Preferred Qualifications

It's about 8:15 on a Thursday evening and I finally get to sit down. I listen. I hear nothing. I look down to find that I still have my nametag and my suit jacket on; time to get on my jammies and go to bed. Yes, I said it was only 8:15. Three hours before...

I ended my work day at 5pm and realized I had to go to Hobby Lobby to pick up crafts for us to do in Riley's therapy tonight. We have a new therapist (long story) and she is on her game when it comes to doing crafts, reading and cooking during therapy. We use most of our language when actually doing things so we are learning as we do. sounds good to me.

I have to hurry because therapy is at 6:30 and I live 40 minutes from work. I get home around 6pm and have to get the kids fed. Thursdays are usually a crock pot day (thank god for that thing) so its already to go when I get home. We have 20 minutes to get food on plates, feed the baby Emmy and get ready for therapy. I eat standing up because I have to get all the baking supplies, open all the craft materials and get her seat ready for Barb (our online therapist).

6:20 hits and its go time. By the time I have everything ready to go, I get the email from Barb wanting us to sign in on the computer; she is all set. While Josh is still cleaning up and scrubbing off the crock pot, we start our therapy.

Thirty minutes may not seem like a long time in your eyes, but keeping a toddler occupied and engaged for that long is an eternity. We are making a pom pom Christmas tree and glitter water shaker. The pom pom tree went over great; she loved it. She said more, push, on and tree....Yay! The glitter shaker, not so much. She didn't like the fact that the glitter was messy and going everywhere; we had a toddler melt down. Yup, right in the middle of therapy.

Cookies! Were are the baking supplies; she loves to make cookies. As soon as she saw the sugar her face lit up and she was ready to go. She said pour, stir, more and mix...cookies for the win! By the time they are in my Kitchen Aid mixer (another one of my prize possessions) 30 minutes is over and she is heading for bath.

Tonight is Emmy and Riley bath night so I get E's bath filled up and start taking Riley's clothes off. We are starting the potty training so she sits on the potty for about 15 minutes and just gets enough toilet paper to fill clog the toilet. She loves to wipe. Whatever gets her on it.

If I put Emmy in the bath without Riley the water works and screaming starts. She can not have Em in the bath first- Riley goes first. Okay so we put Riley in, then Em; get her waterproof cochlear implant on....Shit that one is not working. Let's try the other one. Works:) She will hear with one ear in the bath. After bath getting dressed in another story. riley will not wear any "normal" kid two piece pajamas. Not my child, she has to wear sweatpants and a big t-shirt that she picks out. Mommy or daddy can  not pick them out.

Baths are done; time for more therapy. Let's read, play with play dough, and do her TIGGLY on the ipad. Is it 8:00 yet??? Nighttime! Both kids are in bed and all of a sudden it is silent. Time for bed!

It's funny because my career is helping student find jobs; everything within the job search process. I look at resumes, cover letters and job descriptions on a daily basis. I coach students on interviewing and where to find jobs. I tell them to not apply for jobs they aren't qualified for....it makes me think. What are the qualifications of being a mom? Sometimes I wonder if the "preferred qualifications" are more than I can handle. If I had to write a job description for being a mom to my children, it would go something like this:

The Niedzwicki family is currently seeking a caretaker and provider on a full time basis. This position will assist the father in all day to day operations and communication. This person is responsible for the training and care of a toddler and a newborn, age 2 and 7 months.
This role requires an understanding of parenting theories and ability to train on these theories. Assists in the development of budgets, coordinates records and maintains flexibility on a daily basis. This individual must be able to work in a team, organized and have a strong ability to communicate effectively. Patience is a must.

REQUIRED: Must be able to multi task; 3-5 years experience in supervising and or elementary education training.  Must be able to work long hours, overtime and receive little compensation for your efforts. Ability to take harsh criticism and be tired all hours of the day. Working with a diverse staff and able to think of your feet. Experience problem solving and risk taking is key to this position. Valid drivers license. 

PREFERRED: 5-7 years experience in elementary education with experience in a supervisory role. Ability to eat cold foods and not shower alone for 10 years is a must. Ability to think on your feet and be consistent. Computer proficient with knowledge of picture editing. Fort building is kept in this role; must understand the importance of growing personalities. Ability to French braid.  Desired: Budget management experience with flexibility for emergencies. Able to be flexible in a situation you could never dream up yourself. ability to make everything better.

As I love my kids with everything I have, some days I  need a do over. A day  to say "Lets do that one again so I can be better". As moms, we constantly feel we aren't good enough or we are being judged for every little thing our child says and does; Maybe we are the ones judging us. If this were a real job description,  I would never apply because I'm not qualified; in real life this is my full time job. Some days we are moving up the corporate latter, and other days (like Thursdays) we hope we get through the day with both kids fed, dressed, bathed and sleeping in their own bed. If all those things happen then we are doing an okay job!

And Now We Wait...

And now we wait. This time around seems a little bit different then the others; not sure how or why, it just does. Maybe because we know what to expect; we know the ins and outs of the hospital: the nurse will come around every hour and the doctor will be out when Riley is in recovery. Maybe it's because we already have hope. Riley already has one implant working well and progressing as expected.

Maybe it's because we are anxious; i have been waiting for this day since last December and want to move on with our lives. I want her to be able to hear with both ears, not worry about infection and  be her own kind of normal. People ask me how I am. They want to know how I am feeling. I'm feeling calm.

I don't know how to explain it really. Josh and I have two beautiful daughters and are in a great place in our lives. Emerson is 5 months old today and our Riley Mae is in surgery on her way to hearing all the beautiful things in this world- with both ears.

When we got to the hospital this morning, yes at 5:20am, Riley just held on tight. I doubt she can really recall the past surgeries but she definitely knew something was up. She sat there, they took her vitals. She sat there, they went over all her history. When it was time for her to go, she just wanted to get into the Step 2 car and go. Mommy didn't want her to.

So now we wait. Josh sleeps, and I blog. We wait until the nurse comes around again to give us an update. We wait with other families. There a family next to us who's son is having open heart surgery. there are about 30 family member, pop, chips and all kind of snacks. families pulling together when it matters the most; reminds me of Riley's first surgery June 18th 2013.

I may be calm because she is so strong. She's not even two yet and already she is teaching me more than I have taught her. I learn patience from her, I learn to wait. teaching her to learn to listen makes me learn to listen also. She knows what she wants and is not afraid to go for it. I already know this about her at such a young age. She isn't shy. She laughs and tries to do exactly what you do, she loves to imitate (hopefully that is gone by the time she's in high school).

Nurse just came by and told us she's doing great! "Such a strong little girl". It should only be an hour out before she's in recovery. 

I really believe everything happens for a reason, its so cliche I know. Riley was given to us for a reason. We moved to Indiana for a reason and had the opportunity to be part of the the Riley Hospital at IU Health family…for a reason. This place has been awesome to us. It's 2 hours each way from our house but there is no distance I wouldn't drive to give our daughter the best care. Riley Hospital is that. This morning they gave Riley a little doctor set so she could play doctor when they were doing her vitals. Everything they do is for the childs experience; their comfort level.  I hope our journey continues with their support in audiology and speech therapy.

I know she won't remember this experience, but I will. I will always be grateful for the opportunities that she will have because of Riley Hospital and Dr. Yates and his team. Every time I see him it's bitter sweet; we love seeing him, but we wish it was under different circumstances.

I go back to when I first found out Riley was deaf and we were researching hospitals and doctors. We looking at Columbus Children's Hospital and Chicago Children's Hospital. Both have great cochlear implant departments and have great reputation; however when I met Dr. Yates, I knew this was the surgeon that I wanted working on Riley. He's a perfectionist, he cares and the amount of research he does on cochlear implant implantation, activation, and oral speech communication floors me. He works non stop, goes off the Washington DC to meet with other research developers for the cochlear implant. He has three daughters himself; he's a family man. And most of all, the first time she had her surgery, he came out after 9 hours of surgery and said "thank you for letting me take care of your daughter". No thank you Dr. Yates.

In My Daughter's Eyes

In my daughters eyes, I can do no wrong. She looks at me with admiration, with no fear, with the sense that her mommy is the best mommy around. When in reality I struggle. I fear. I don't know what the future holds and that can be scary. But in her eyes everything is perfect.

703 days ago I gave birth to a daughter who was deaf. I think in reality it took me over 1 year to actually say the word deaf instead of hearing loss, or nothing at all. I remember the pain I went through the first 6 months thinking about her future and what opportunities I can give her. Doesn't every parent want this?

In my daughters eyes I know everything. She can come to me and I can fix everything. If she's crying, I know how to calm her. If she's excited, I know why. Lately it's been hard. I read other CI (cochlear implant) parent blogs and they assure me that one day your life begins to feel normal again.. When is that exactly? I still feel unbelievable sadness because I still wait for her to have  a revelation and use spoken language to talk to us. Tell us what she wants; but she doesn't know how. Parenting to me involves therapy, learning to listen sounds, Ling 6, auditory sandwich, conditioned play and everything else that will help with her spoken language. Every book I read, gift I give her, or sound she makes has something to do with her development.

In my daughter's eye she is not different. She doesn't know what the world is like; How people judge and make assumptions based on appearance, monetary things and your successes in life. She doesn't know that she is special. I try to give her every opportunity she can and let her just be a child, but I can't. She is different and the harder I work now, the better her life will be later. Riley doesn't know that everyone doesn't have a CI. Every child she meets she's going to have to explain that she has a CI and that's how she hears. It's my job to teach her to be her own advocate and be proud of who she is.

In my daughter's eyes I am her main teacher. Through her eyes I give more when I want to give up. I break down sometimes and need a break. I shut my door and sit down and take deep breaths. I yell and get frustrated at the progress but yet amazed by her perseverance. I get back up, look at her, and in her eyes realize that she sees no wrong. I realize that we are the main piece in her success. That's not about having a deaf child; its about being a parent.

Through my daughters eyes I am her hero. The steps I take, she will follow. The heartbreak I go through, she will also feel. This makes me put one foot in front of the other and be the best parent I know how to be with the situation we have. In reality, looking through her eyes brings a little bit of me back everyday. I couldn't imagine not being Riley's mommy.

”Being a mother is learning about strengths you didn’t know you had, and dealing with fears you didn’t know existed.” ~Linda Wooten

Pale is the New Pretty

They say I am one of the lucky ones; I caught it early and I should feel really lucky. The truth is, when you hear the word Cancer in any form...it changes you. I've spent my whole summer thinking back, feeling guilty and going through every occurrence in my head. When all of my friends and family are at the pool this summer sunbathing, I was (and still am) getting wide excisions done on my skin. I currently have on 6 inch scar, and 2 other scars with a fourth on the way. Every time I go in, is every time we find something.....

Let me go back...I have always been a sun worshiper; I love the sun. I sun bathed with tanning oil, lotion and even baby oil some days. I took spring break trips, summer vacations and tanned in the tanning beds during the winters. I always loved a sun kissed glow; even though it didn't love me. I remember getting burnt all the time- that was how I could tell I would get tan. I got burnt,  then the tan would come a couple days later. I loved summer...I could lay out all day and read a whole book. Times have changed.

I have always gone to the dermatologist once a year for annual check ups but haven't since we moved to Indiana. I am always healthy, rarely sick and haven't even been to the family doctor in years. Well I noticed a mole on my chest when I was pregnant with Emerson that was unusual. It was getting bigger and darker. When I showed my OB she suggested I go in immediately and get it removed; You don't have to tell me twice. I was able to get in that next week and got it removed...it was what came next that changed my life.

My doctor called me directly and asked me to come in immediately; I knew from that moment it wasn't a good situation. Once he was able to talk to me he told me the mole came back and it wasn't good....it was Melanoma. I swear that is all I heard in the whole conversation. I went numb. Melanoma, cancer? Really? He said we caught it early but the next 5 years will determine my fate. 90% of melanoma stage 1 survivors are alive in 5 years. Okay, what about the other 10%? To think about cancer and not being around for my daughters scared me. It totally freaked me to say the least.

Once I did my excision, they removed a couple more moles. Those came back Displastic (pre cancer); I had to have more excisions on those. I am going on my 4th excision in one month and it doesn't stop there. Every 3 months I have to get a full body exam where I sit on the chair and two of them examine every inch of my body. Melanoma is the most deadly skin cancer killing one person ever hour. They say I'm one of the lucky ones....

This has been a lifestyle change for me. I wear sunscreen, all the time. It's in my moisturizer, my makeup, my lotion, everything. I wear spf clothing and cover up all the time in the sun. I seek shade on all occasions or wear hats it I can't have shade. To say cancer changed my life is an understatement. Most people think Melanoma is "just skin cancer" but they just aren't educated. 1 out of 4 melanoma cases come back, and she attacks hard- goes right for the lymph nodes and organs. Most people wont know it came back without PET scans. Again...I'm one of the lucky ones.

I wouldn't say I feel sad. I don't. I feel mostly guilt. Why didn't I know that tanning caused skin cancer? Why didn't I protect myself in the sun? How could I have been irresponsible with my skin care and now I am paying the ultimate price? It seems like once my family is up and in good spirits, something else comes knocking our way. God only gives you things you can handle...right? I'm beginning to wonder.....

My goal is to educate people. You can still lay out in the sun and be protected; you DO get sun tan through sunscreen. The SPF will just block the harmful rays and the rays that cause aging. Absolutely do NOT go to the tanning bed- use the spray tan if you want to look tan. My future is bright and I plan to be around to see my girls get married; I will not let my love for the sun take over my judgement to take care of myself. I will be pale. Besides look at these celebrities....Pale is the new Pretty!

The Coo Coos

Friendship means so many different things to me and it's hard to explain to some people. Our group of friends have been together since grade school and have cried together when you think you can't take anymore and celebrated life when your life rocks! My girls are the coo coo's- you may remember the Ya Ya sisterhood, well it is very similar to that. These are the sisters that I chose, the ones that know all my fears, lived through my faults and embraced who I am today.


Friendship means standing by your best friend on their wedding day when you know they are following their heart; not necessarily their head. It's driving four hours one way when you best friend gives birth, then picking up and driving back home that same day. It's being the first one at the funeral home when you loose a loved one unexpectedly. Friendship is blasting "Like a Virgin" in college and dancing around your apartment for hours; laughing and making memories.

Friendship is not judging, but understanding. Understanding that we are all different and we don't have to have the same life as everyone else, and we don't want to. It's realizing that you have been friends for 20 years and so proud of the mothers, wives, and women they have become. You treat their children as your own and understand that it's okay for them to have other friends. Friendship is not letting distance make you grow apart, but having a phone date with a glass of wine is just as fun as a girls night out.

The Coo Coo's embrace their imperfections as mothers and women and rely on each other to help them get through life. We laugh until we cry and cry until we are cracking up. Life is short to not laugh at yourself. Friendship is saying your sorry. The Coo Coo's understand my love for the red carpet and know when I need a hug.

Friendship is forgiving before you even know you did something wrong. It's really being there...literally. Knowing that as we get older life gets busy; don't let time be the reason you go weeks without talking. It's calling because you heard a song on the radio or saw something so funny that only your fellow coo coo's would understand.

This past weekend I went back home to Avon Lake and was able to be reunited with these girls. We laughed, we talked and we cried. We went and got best friend tattoos and now are bonded for life! I got to see their children and hang out with their loved ones- everything about last weekend was awesome.

I can only hope that my daughters will have friendships as solid as ours. Ones that aren't scared to tell you the truth, but don't judge you in the meantime. Friendships that celebrate everyone's accomplishments and aren't competitive in nature. Ones that are honest but comforting when they were totally right and you didn't listen. A friendship that is easy; one that doesn't require you to dress a certain way or be in the same economic class. Once they have these type of friendships, a Coo Coo is born!

Birds of a feather flock together....

Cochlear Implant Child

Being a mom of a child with cochlear implants is different. I can't really explain it any other way but just different. Now that I have a hearing child, it makes it even more relavant that my first time as a mom was...different. Ok, ill be honest, it was HORIFYING. Before Riley was able to hear I couldn't soothe her with my voice. She didn't hear the sounds of the television or vacuum cleaner to wake her up. She never turned to sounds or was startled when I walked in the door; this is all stuff I am learning right now with Emerson.

Cochlear implants parents experience different things that eventually seem "normal", whatever that is. Nothing surprises you and you are constantly aware of your surrounding. I have been thinking about how my life is different and thought I would make a list. You know you're a mom of a child with cochlear implants if:

1. You use the word CI more than eat, sleep or bath.
2. calendars do you no justice- I live day by day to make sure everyone (including daycare, grandma and dad) is on the same page with days we have therapy- which is three times per week.
3. You will be amazed by how many times you can say "moo" or "quack" in an hour (200 to be exact).
4. Everything is a teaching moment
5. Troubleshooting a red light is like diagnosing a chronically ill patient
6. you are terrified of plastic slides
7. You are on a first name basis with you audiologist and the company that makes your implant- in our case Advanced Bionic.
8. Fed Ex comes to your house about once a week
9. People stare at you- and your child. It makes you sad but they do.
10. When traveling anywhere, you grab extra cords, batteries, processors and anything else you can find.
11. You constantly fear your child throwing their CI in the toilet- my worst nightmare
12. You hear things- things you never really "heard" before, you hear. Cars driving by can be so exciting to someone who has never heard them
13. When they are sleeping you can be as loud as you want; this is also good for bad storms in the middle of the night.
14. The I love you sign is your family symbol; and we don't even use sign language
15. When someone says "are you deaf" in public, I get nausaus in my stomach
16. Brown Bear is your favorite book you read everynight
17. You dread the day you have to have "the talk" and answer question on why she is different from her sister and everyone else.
18. You know what "Ling 6" and "Learning to Listen" sounds are
19. You can't understand why parents teach their kids the alphabet in the bathtub
20. waterproof CI's are the best thing since sliced bread.
21. You look at your child and still get an overwhelming sadness; you're still not over it.
22. You realize your child's education is your responsibility; not the states or school systems

I sometimes wonder what life would be like if Riley wasn't born deaf or didn't have cochlear implants. The reality is I couldn't really imagine her without it. Its a big part of who she is and who we have become as a family. She will never know any different...and that's okay with us!

She's HERE!

Well two months ago she's here. I have been a really bad blogger and I apologize. It wasn't intentional, it just happened. Now with two babies under two life is pretty crazy amazing. I also have been contemplating what to do with my blog since I now I have to babies. I created this blog as a journey for me, on my road to motherhood, then it became a mom blog and a baby book for Riley, then it became all about riley and her hearing journey; I'm going to keep it to that. There may be some parenting, mommy posts here and there but I want to keep the Mae flowers and focus on her journey. Now more than ever I am so motivated to get her access to sound and developing expressive language.

Now back to Emerson Marie....

She's an angel. Such a gem. A beauty. I can't imagine my life without her already. This experience of motherhood the second time around is just as amazing. The love keeps growing for these girls. I never knew how I could love more than Riley Mae, but I do. It just happens.

Emerson passed her hearing test with flying colors! Thank you jesus. Even though we were totally prepared if she didn't, I thank God she did. Having a baby that is hearing is a whole different experience.

Riley love Emma. She runs up to her if she's crying. She pets her and pats her back. She tries to pick her up if she's crying; until I run up because she might throw her across the room:) I am just so proud of how she has taken to Em. I was nervous about her being jealous but that isn't the case at all. She's going to be the best big sister.

 

 

My heart if complete (for now). I have everything I want right here in my little family. Emerson makes everything better. I can't wait to see them grow and go through all of life's challenges, tribulations and most important memories:)