" running around from games to dance instead of therapy to therapy session.When something traumatic happens in your life you grieve and in those stages of grief getting to the one of acceptance has been the hardest for me....I would be lying if I said I was fully there. I am not. There are days I am angry, upset, and would trade anything to "fix" Maelee. This may sound crazy that a Mother would say this but I am that Mom. I am the one who watches her baby cry during therapy, sees her struggle when she tries to move, and has watched simple tasks become challenges. I don't know when acceptance will fully set in but I do know that every day I learn more from Maelee than anyone else has ever taught me.
I believe that acceptance will come with time, healing, faith, and prayer. Her birth was traumatic, the first 39 days of her life were completely unbearable, and the past 18 months have been a roller coaster of appointments, therapies, and multiple life long disorders being diagnosed. I will accept it all one day but that does not mean that I do not accept Maelee....please do not get these confused.
I accept Maelee for who she is and all that she will dream to be. I accept that she has cerebral palsy, PLMD, RLS, food allergies, and reflux. I just can't accept that she will never use both sides equally or that we have spent the first 18 months of her life in therapy offices and doctor appointments while every other new mother is getting monthly pictures made or going to the park and play dates. I can not accept that people who love Maelee do not accept her diagnosis, pretend it is not there, or ignore the conversation all together.
Accepting Maelee is accepting everything about her. She is beautiful, has reddish blonde hair, crystal blue eyes, a heart that is so full of love and laughter, sweet soul, cerebral palsy, enjoyes the sunshine, loves to give kisses and hugs, PLMD, lovable in every sense of the word, smart, brilliant, RLS, kind, Mommy's girl, food allergies, funny, reflux, and most of all her heart.....there will never be enough words to describe the fierceness and determination that such a loving and kind heart holds. (this list could go on forever.....) This heart is what makes her who she is!
Finding acceptance one day at a time is the only way to move forward in our life. So tonight as I go to sleep I am overwhelmed and saddened and that is ok. I know that tomorrow I will wake to Maelee's sweet smile, kisses, and her sweet jabber words and it will be alright! One morning I will wake with acceptance, tomorrow might not be that day, but someday will be!
Tuesday, March 12, 2013
Look into my eyes, Look into my child's eyes
Dear Evaluator/Physician/Nurse/Therapist-
I know you have your fancy forms with the bubbles, boxes, scales, and numbers that we are expected to fill out and answer accordingly. But what I would like to tell you is that rating MY CHILD by the boxes, scales, numbers you have assigned is not working for me. When you spend 15-30 minutes with my daughter and all of the sudden you know exactly what she needs and will excel with.....without taking a moment to get my input on our day, her life, the past, or where we are medically and what the future we dream of holds. My child is more than answers on a piece of paper. She is more than developmental milestones that you consider "average" or "normal". My daughter is someone I will always know more about than you.......so please listen when I say this:
I do not care what your boxes say or what percentage my daughter falls in. I do not care if she fits what you think is "average" or "normal". You see what you don't understand is that "average" and "normal" are horrible ways to characterize anyone.Please don't tell me to watch and wait so we can reevaluate in the months to come......I am a proactive parent so that answer just won't do. I will fight every second of every day until you listen to me. I am her parent and advocate and will get her the help and services she needs. You don't have to always agree 100% but what I need from you is support and understand that you do NOT know MY CHILD better than me!
Maelee is her name in case you were wondering. She is not just an insurance plan, a copay, money in your pocket. She is my daughter and we know what she is capable of, we see the frustration daily, and we are fighting for her.
I understand the system is flooded with special needs children and your time is precious. I respect all that you do and that you have devoted your life to helping others. But what I can't understand is why you won't help my child without a fight. For once I want a straight answer. Maelee has mild CP....I understand mild is in that diagnosis. But if you won't help then who will, she will fall through the cracks and I refuse to let that happen. I will sell everything we have, drive anywhere we need to go, but all I am asking is that someone takes their eyes off the paper and really looks at my child. Spend a moment with Maelee. There is no greater gift then meeting our angel! Listening to her try to talk, watching her move, and seeing the pure joy she has to offer.
Please know that I will continue to call, ask for meetings, and come to you with ideas on ways to help my sweet child. I just wish you would come to me and look me in the eyes and tell me you want to help me help my child......no pushing, no fighting for her, just honest help from someone who sees the desire this Momma has to give her baby every opportunity this life has to offer.
So the next time you are evaluating someone please remember to not only look into that precious child's eyes and see what they are really about, look into the caregivers as well. Those eyes have a story you can't imagine and they will tell so much in a short time. They will ask for help quicker than any words, those eyes will show you just how pure and honest their requests are. Understanding where someone comes from is not always easy but taking a moment to really look into their eyes only takes a moment and you can see what matters most to them....THEIR CHILD.
Sincerely,
A Momma who's eyes speak of compassion, care, fight, love, hurt, fear, anger, dedication, stress, but most of all my eyes are filled with Maelee.
I know you have your fancy forms with the bubbles, boxes, scales, and numbers that we are expected to fill out and answer accordingly. But what I would like to tell you is that rating MY CHILD by the boxes, scales, numbers you have assigned is not working for me. When you spend 15-30 minutes with my daughter and all of the sudden you know exactly what she needs and will excel with.....without taking a moment to get my input on our day, her life, the past, or where we are medically and what the future we dream of holds. My child is more than answers on a piece of paper. She is more than developmental milestones that you consider "average" or "normal". My daughter is someone I will always know more about than you.......so please listen when I say this:
I do not care what your boxes say or what percentage my daughter falls in. I do not care if she fits what you think is "average" or "normal". You see what you don't understand is that "average" and "normal" are horrible ways to characterize anyone.Please don't tell me to watch and wait so we can reevaluate in the months to come......I am a proactive parent so that answer just won't do. I will fight every second of every day until you listen to me. I am her parent and advocate and will get her the help and services she needs. You don't have to always agree 100% but what I need from you is support and understand that you do NOT know MY CHILD better than me!
Maelee is her name in case you were wondering. She is not just an insurance plan, a copay, money in your pocket. She is my daughter and we know what she is capable of, we see the frustration daily, and we are fighting for her.
I understand the system is flooded with special needs children and your time is precious. I respect all that you do and that you have devoted your life to helping others. But what I can't understand is why you won't help my child without a fight. For once I want a straight answer. Maelee has mild CP....I understand mild is in that diagnosis. But if you won't help then who will, she will fall through the cracks and I refuse to let that happen. I will sell everything we have, drive anywhere we need to go, but all I am asking is that someone takes their eyes off the paper and really looks at my child. Spend a moment with Maelee. There is no greater gift then meeting our angel! Listening to her try to talk, watching her move, and seeing the pure joy she has to offer.
Please know that I will continue to call, ask for meetings, and come to you with ideas on ways to help my sweet child. I just wish you would come to me and look me in the eyes and tell me you want to help me help my child......no pushing, no fighting for her, just honest help from someone who sees the desire this Momma has to give her baby every opportunity this life has to offer.
So the next time you are evaluating someone please remember to not only look into that precious child's eyes and see what they are really about, look into the caregivers as well. Those eyes have a story you can't imagine and they will tell so much in a short time. They will ask for help quicker than any words, those eyes will show you just how pure and honest their requests are. Understanding where someone comes from is not always easy but taking a moment to really look into their eyes only takes a moment and you can see what matters most to them....THEIR CHILD.
Sincerely,
A Momma who's eyes speak of compassion, care, fight, love, hurt, fear, anger, dedication, stress, but most of all my eyes are filled with Maelee.
Monday, March 11, 2013
I am the face of Cerebral Palsy!
We spread Awareness......
We hope to send more letters and wristbands next year! Below is the letter we enclosed with the wristbands! Help us spread awareness not only in March but all year for this disorder that affects so many lives!
I
am the face of Cerebral Palsy. I have Mild Left Hemiplegic Cerebral Palsy. It
is a disorder and there is no cure!
My
name is Maelee Adams. I was diagnosed with CP
when
I was 10 months old.
There are many types of CP and it affects everyone differently. Some people have spasticity (stiff
muscles), dyskinesia
(uncontrollable movements, or ataxia (poor balance
and coordination). Spastic
CP is the most common
type and affects 80% of the people diagnosed, this
is the type that I have
CP can affect your arms, legs, one arm, one leg, or every limb
you have. I have left Hemiplegia, that means my left arm and left leg are the
affected ones. We don’t know how this will affect my future but we do know that
therapy is the best treatment possible. I participate in occupational therapy,
physical therapy, speech therapy, and play therapy once a week to allow for the
best movement and coordination of my body. I have been fitted for SMO braces
for my ankles to help me continue to do my best, currently falling is a
frequent event and my poor Momma can’t watch my face go splat on the concrete
anymore.
Not everyone who has CP uses a wheelchair, not all have
noticeable problems but each has many challenges to over come and it is not an
easy task. Many days I am so tired that I just don’t want to move anymore.
There are days I would rather crawl than walk. There are days when I fight
doing anything I am supposed to, even though I know it will help me. I am
tired. My muscles get tired. I get muscle spasms and it hurts.
There are many causes/risk factors of CP: low birth weight,
premature birth, multiples, infection during pregnancy/birth, jaundice, and
complications. Some people can acquire CP later in life from brain damage
caused from an accident or an infection they obtain. Either way CP is usually caused from brain damage that
happens before birth up to the first 3-5 years of life. I do not know the exact
cause of my CP, I know I was born with risk factors and then later
diagnosed. It drives my Mom crazy
to not know why this happened. But I keep showing her it doesn’t matter why,
just that I am ok! J
CP affects over 800,000 Americans and 17 million people
worldwide. This is a large statistic and I am apart of it. Please help spread awareness and visit reachingforthestars.org
to see how you can help today!
With Love,
Maelee Adams
Sunday, March 3, 2013
18 months.....1 1/2 years......Wait and see!
Maelee is 18 months today!!! 1 1/2 years!!!
I can't even believe how fast time has gone! She is becoming this amazing little girl every day who loves her babies, anything princess, and wants her Momma every second of the day. We have celebrated every small step, every milestone, every second so much that Maelee now claps for everyone and everything.....even when it's not required! :) She feels praise is as important as we do!
But with all this celebrating and excitement I can't help but find myself a little overwhelmed that we are at the half way point.......
3.....3 is the age we were given to try and get her development where is needed to be. 3 is where 30% of children with mild CP do not have many noticeable characteristics anymore. 3 is when their little brains turn off from this great development land and we have to pack it all in before then. 3 is when early intervention ends. 3.....is only 18 months from now....1 1/2 years.......
Maelee is adding speech therapy to her weekly regimen this week and with that we will hopefully figure out what this "Maelee language" is all about! I absolutely love her babbles but her frustration is just so pitiful when she needs something. As her Momma I should know, I should be able to figure it out, and all I can do is smile and say "Oh really?" because I have absolutely no clue what she is talking about 98% of the time.
Maelee was fitted for SMO braces for her ankles. These past 2 weeks she has gone face and head first into concrete, cement, and really anything hard you can think of. Her PT said it best, "The more she is trying to do the more apparent her weakness is becoming". I hadn't really thought of it like that until it was said out loud but that is 100% correct....Maelee wants to run, climb, and do all the other crazy toddler things.....and I'm sure she would love to do them without her face planted on the floor! The saddest part is that she does not feel pain the way you or I do, for her to cry she has to hit really hard. There are times when I see her scratched, bruised, or standing with her fingers stuck in a drawer and most children would be screaming but not our Maelee. She smiles the majority of the time even when I would be crying. It is sad. I worry she will get hurt seriously one day. We are hoping these braces will help provide the stabilization she is needing and help align her feet/legs the correct way.
March marks one year since Maelee began her journey with PT and OT. I am amazed everyday as I look back and see how far she has come. Some days are hard and I know she is tired but she is a fighter. I would be lying if I said how much I enjoyed the running.....There are many times I would love nothing more than to stay home with my sweet Maelee and have a "typical" day. But this is our "Normal" life and after a year it's just what we do. Monday-Friday have become filled with appointments, school, play therapy, OT, PT, now ST, kindermusik, and the occasional lunch out if we can squeeze it in! :) It's exhausting and overwhelming but when I look back on photos of Maelee it is all worth it. She is my child and there is nothing I wouldn't do for her!
Maelee was not able to place feet flat on floor at the beginning or use her left side without cues.....a huge sign something was not right.
We have been blessed with an amazing group of therapists who have helped along the way. Our PT has been the same since last March when therapy began and I am so thankful to have her in Maelee's life. :)
Just Wait and See what this little girl will achieve!!!!
Labels:
Cerebral Palsy,
Faith,
Joy,
Special Needs,
Therapy
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