When I knew I was a mother

I hear a lot of people say they knew they were a mother the moment their child was born, or the first time they got peed on, funny or happy moments like that. I completely agree it was those kind of moments that made me a mother. But the moment I knew was a mother wouldn't come until after I already had 5 children.

Janelle was a tiny little baby when her visual impairment was discovered and I went home and cried. I cried not knowing all the things she would see, and I mourned the things she would not. Turns out she does see pretty well.

At ten months it was clear she was pretty far behind other babies, and she began therapy. I sat through every OT, speech, and vision therapy session and learned everything I could to help her. This is when it started to happen. It was at that time I realized I would dedicate every moment of my life to my children if need be. Yet, I still wouldn't say this is when I knew.

Fast forward a few years to this past spring and summer when Nellie was being poked and prodded by what seemed every doctor in the world. Her asthma became so bad there was a few times I had to carry her into an er because she couldn't walk on her own. This wouldn't seem like a major task, but Janelle is a very large sized toddler. Soon after we got the results from the genetic doctor and I was devastated. It was during this time it hit me.I knew I was a mother.

As soon as the devastation cleared I began to lose myself in research. Yes, some of it was scary to read. In fact a better word is terrifying. To read about the kids who go to sleep and never wake up, the seizures, the multiple other things that could go wrong. My head was spinning for weeks.

One night as I was laying with Janelle fast sleep beside me I looked at her and began to cry. I wished I could take every ounce of her pain, of her frustration, and suffering. I would gladly have taken it twofold just to save her from having to feel it at all. And then she woke up and when she saw me looking at her, she smiled. That was it I knew I was a mother.

As parents we will all have moments when we worry, when we are afraid for our children, but when a mother cradles a child in her arms not knowing if that child will live a full life, what that child's future holds, not knowing how many days, months, years they'll have with their sweet child, well that changes a mother. It makes her stronger, smarter, a fighter. It makes that mothers heart grow five times the size it was before and makes her determined to spend every day making life as beautiful as possible for her child.

I'm not going to say there aren't days I mourn what could have been, what should have been...I do. I break up every time I think of the wedding day she probably will never have, the children she shouldn't have, the life I wished for her the day she was born. But there is one thing I see in her everyday that makes all that hurt go away. I see God through her eyes. I see His love, His mercy, His absolute glory. I wasn't unlucky to have this child, I wasn't being punished, no God blessed me with her! He gave me this special, beautiful child to teach me the ultimate love. And it is the strength I gained from having her that has made some other things in life more bearable.

I KNOW I AM A MOTHER. And in the end that's the greatest gift of all!!

4 years ago

Four years ago a little angel entered my life. I held her tiny 5 Lb. 15 Oz. body in my arms, never realizing how she would turn my whole life upside down. I couldn't know the parade of doctors, specialist, and therapist we'd be seeing so much they became like family. No, what I saw was a blond haired, precious child, who had that sweet fresh baby smell. Sure, I knew something was wrong. I always knew from the day she was born, but I pushed those thoughts away and focused on the little life I'd created. She was and is perfect in every way.
Tomorrow we celebrate Nellie's fourth birthday and so much has happened in the past year. We have the answers we searched for, She starting to express herself, and form real relationships with people. Then there are the things that have never changed. Her smile still lights up my world and washes away all the bad things in life. Getting Nellie cuddles can warm the coldest of days, and when I look at her I know everything is so worth it.
Four year. It's hard to believe that is all it's been since she changed me, made me a better person. It's seemed like a lifetime. I don't know what tomorrow holds and yes, I know the risks, but I pray beyond anything to have another 80 years with her.
My birthday wish for Nellie is that she always keeps her innocence to the bad things in the world. That she never gets down, or allows people to make her feel less than what she is--perfect. Most of all I just want her to keep smiling. Through the pain, through the test, through everything I want her to keep that one thing that lights up my world.
Happy Birthday baby!

The family of 15's

What I dubbed the family of 15's is the mothers, fathers, siblings, ho have a child in the family with an extra 15th chromosome, and of course the children themselves that have this rare duplication. These families have become my support, hope, friends, understanding, and of course love in the past few months. They have all the qualities of a family even if we have never or will never meet in person.
I have cried at the set backs of these families and relished in the triumphs. I know we were all chosen to be a part of these children's lives by God and each others lives. This has brought us all together and for that I am thankful everyday.
In biblical numerology 15 means: deals with the energy that is found within the acts of divine grace.
This is true of all these families!
I know today's blog is short and it's been a while since I posted, but I was inclined to write this while thinking of a friends little boy today. Keep our children in your hearts they are gifts and have so much to offer the world. Look past their delays and see the sunshine that radiates from them :)

Where we stand

I've been so busy lately it's been hard to find time to post. There have been doctor appointments, more tests to set up, and overall chaos. Janelle's speech is improving at rapid rates and as it does her personality is shining through more and more. God is good and has again answered my prayers. I asked to hear her voice and boy has He provided that! With finding her voice Janelle has also found that she can express her dislikes, her anger, and happiness through words. So we are now going through what most people call the terrible twos, but with a nearly 4 year old. My days consist of saying no Nellie, don't put that in your mouth, ewwwww that's gross, Nellie please put your clothes back on, Janelle don't dump that on the floor, you get the picture.
We have also been shocked to hear her tattling. Oh, I thought I would have one daughter who didn't say mooooooooooom, so and so did this, but alas it has happened. Janelle will be yelling mooooooommmmm, Emma took mine. (This means Emma took something from her). Last night she kept saying Nellie no timeout, no sit in chair. I have to assume she was put in time out at school as she wasn't put in time out here. She can spell her name out loud now too, which is amazing to me since my other children were much older when they did this.
Yes, things have been hectic, crazy, and at times very stressful, yet I hear that voice even when she's tattling and the pride wells up in me. She might as well be reciting Emily Dickenson or Charles Dicken's because to me the words coming from her are sweeter than any poem, what she says is more brilliant than the greatest novel ever written. Even if she is only telling me NO!

Just one day

Last night I was talking with a friend I haven't talked to in a while. Life has been getting in the way of phone conversations. I finally let go of everything that has been eating away at me. I am not a brick wall and I am toppling. After 4 years of struggling alone with Nellie's issues, of not allowing anyone to take over any of her care I admitted I need help. For a few minutes I felt like I was failing her. Like I wasn't what I needed to be. I can't go anywhere since no one will babysit Nellie, my life revolves around doctor appointments and I need to get away, just for a little while. I have always felt like if I allowed anyone, even Nellie's father to take over any of her medical stuff they'd mess something up, but it's time.
I had a talk with my mother and she is going to watch Nellie once a month so I can get away. This is going to be a great reprieve for me and I am excited!!! I don't think a lot of people realize what the day to day life is like for a family with a special needs child. It is hectic, busy, crazy, and so wonderful all at the same time. There are more sleepless nights and trips to the ER than most people face in a lifetime. It is our normal. It's our life and perhaps I wouldn't have chosen this life, but I wouldn't change it. I couldn't imagine my world without my Nellie in it.
You may ask what I'm going to do when Nellie goes to stay with my mom for a few hours and the answer is simple. I'm going to take the kids and do something that is hard to do with Nellie. We are going to go to a real restaurant. One with menu's and waiters! One dinner where the kids can sit and talk to us without us having to chase Nellie around the place and try to keep her from yelling. Then when we are done I'm sure I'll be at my mom's to pick her up early because I miss her ;)

I swear I'm not starving you

Regardless of what Janelle believes i am in fact not starving her. Apparently if not given cookies, candy, froasty freezy freezes, she is starving. For the past week I have been on guard at the kitchen door. She has tried to climb under my legs, push me to the side, and if I go to the bathroom she makes a mad dash for the fridge. We were hoping to avoid putting locks on the fridge and cupboards, but alas we have to.
On the plus side since we rid our house of as much high fructose corn syrup as possible Leanna's ADHD is barely noticable!!!! I had to praise her up and down yesterday and tell her how proud I am. May be soon we will be able to say goodbye to Adderall forever!!!!!!
In conclusion if a short girl, with shoulder length, thin brown hair comes knocking at your door saying cookie, don't give it to her! If a short, skinny, dark haired comes knocking feel free to feed her :)

poopy poopy everywhere

nothing like an end of summer stomach bug o put everyone in a grumpy mood. I feel awful, yet have had to clean up after Nellie and Devony for two days now ewwwww. Since Nellie is basically refusing to use the potty this is even nastier. This whole situation has made my head go into the toilet bowel many times now, gotta love the pregnancy sensitive nose.
I'm so ready for this bug to be gone. I'd say I'm so ready for school to start, but that just brings on another vicious cycle of viruses and germs. Sometimes I feel like I am fighting a never ending battle. Like the germs hide in a corner, wait for me to give the all clear, that our house is illness free, and they form their attack plan. Yes, I see them there snickering at me when I feel like it's okay to relax.
Alright, I better end this blog and arm myself with the can of Lysol spray and paper towels. Everyone wish me luck, if you haven't heard from me in a few weeks the germs won!

Nellie VS the fair.....Nellie won!!!!!!

Yes, I think we very well may have hit the terrible two's, two years late! We decided to take all of the kids to the fair yesterday. People would think it difficult to take 6 kids anywhere, but our kids behave fairly well in public. Anyway Janelle usually enjoys such things, not yesterday!
I'm not sure if it was a case of sensory overload, crankiness or what, but Nell's did not enjoy the fair. Okay, she liked it as long as she was getting her own way. All she wanted to do was ride rides and she had an hour fit about ponies until we finally found them. She had no interest in the animal shows, or just about anything else. Should have seen what happened when she wasn't able to ride a slide cause she was too short. Oh my goodness Nellie went hysterical!

We ended up leaving early, but had been there 6 hours so we were all tired anyway. In the end though, it was worth it just to see her smile the few times she did. 

No parent is alone!!!!

Since I started this blog and have gone down the path of a mother with a disabled child I realized how many parents there are who live like I do. Their lives revolve around fighting for their children, learning, and struggling daily to keep these kids safe, and cared for. Each child is different, each family, and case is different, yet we are one. We are one community of parents who know pain, struggles, disappointment, fear, and wonder. We have felt the devastation of hearing our children are not "normal". I use quotes because one person idea of normal isn't another persons.
Though one mother may struggle with a child who needs feeding tubes another may have to deal with immobility. Does this make the daily struggles different, maybe a little, but in the end these mothers understand each other.
I have dubbed mothers of disabled children multi-abled parents. We have a different language than most other parents. We can talk in numbers, codes, and medical terms. We have a vast knowledge of medicines, surgeries, the best and worst hospitals and doctors. We have a different schedule than most other people. We run on doctor time. This means we are on call 24/7 and can drop anything at any sign of an emergency and stay cool while dealing with it. We are fighters for justice more than any senator or even president. We are willing and able to take on anyone to make sure our children get what they need and their rights are not violated.
In the end what do we get for this life? There is no day set aside for multi-abled mom's. We don't have an awards ceremony, or movies or books made about us. No, what we get is greater than all of these things. We get the love of our children, the joy of knowing we make a difference and most of all we get to belong to a great community of other multi-abled parents who we can share our joy, love, and accomplishments with.
I have enjoyed meeting all of my multi-abled parent superhero friends. You are all a part of me now as are your children. Know that as you would band together for me I will always do the same in return. You all rock!!

The last week of school

The last week of Nellie's summer session is upon us. She loves school so much and her teacher as well. I'm sure until the fall session starts she's going to be walking around asking why the bus isn't here (I think she has an internal clock that tells her when it's supposed to be here). Thankfully we have a lot planned between then and now and she'll be entertained fully. Still I know each time we pass a bus she'll wonder why she isn't getting on it!

Yo Gabba Gabba Live is on my monkey butt list!!!!!

That's right I have a monkey butt list for bad things and Yo Gabba Gabba Live just made it onto said list. On August 5th I wrote this letter to Yo Gabba Gabba:

I have a few questions about the live show. How is the visibility? And how far from stage would a visually impaired person have to be to see the characters? We are hoping to take our disabled daughter to the show in Lewiston, NY, but this is a big expense and we have to be sure she'll be able to see. It will kill her to go and not see her favorite characters! This will be a great reprieve for her from all the doctors and tests!!! Please let me know so we can order our tickets in a good area as soon as possible. Thank you so much for your time and for creating a show that my daughter loves!

Stephanie Barmann

Today is August 15th and no response!!! Not even an email back to say I have to ask so and so etc. Ten days is plenty of time in which to expect a response and considering the show is September 7th there isn't a whole lot of time to get tickets in an appropriate area for the show.

Of course what do I expect from a Nick television show? We can make sure there are characters of all races, religions etc., but what about the disabled children? Where are the children with autism, the children who are blind, deaf? Oh, I know the general population doesn't want to see the disabled is that it? I bet a major portion of Nick Jr. viewers have disabilities of some sort ADHD, vision, hearing, autism etc.

I am saddened to have not had an answer as my daughter really does love the show and from now on it will NEVER be put on my television again!!!! I know Disney on Ice and similar children's live shows do make arrangements for the visually impaired and handicapped. Again though we go back to Nick. In my opinion it's all about the money isn't it? Let's look at the cost to see Yo Gaba Gaba live:

$105.00 for a meet and greet party with Yo Gabba Gabba (mom, dad, child= $315) Hummm why do I have a feeling hundreds will be at said party?

regular tickets $35 (mom dad, child $105)

$105 is a lot of money for a show my daughter may not be able to see without the right seating and then throw a screaming fit when she can't view her "friend" characters!

Good job Nick for making people believe you care when in fact like everything else in today's world you are out for the money!!!!!

Good luck with Yo Gaba Gaba Live Nick. I'm sure you could care less about losing my families $105 ( make that $140 cause we would have brought baby and Lord knows they would have made us pay for a ticket for an infant too!) Just know that one day parents will become wise and as for me I already have and am hoping my cable company can get rid of the channel completely!!!!

Nellie's party

Okay it wasn't really Nellie's party but she thought it was. It was my husbands company picnic and Nellie loved it!!!! We couldn't keep her out of the bounce house and she let us paint her face. This was huge because of her sensory issues. Sara held her hand as the woman did it and she only did a quick heart, but still every little step forward counts! I had to share the pic as she actually looks pretty happy about it!

Nellie is so loved

Today I wanted to talk about our home life with Nellie. Many people would assume since Nellie is so high needs the other children get pushed to the wayside. So, not true. In fact the other kids spend so much time with Nellie if anything I get pushed to the wayside! So here is a run down of Nellie's siblings and how she interacts with them:
David- He's the funny guy. A classic big brother he is very protective and Nell's loves to irritate him as much as possible. Usually he laughs, but I know when she jumps on him it has to hurt!!!!!
Sara- Our little mother hen. She will answer to each of Nellie's beck and calls. She will be the first one to Nellie if she falls and gets hurt, or to yell at me if Nellie needs something and I don't move fast enough.
Leanna- Her and Nellie have a very special bond that goes beyond sisterhood. I know deep down they have a connection I'll never fully understand. There is a love there that is impossible to put into words.
Emma- Sometimes I wonder if Emma truly realizes that Nellie is disabled. She plays with her as if she were any other of her siblings. She gets angry with Nellie for breaking something and laughs at Nellie when she's silly.
Devony- At first Nellie wanted nothing to do with her baby sister. The first thing he said about her was: No, no, mommy no touch it. Now she gets a kick out of the fact Devony thinks she's the funniest thing since Rip Torn! She also likes to sneak the baby foods she can not have, another reason I think Devony adores her.
The new baby- I'm not sure Nellie understands there is a baby in mommy's tummy. I asked her if she wanted a new baby sister or brother and she flat out said no, no baby so we shall see!!!!!!
Our house is often full of chaos and laughter. There are moments when I want to hide, but it's in those moments someone does something to make me laugh. If there's one thing I know for sure our children as much as they fight will one day be very close and Nellie will never be lacking for one thing, the most important thing...LOVE!!!!

How hard it is to hear her cry

It is gut wrenching to hear my child scream for food. Yesterday we started to change our eating habits and Nellie is not taking to it. She spotted lunch meat in the fridge and collapsed to the floor in a fit until I threw it out, after all out of sight out of mind. Then the cheese ball fiasco (as it will always be known in my house) began. She saw them on the very top shelf (pretty impressive with a visual impairment) and for over an hour I heard...But mommy cheese balls, cheeeeeesssssssseeeeeee balllllllllsssssss, blended with sobbing and tears. Once it came time for bed she finally calmed, but I swear in the middle of the night echos of the words cheese balls were still floating through the air.
I know she had enough to eat and starvation was in fact not happening, but still it was difficult to know in her mind she was still very hungry. This is going to take some getting used to and hopefully soon she will understand or at the least get used to our new lifestyle!
Oh, and as for the cheese balls they met the same fate as the lunch meat somewhere a pack of sea galls are having a feast of ham and cheese balls thanking me for the changes in my home.

Metabolic????? WHAT?????

Yes this is what I said to the doctor when he said he believed this is what she has. In fact he believes it so much he has us changing our lifestyles and talked to me for over 45 minutes about this condition! I had began to take the blame for my child's weight, thinking I was feeding her to death or as the genetic doc put it she had a condition known as "motherly love". Wow what a relief to hear her body is just a little off. Still if I allow it to continue it is my fault, therefore big changes are coming to this house hold. I am in search of fridge and cupboard locks. Yes, I know if a few weeks my children will be screaming Attica and claiming to be starving and begging for the treats they have grown accustom to...but no more!!!
I explained to the children how our household will be run from here on out, at least when  it comes to the kitchen. No more pizza, good bye McDonald's ours has been a long relationship, so long High fructose syrup you will be missed, so long to everything that will cause my sweet Nellie to grow bigger and unhealthier.
I want to share a little background on Nellie's weight problem. From birth to the age of 2 1/2 she was under weight. She was always sizes behind her peers and pounds behind them too. She had been diagnosed as a baby with a feeding delay and would not eat solid foods. For a long time milk was her major meals. All of the sudden though something changed she began gaining and eating.
This was a vicious cycle that happened so quickly I didn't notice at first. People began to comment about how fat she was getting. My mother would tell me I had to do something with this weight problem as she handed Nellie a cookie. I will from here on out thwart all attempts at sneaking Nell's a treat. I am putting a sign on the door announcing if you have food with you turn around and leave. Her siblings had everything explained to them and understand that yes they are normal weights, but they too must help out and not eat goodies in front of Nell's. They must eat them outside. We do have one child who is extremely underweight and needs the extra calories. This will be interesting to say the least!
I'm hoping in a few months we will see a huge difference in all of us! So watch out healthy lifestyle here we come!
                                                        Nellie 4th of July 2009 24 Pounds

Nellie 4th of July 2010 60 Pounds

Amazing!!!!!!!! Prayers are answered

I laugh now thinking how nervous I was for this doctor appointment today. I hate having to hear about how delayed Nellie is and every time we would go I was reminded my child has autism....Guess what.....SHE DOESN'T!!!!!
If ever I have had an affirmation of God today is that day. Again God stepped in and said who is the ultimate doctor here? I have been praying until I could think of nothing or no one left to pray for for weeks. Every time I look at my children I ask God again to help me and He has, oh how He has. A month ago Nellie was put onto the spectrum today she was taken back off. The doctor said with the improvements she's made alone in this small amount of time he had to take her off! Yes she does score in their "tests" as being in the spectrum, but he says shes not. It's truly amazing. And if I sound like I am babbling during this blog I am!! I am giddy, joyful, feeling very blessed right now, so many emotions I can't put them all into words.
Yes, the doctor says this may change in 6 months when she goes back and it may take years before we know for sure if she will be put back on the spectrum, but like I've said me and the Lord, we got an understanding.
Is Janelle better, no not at all, but each good test, good result is one step closer to that point. He also feels she has a few other conditions that will have to be looked into, but you know what I'll stick to my happy little world right now and worry about those things tomorrow. In the words of Scarlett O'Hara after all tomorrow is another day.
All I have left to say is Praise God, you are mighty in your glory and power to heal!!!!!!! I thank Him for blessing me, a sinner and hearing my cries. God You are good, and forever I will be Your servant!

Some days I don't feel like writing this

There are some days when I just feel down. I know I always come across as happy and upbeat so today I will share with you what stinks! The things that really get to me. Maybe I am writing this since we have an appointment with the developmental ped today and I always dread those appointments. So here's my list:
It stinks when people look at us funny when we are in public! Seriously one can tell Janelle is disabled why stare at me like I have this out of control child who talks loudly and screams indoors!
It stinks that I watch my child go through so much and struggle daily.
It really stinks that I have more medical knowledge than most first year med students! Okay this may not be all that bad.
It stinks that my older children can recite a list of their sisters medical problems because I taught them in case of emergencies!
Okay that's a shortened list. To be honest my list of things I adore is longer, but on days like today it's harder to see those things. Like a dark cloud has blocked them from view. It's on these days when I want to go hide, but I can't Nellie needs me. Right now she is still sleep and I went in and gazed at her peaceful face. When she's asleep you'd never know there was a thing wrong with her and I like to think when she's asleep in her dreams she can do all the things everyone else can. That she is in a happy little world where she don't need doctors, tests, therapies. You know I think I'm gonna end this early today and go join her for some cuddle time :)

Wow Nellie's been around the world!!!!!!!!!!

At least virtually! I am again humbled and amazed at how many follow her story. Here's a list of the countries where people follow Nellie's story:
United States
Canada 
China 
United Kingdom 
Ireland 
Australia 
Denmark 
Germany 
Luxembourg  (I know who this is NATACHA)
Mexico

Thank you all!!!!

Waiting for the bus

I absolutely love waiting for the bus with Nellie. It gives us a chance to be alone and just hang out. I am amazed as I sit and just watch her. Everything seems so fresh and new to her, like seeing everything for the first time. We do spend a lot of time outside, yet when the other kids are out there with us Nell's is often on the run with her siblings. Not o in the morning, she is calm, relaxed, and just seems to enjoy our special moments together.
She picks flowers and looks at them so closely as if memorizing every detail before handing them to me. She chases the neighbors cats, asks about the missing tree for the thousandth time, or just stares up at the sky. Rain is often a bonus as we stand on the porch and she watches the puddles form on the ground.
I can see the beauty of everything I tend to overlook when Nellie points it out. A slight color difference in the flowers, The metal banister she traces with her fingers.
She's like a baby that is learning of the world still. Her wonder and excitement fills me with the same emotions. I have been known to get on my hands and knees with her and trail an ant across the sidewalk, to chase a butterfly across the grass, and even to squirt a hose just right to create a rainbow.
I have no desire to see the pyramids, grand canyon, or the deserts of Africa. I have all the wonder I need right here in Nellie's eyes.

Did I hear you right, Nellie?

Something amazing has happened!!!! Truly, truly amazing! Nellie is talking. I don't mean just words she's been saying words for a long time, but full sentences that make complete sense! Praise God I understand her!
It started when Nick Jr. went out the other day and she said Mommy, you have to fix this. Today while waiting for the bus she says Mommy, what happened to my tree? (the city cut it down). I said the tree went to Heaven with Grandpa. She says: Well lets go see it lol. This has been going on for three days! It's funny because she repeats the sentences three times and I am as excited the third time she says it than the first. I understand she could regress again, but I pray she don't. Her words are so clear and her meaning is getting across.
This all may seem so silly to get excited about, but for four years I have waited to see a glimpse of what my baby is thinking, to understand the things she tries to tell me. I'll take one or two sentences a day with more joy than if she were reciting physics!!!
I know now for sure God heard me Sunday. He knew I needed to see a miracle and did He ever provide me with one! I know this is a sign from Him that yes everything is going to be just fine!