Friday, September 23, 2016

Spotlight Revisited || Aroush

Hi readers! Miggy here. Since I don't have a new spotlight today I'd like to pull one from the archives to feature again. As you'll see this one felt rather personal to me as Aroush is a little girl who also has limb differences. Also, this is one of the few spotlights featuring a family from a distant country--Pakistan. I was excited to ask questions not only about Aroush and her family, but what life was like for a person with a disability in a country that I know so little about. As you'll see Balqees, Aroush's mom, explains that they have a lot of the same concerns that most parents have but that she worries quite a bit about Arhous getting an education since they don't have access to prosthetics. Anyway, take a read and have a great weekend. XO Miggy Original spotlight can be seen here


Hi Miggy, thank you very much for having me in your blog. Though my English is not that strong but I will try to express all my views and experiences in a good way.  If you find mistake, please do correct it.  My name is Balqees and I am married to a lovely man Naseer Khan.  He is a mechanical expert. We have been married for almost 12 years and have 3 sons and a beautiful daughter.  All my three sons were born normal but my daughter Aroush Fatima was born missing her right arm and both legs above the knees.  The doctors said nothing during my pregnancy despite of having ultrasound for three times.  After her birth, the doctors were not able to know why this happened?  But we are very thankful to our GOD for giving us such a beautiful and healthy baby.

***************

Miggy:  Hi Balqees!  You emailed me a while ago about your daughter who also has limb differences.  She's beautiful!  Can you take me back to the day you knew your daughter would have limb differences?  Did you find out at her birth or before?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Balqees:  Well, when I got the news of expecting for the fourth time, I was very worried because we didn't want another baby, frankly speaking.  I was not ready for another pregnancy because of some serious health issues like blood pressure and obesity.  I wanted to lose all those pounds which I got in all previous pregnancies.  But it was GOD's will to give us another baby.  I did have ultrasound in fifth month but the doctor told me nothing serious.  I would say my pregnancy was going well except having one issue and that was my high blood pressure.  On my expected delivery date, we went to the hospital, the doctor got worried after checkup as she said you have still high BP and it would be dangerous to have a normal delivery.  She said I should get ready for C-section.  It was shocking news for both of us because I had a history of normal deliveries, why this time a C-section?  Anyway she gave me one hour to get myself ready for C-section.  And the time came to get ready for a major operation for the first time in my life.  I kept myself normal to get anesthesia.  

After 45 minutes I came into senses and the doctor was having a good news that GOD has given me a beautiful baby girl (I had a great desire of having a daughter). When I got shifted to my room, my husband and my mother in law (the baby was in her arms) were waiting to see me.  I wanted to have my baby but my husband said wait and listen to me. I looked at him and said what? I could see grief and anxiety on his face. He said we are very lucky to have a pretty baby girl this time but there is a problem with our baby. She is missing three limbs. Oh no! What are you talking about? I don’t believe this! How could this happen to us? I got my baby in my arms and checked all her limbs.  What is this? He was right. I cried and cried for hours. But nothing could change the fact of my life.  My husband tried to console me and said we have to accept this fact as it was a will of GOD.  She was very beautiful and had curly hair.  She is almost four now and very intelligent and energetic.  She wants to walk like other kids but unfortunately she still has no prosthetics for walking.  She just has prosthetics like long shoes for standing only.  She is really a blessing for us.  We treat her like normal children.  Her brothers love her and always very caring to her.


Miggy:  You live in Pakistan and have explained to me that since it's a developing country you don't have access to the same technology we have in the United States.  Have you been able to get your daughter the medical attention she needs?  I'm also curious how people with disabilities are treated in Pakistan.  Is he generally treated with kindness or are people with disabilities treated differently by society?  Of course there is ignorance and unkindness everywhere, I'm just curious as to what your general experiences are. 

Balqees:  Miggy, we have a literacy rate of above 30% only. So the people here are not exactly aware of rights of people with disabilities. As far as my daughter is concerned, people have a lot of questions in their mind when they notice her. They feel sorry for such a beautiful girl. But generally, people treat her with kindness and pray for us. People show their love and affection for her and I am very thankful to them. Only one thing worries me is her education and her future. I want her to go to school but we don’t want to send her to school without prosthesis. And the experts here say she would be able to wear prosthesis at the age of 6 or 7, which is quiet late. There is no such advanced technology for arm and leg prosthetics here in my country.


Miggy:  Explain how Aroush’s needs affect your day-to-day life?  

Balqees:  Well Aroush is very energetic. She wants to do her work by herself. She crawls with the help of her only hand quiet well.  But she has a strong desire to walk like other kids.  She wants to go to swim with her brothers and that is a big problem for her.  We as parents try to overcome these problems but you know she is quite young to understand all this.  We just want to see her walking and so does she.  Sometimes she get irritated for not going and running out for play like her brothers which worries me a lot.  But I know she will walk and run one day.


Miggy:  What are the biggest worries you face for Aroush?

Balqees:  My biggest worries are, as I mentioned before, the lack of prosthetic technology here in my country. And apart from that I am worried about her education and future life. I want her to get proper education and achieve something in her life. I want her to be independent and do her work without any assistance and help in her later life when we wont be with her.

Miggy:  How can people best approach or respond to your daughter?  Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Balqees:  Thank GOD we don’t face people asking a lot of questions about her. When they see her, just ask what happened to her?  Is she disabled by birth? My answer is yes and that’s all.  I try to discourage people asking questions in front of Aroush as sometimes she gets scared.  In some situations, I request people not to ask such odd questions in front of her.  Anyhow, people are very loving and kind to her in general.


Miggy:  I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your daughter? 

Balqees: O yes, all my kids are very loving and caring to her.  They really love her, especially my elder son. She is very much attached to her elder brother. My second son used to ask about her legs and arm when he was young, that why she is not having an arm and legs like us? But now he is 8 years and understands her problems very well. I am grateful to my GOD for having such loving children.



Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?

Balqees: Well I’ve learned a lot from my daughter's life. I realize now how people with disabilities need our attention and our affection. We should encourage them to live a normal life and should not isolate them from our life. God chose us to grow a baby with limb differences and God would be right in His decision, no doubt.  But I always pray to God to give us strength, health and long life to take care of Aroush Fatima. She is a precious Gift from God.  

***************

Yes Balqees, she is definitely a precious gift from God. Thank you so much for sharing your beautiful family, and especially Aroush, with us today. She is lucky to have such loving parents and 3 wonderful, BIG brothers!  Like you, I know what it's like to watch your child want more than anything to walk and run like other kids--sometimes it can be really hard. Like you, I also know that one day it will happen. And most days, that is enough.  :)  Thanks again for sharing your story and your beautiful family.  Please give those sweet children a hug from me.  

As always if you or anyone you know would like to participate in the special needs spotlight series please email me at thislittlemiggy at gmail dot com.  



Have a great weekend!  

Tuesday, September 20, 2016

Make: Simple Linen Apron with Grommets and Leather Detail

Simple Linen Apron || This Little Miggy
Fact: I love aprons. I started collecting them shortly before I got married but over time my tastes have changed. I used to gravitate towards frilly, brightly colored aprons with ruffles and crazy prints. Lately I've been wanting a much more simple apron in a solid, neutral color. And in my head there were also brass grommets and leather trim.

I love it when a project turns out as good or even better than you imagined. That's how it happened with this apron--which is such a satisfying feeling!

The great thing about making an apron like this is that you don't need a pattern. You just need to know how long you want it (length) and how wide you want it along the bottom (bottom width) and how wide you want it along the top (top width). The last measurement you need is from the top of the apron to your waist. Here are my measurements if you just want to use those:

length: 34"
bottom width: 30"
top width: 11:
top to waist: 13"

If you want to make a similar apron follow along below--between the pictures and the instructions it should be pretty easy. I made it in a couple hours, while my kids ran amok around me. If I can do it, you can do it! (Smile with a tooth twinkle) Also, If the idea of adding grommets is intimidating to you, don't let it be! This was actually my first time working with them and they're so easy! I bought this grommet kit from Amazon.

Supplies:
 1-2 yards medium weight linen fabric
cotton twill tape 2-3 yards (more if you want to use for neck strap as well)
leather scraps 
grommet kit with grommets
regular sewing supplies including sewing machine

Simple Linen Apron || This Little Miggy
1) Cut a piece of fabric that is your measured length + 1 inch and your bottom width +1 inch.
2) Fold fabric in half the long way. Now take your top width + 1 inch, and divide by 2. Take that number and measure along the top, from the fold and make a mark on your fabric. (This is the top "bib" portion of your apron.)
3. Now from that point your going to measure use your top to waist measurement +1 inch and mark along the outside edge (opposite the folded edge). From those tow points you're going to cut out a curve. (see pictures if you're confused.) You want to cut through both layers of fabric so that your curve is even on both sides. Not cut that piece off. Unfold and you have your apron.
4. Time to make a neck strap. Cut a long strip of fabric 2.5"-3" wide by 40" long. (I had to sew two shorter pieces together to make this happen.) Fold long sides together, and sew down the long side. If you want to serger these together that will save you time (and frustration) from turning it inside out. Or you can press small seams on each side and then press in half and top stitch together. OR you can sew the long sides together and then use one of these loop turners (I highly recommend these) to help you turn it inside out. Turn it inside out and sew together. Note: You can just buy additional twill tape and use that instead. This will be the easiest option and will definitely save you time.

Simple Linen Apron || This Little Miggy
5. Now lets make a pocket. Just cut a long rectangular piece of fabric slightly bigger than what you think is a good pocket size (I didn't measure, but made sure to cut it square). If you have a serger you can serge all the edges, if not just fold over twice and press with hot iron. After serging all the edges, fold over the top edge and press in place, then straight stitch across. Press the remaining 3 edges underneath as well and then place the pocket in the middle of the front of your apron and sew the sides and bottom in place. If you want you can sew an additional seam down the middle.
6. Now to do the top of the apron. Cut another small piece of fabric that will be 3.5" long and as wide as the upper portion of your apron. Also cut two small squares (1.75"x3") of leather. Place your small piece of fabric right side up, with the leather on top on either side (also right side up) and then place your apron right side down on top. Now sew that top edge together.
7. Flip the leather and top piece over. Press fabric with iron and sew a seam along the top that goes over leather as well.
8. Now press the bottom edge of small fabric under until it lines up with the bottom of the leather pieces and top stitch over that as well.
9. Now get out your grommet kit, follow the instructions and place grommets in! (I watched a couple of YouTube videos to give me an idea. Also, the leather came out fine, but I had to cut around the linen to get it all the way out.) Place your neck strap in the grommet holes and knot on either side where comfortable.
10. Almost done! If you have a serger serge down both sides of your apron. If not, just fold and press seams and sew in place. Then on the curved side fold over a big enough piece to put your straps inside, press and sew in place. You're done!

Simple Linen Apron || This Little Miggy
Simple Linen Apron || This Little Miggy

I'm not gonna lie, it's PERFECT. This is exactly what I envisioned. I love it so hard. This particular linen was a scrap piece I had from another project, and just happened to be the perfect width and weight--soft and nubby and thick but not too thick. This is definitely going to be my new go-to apron.

Which begs the question...what should I do with all my old aprons? I will definitely still use and keep some, but other's I'm just not sure I want anymore. It's usually no big deal to get rid of stuff, but it feels a little harder to get rid of a "collection." Also, do you find that your tastes have dramatically changed in adulthood? I know trends and styles change, but at the same time I think an overall aesthetic can remain the same. I can't decided if it's just the trends and styles have changed or my overall aesthetic as well. Thoughts?

Friday, September 16, 2016

Special Needs Spotlight || Eli


Hi, I'm Leah, partner with the most amazing man Chris, and mama to two amazing littles (one who happens to have Cri du Chat (CdC) or 5p- Syndrome) and one crazy d-o-g. We live and love in Newfoundland Canada. Our family has inspired me to share the story of our unique experiences and to show that each and every person has the amazing potential to achieve whatever their heart desires and MORE. I'm excited to be here today to share our journey.
***************

Miggy: Welcome Leah. Thank you so much for being here today. Let’s start at the beginning, can you take me back to the day you knew something wasn't quite right with your son Eli? Was this before birth, immediately after, or sometime after that? How long did it take you to get a diagnosis and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Leah: When Eli was about 4 months old, we brought him to a doctor for a check up - just to see how much he weighed and how long he had gotten. While we were there we mentioned his high-pitched cry and how people would ask if there was a cat in the room when he was there. The doctor didn't think much of it but referred us to an ENT to get his vocal chords checked. We were fine with that and went on our way. When we got home, Chris and the kids went for a nap and I, of course, googled "High-pitch Cry" and Cri du Chat (5p-) Syndrome popped up over and over. As I read through the characteristics I knew in my heart that this is what Eli had. There had been a couple of occasions that Chris and I had wondered about Eli's development because he was our second child and we had already seen a child at 1 month, 2 months etc, but we just put it down to "kids develop differently". When Chris woke up from his nap, I shared the information with him and we both knew this is what our little guy had. The clincher for us was the single palmar crease on his right hand that is prevalent in Cri du Chat Syndrome (as well as Down Syndrome).
We were absolutely devastated when we first read about Cri du Chat Syndrome. The information online was depressing and scary and sad and no matter how much we researched we just couldn't find the good stories. The sweetness and plain perfection that we saw in our little guy was no where in the literature. Over time, this is what drove me to start writing my blog. To share the beauty of Cri du Chat Syndrome. It can be scary and sad but it can also be funny, sweet, loving, beautiful and perfect. We decided early on to choose happiness and focus on Eli and not his Cri du Chat diagnosis.

We were referred to a pediatrician fairly quickly and were in to get genetic testing within a couple of months. It wasn't a surprise when the results came back positive for Cri du Chat Syndrome. At that time what was difficult to hear was that Eli's deletion was fairly large. CdC is also known as 5p- Syndrome because it occurs when there is a deletion in the small arm of the 5th chromosome. In a small portion of cases this is hereditary but mostly it happens spontaneously. Hearing that Eli`s deletion was large, and that he would more than likely have many of the characteristics (and therefore difficulties) of Cri du Chat Syndrome, was a blow because we had started to bank on it being a small deletion. We again had to check ourselves and get back to that positive place of focusing on Eli and his potential instead of his diagnosis. In our case, Cri du Chat was a spontaneous occurrence which we now call our "spontaneous blessing".

When we look back on those first couple of months we can remember the raw, deep sadness because we had no idea at the time what Cri du Chat would mean for our precious boy. We didn't know that we would experience the biggest joys of our life seeing him develop in his own way. We made a choice early on to celebrate Eli and not focus on his diagnosis and that has really set the tone for those around us too. Eli is Eli - in all his awesome, perfect, loving silliness.
Here is the link to a couple of my blog posts: The first is "Diagnosis Day" which is a much more detailed account of our feelings around Eli's diagnosis and the second is "That Same Little Hand" which talks about Eli's Single Palmar Crease

Miggy: Can you explain how Eli’s needs affect your day-to-day life?  

Leah: I don't feel that Eli's needs affect us very much now. They are just what we do, what we have grown into as a family. Eli is almost 2.5 and has started to crawl around everywhere. He is pulling himself up to stand and can climb up onto the couch! This leads to me running around after him all the time!

Eli does have some issues with chewing and swallowing so we are still spoon feeding him food that is pretty chopped up and more easy for him to manage. He is making strides in feeding himself softer things like bananas, sweet potatoes and berries. He can pick them up easily and loves to eat new food!

The biggest thing is that Eli can sometimes be really off with his sleep. He has slept through the nights but he very frequently wakes a number of times. Sometimes he can be put back to sleep easily, other times are a struggle. He has never had a consistent sleep schedule, even though we have tried every method available. It has improved 100% since the early days where it wouldn't be strange for him to sleep just an hour or two a night. Those days were tough and to say that my husband and I were zombies just getting through the day would be putting it mildly!!!

Having a child who is non-verbal definitely has its challenges as well. When Eli is sick or upset, he can't communicate what hurts or what is wrong and that can be absolutely heart wrenching as a mom. In day-to-day life, though, Eli has learned a handful of signs that have helped us understand him and relieved some of the frustration for him. We want to make sure that Eli can express himself in whatever way he is able. We are confident that he will learn to speak but will take any method available to us!

Eli goes to Physiotherapy, Occupational Therapy, Speech Therapy and Music Therapy right now and we just knit those into the family schedule for the week. We are so thankful for these early interventions and we have seen Eli come leaps and bounds over the past 2 years.
Miggy: What are the biggest worries you have for Eli? On the flip side, what are the hopes and dreams you have for him?

Leah: The biggest worry for me, and I'm sure all other parents of children with exceptionalities, is what will happen to him when we are gone. There are not many resources in our province for adults with exceptionalities and very little support. Both my husband and I are committed to creating the things that may not be already in place and we are already connected to a local group who are working hard at creating a L'Arche community here in Newfoundland. {From www.larche.ca:8080/en_CA: In L'Arche, people who have intellectual disabilities and those who come to assist share life and daytime activities together in family-like settings that are integrated into local neighbourhoods. L'Arche in Canada has nearly 200 homes and workshops or day programs. These are grouped into what L'Arche calls ''communities"}

My hopes and dreams are the same for both of my kids. I want my kids to know that they are loved and supported by us in whatever they choose to do. I want them to lead lives that are full of happiness and inspiration and to understand that there are ups and downs in life and that they get to choose their perspective at all times.


Miggy: How can people best approach or respond to your Eli? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Leah: I want people to know that Eli is just a little kid who laughs, loves and enjoys life. He may do things differently but that does not make his needs or wants any less than any other human.
I want people to ask me questions about Cri du Chat. We celebrate Eli's diagnosis. I am fiercely proud of every part of both my kids and Cri du Chat is just one little part of who Eli is. Understanding that we are all on this continuum of ability where we all have our own gifts and our own struggles is key. There is nothing "wrong" with someone who develops differently than the kid next to them, they are developing exactly as they should be. To avoid awkward or hurtful situations? Just be a decent human being and use words that celebrate someone instead of pitying or looking down on them.
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your daughter and her relationship with Eli?
Leah: There is 20 months between our daughter and her little brother and to say she has loved him from the moment she knew about him is not a stretch. The very first words she put together in a sentence were directed at my growing belly, "Baby brudder, come out! Play me!!". When Eli was first diagnosed, one of my first feelings was deep sadness for Maeve and what she would miss out on having a brother with exceptionalities. In those first few weeks, though, she was the perfect example for us. Nothing had changed for her, Eli was still the same Eli he always was and she just kept on treating him the same. It was beautiful! Now I realize that she gains so much more in life having Eli - she will have the compassion and understanding that only came into my life much later. It will be her normal and all that beauty will surround her as she grows. Similarly, Eli is blessed to have Maeve. She is an adventurous, funny, caring little girl who loves hard and will no doubt bring out the best in him as he grows. She has come to Eli's Physio appointments on occasion and loved helping her brother stand up on his own. She also loved making friends with the other kids around, asking questions about their G-tubes or wheelchairs in a no-big-deal kind of way. Just a normal part of life for her and I am so thankful she will be more accepting and understanding because of it.


Miggy: If you could say something to a mom who is just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?    

Leah: I would say what my friend at the time told me (she has a son with CP and was a huge example for me in those early days): "You will be okay." I may not believe myself right away but I know that I would cling to those words when I felt everything was falling away. I would also say that life is not over. Everything is still beautiful and more so because of this. Yes, life is different than you expected but it always is anyways. This will make you stronger and help you find your purpose and both of your kids will be the absolute joys of your life.  
Miggy: What is the biggest lesson you’ve learned since becoming Eli’s mom?

Leah: Oh my. I have learned SO MUCH from my little teacher, Eli. I think the biggest thing for me was understanding compassion and service. I always thought that I was a really compassionate person, but having Eli has opened me up to the crazy beauty in the lives of those with different abilities and exceptionalities. I knew nothing about this side of life and I am so thankful that I have made some lovely friends in the families I have connected with on this journey. I look forward to continuing to learn more!!

***************

Thank you so much Leah. First I love that you said you don't think his needs affect you that much--it's just what you've grown into, what you do. It's really true that a new normal sets in and for many of us, it's not big deal. Doing things a little different becomes not just normal, but endearing--something you embrace because these little things are who you are as a family, your identity. And your advice was spot on as well: "Life is not over... yes life is different than you expected, but it always is anyways." Right? Life is ALWAYS different than we expect. And this is just one of those things--so embrace it. Lastly, high fives for finding your sons diagnosis via Google. I too was the one who found Lamp's diagnosis via Google. And while some doctors seemed to look down on my Google MD tactics, I actually had one doctor encourage me. He said that as parents we can devote more time to researching for our child, then they can. I know that was not a great experience for you per se, but I think it's important to note that there are things we can do to empower ourselves as parents. Thanks again for sharing your story and your amazing son Eli with us. XO

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a great weekend!
XO
Miggy

Wednesday, September 14, 2016

Confronting Bad Service

I scheduled a hair cut earlier this summer at my favorite salon. It's a popular place, but I was still a little surprised that my appointment was a a month and a half out. Finally, a couple weeks ago I went to get my cut and I was really excited as my hair needed some serious TLC. I wasn't going to my usual guy (because his schedule was even more full) but I was going to a guy who had cut my bangs before and had done a really good job.

We talked extensively about my hair getting thinner on top and what I can do about it (he recommended starting with Nioxin). Then we talked about what I wanted in a cut. I wanted to keep my bangs longer as I was liking the longer, split-down-the-middle Bridgett Bardot type bangs, but I needed a few inches off the bottom as my hair was especially thin and straggly around the bottom. I told him I didn't like to have short layers around my face--I mentioned that a few times as it drives me batty! I showed him 2 different pictures of cuts I liked (that were similar to each other). They were both "lob" style cutes (long bob) and I said, "Like that, but longer."

You know where this is going... as he was cutting (and while he did a olaplaex treatment) we chatted a lot. Then I remember at one point my gut sinking as I thought, "wait....is he cutting the front short?" Now I didn't explicitly say "please don't cut the front shower than the back" but I had thought I made it clear with my no-short-layers-around-my-face talk. And honestly that sinking feeling remained during the cut, but I kept trying to block it out. Maybe he's just layering a little, maybe it's not as short as you think...just give it a chance I told myself. When he finished I knew I wasn't happy, but I hid it, smiled and bounced out the door.

He had kept it long, but only in the back. And long in the back, shorter in the front is one of my personal hair pet peeves. Truly, I HATE this cut on me. Throughout the day I was still trying to tell myself it wasn't that big of a deal--but by evening I was really upset. It was much, much shorter in the front and overall just not what we had discussed.

Mainly I was upset because HOW DOES THIS HAPPEN TO ME SO OFTEN? I swear, getting this particular cut even when I have talked and talked to the stylist in depth has happened to me so. many. times that I am starting to believe I'm part of the problem.

However, in this particular instance I did not know what to do. Not only did I wait a long time for this hair cut, I also paid a lot of money for it. And I didn't like it at all. Historically, hair has always been where I spend the most of my beauty money. Even in college I always managed to spend a little more than I should have on a good cut. Hair is just so personal and that's one of the things that I was having a really hard time with--this cut left me with hair that did not feel like me.

In general I'm not a shy violet and can confront people when I feel it's warrented. I have no problem letting a server know if my food came out wrong and even with our bathroom renovation we had a really difficult situation when we had to ask them to rip out the floor and do it all over again (another post for another day!).  But for some reason confronting my stylist felt harder than either of those scenarios. Food, for one isn't a very high stakes thing. The server is just the middle man and if something is wrong, it's not necessarily his fault--and either way it can be fixed relatively easily. Now the bathroom was very high stakes. Ripping out the floor and doing it over was AWFUL--for them, for us, for everyone. BUT, it was something I was willing to put my foot down because the results would be permanent and we're paying a lot of money.

But a haircut? First, this particular cut couldn't really be fixed because there was already too much length taken off. And second...it will always grow back right? RIGHT? Ugh, my stomach was honestly in knots about it. Additionally, the idea of criticizing his work (which for many stylists is something they love and have a lot of pride for--as they should) also felt very difficult. A cut is less easily fixed than a hamburger, but also not as permeant as a bathroom floor, but I didn't want to let it slide! Not this time! I decided just to write up an email and see. Maybe just writing an email would make me feel better. Then I took to FB and asked friends if they have ever confronted a stylists after a bad cut?

After a lot of encouragement, I sent the email. EEK! And then I got a response.

He was SO gracious, kind and apologetic. He completely admitted being at fault for not asking more in depth questions and really fleshing out what I wanted. And he said that in hindsight he can see where he went wrong. He refunded me the full cost of the cut and olaplaex treatment, offered the next two cuts for free and even offered to buy the Nioxin product for me as well as a gesture of goodwill. He also thanked me for confronting him and letting him know I wasn't happy, rather than just letting it go.

PHEW! I have to say, one of the reasons I love going to this particular salon (and in general "nicer" salons) is the culture there is one of kindness, generosity and really wanting you to feel your best. Even though I was sure I would get a kind and positive response, I was still pleasantly surprised with just how above-and-beyond he went to make restitution. I mean even by the end of his email I was like, dude... it's just a hair cut. Kidding. Truthfully, I was very relieved and also very glad I spoke up. Obviously I was as kind as possible, but its still hard to come off as kind when telling someone you don't like what they did to your hair, but even in those sticky situations kindness goes a long way.

Why is confronting bad service so hard--or is it? Is it easier just to let it slide? Do you not want to come off as mean or worse, bitchy? Is it harder for men vs. women? Personally, I think it really depends on the type of service, the cost, longevity and how personal it feels. I think that the higher the stakes, the harder it is to confront. Something really personal like hair is much harder, than a plate of food. Then there are things like home renovations which  are personal, costly and long lasting! A trifecta of difficulty to confront. The only other time in recent memory I can think of when I confronted bad service is when I went in for a massage and this lady was giving me the worst massage of my life! So after she had already started I was like,"I'm only going to have time for a 30 minute massage instead of 60 minutes today--thanks!" Do you have a hard time confronting bad service? Like me, do you find it harder to confront a bad haircut than almost any other service out there? Ha! What's your most difficult story of confronting someone when they gave you bad service? 

Friday, September 09, 2016

Special Needs Spotlight || Jena

Hello there!  I'm Lacey. I have to start by saying this is a huge honor for me to be able to write a  post on Miggy's blog that reaches so many members that have had similar experiences as we have. I am married to my husband Solomon for 10 years and am honored to be the mother of 3 wonderful children, Jeffrey age 10, Jena age 9 and Jordan age 5. I will be introducing you to my daughter, Jena Nichole who was born with what her geneticists believe is Noonan Syndrome, though we are still in the diagnosis stage.
***************

Miggy: Hi Lacey! Thank you so much for being here today. Let’s start at the beginning, can you take me back to the day you knew something wasn't quite right with your daughter Jena? Was this before birth, immediately after, or sometime after that? If applicable, how long did it take you to get a diagnosis and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?
Lacey: The day we knew something wasn't right was the same day our daughter, Jena was born. A few hours after she was born, the NICU doctor came in and told my husband and I that they believed our daughter had Turner Syndrome. We had never heard of this before and while listening to the doctor and looking at our precious daughter (who was my easiest pregnancy out of the three), I just remember feeling like I was in a dream. The next day was then filled with my husband and I looking up some information on our laptop and figuring out exactly why the doctor was thinking our daughter would have Turner's. Early the next morning, Jena was not pooping so the doctors wanted to do an ultrasound and figure out if there was any reason why she was unable to have a bowel movement and it was then during one of their many tests they were running, that they found that not only did Jena have a blockage in her bowels, but also had not one, but THREE congenital heart defects! That morning was absolutely the worst moment of my then 23 years. My husband had gone out to breakfast with his dad and I was alone in the hospital room recovering when the neonatologist came in the room to give me the news and I just remember feeling so scared. The joy of being a new mom suddenly rushed out of my body and the image of having to say goodbye to my daughter suddenly gave me the most sick feeling to my stomach. The neonatologist also worked at a nearby (about 50 miles away) children's hospital, so he was saying things such as having Jena "transported" there and then they would be able to give us more information. In reality he was saying to me "we cannot do any more for your daughter here and we need to have a team come here to get her because she is critical."
That day, the transport team was able to send a medical vehicle (they were unable to send a helicopter due to the impending tornado watches/warnings that were going on that same day) and was able to take Jena to the University of Iowa Children's Hospital just moments after we were able to have her baptized by a local pastor. The next several days meant lots of doctors, nurses, and tests for Jena. Thankfully Jena's bowels did start working at the children's hospital and we were so relieved that things were starting to look hopeful. 

However, the next hurdle, her heart issues had the cardiologists and thoracic surgeon come to a conclusion. Jena would need heart surgery to repair her heart issues. Jena had heart surgery when she was only eight days old and thanks to God, the many nurses, doctors, surgeons and everyone else, Jena made it out of the surgery with two out of her three heart conditions corrected. The only one that remained was her ASD (atrial septal defect) and the surgeon/doctors were hopeful that it would close up on its' own in the upcoming years. I am happy to say Jena had a wonderful recovery from her surgery, we were able to leave the hospital when she was twelve days old and today Jena's heart is doing wonderfully. Her ASD has shrunk to the point that at her last cardiologist visit, the doctor had to re-read her chart because she was "unable to tell that Jena had any kind of heart surgery because the repair was done so wonderfully." This was the greatest news we ever received.  I can’t express how grateful and thankful we are to the wonderful doctors, nurses, surgeons, everyone that helped save Jena’s life.
Several months after her surgery was done, we ended up getting the genetic testing back for Turner Syndrome and it came back negative; Jena did not have Turner Syndrome. From there the geneticists have been looking towards Noonan Syndrome, which is Jena’s current clinical diagnosis today. Although after 9 years of testing for all the genes they have been able to identify that are genetic markers for NS, all of Jena’s tests have come back negative, still.  There is still much research and work to be done in order to identify all the remaining genetic markers for NS (I believe to date there are only 13 that have been identified), so we do what we do best, wait.    
Jena with Dr. Jacqueline Noonan who discovered Noonan Syndrome. 

Miggy: Can you please educate us about Noonan Syndrome and explain how Lacey is affected by it and how her needs affect your day-to-day life.
Lacey: Noonan Syndrome is a genetic condition which affects approximately 1:1,000-2,500 births. Individuals with NS may experience issues in all parts/systems of the body, which is why it is considered a multi-system disorder. Some of the possible issues with Noonan Syndrome can include: bleeding issues, congenital heart defects, lymphatic abnormalities, growth issues, feeding and gastrointestinal issues, learning disorders, autism, chronic pain (unexplained), chiari malformation, hypotonia, ptosis, skeletal malformations, orthopedic issues, ophthalmology issues, oncology issues, and many more. Jena currently has a team of up to 12 specialists, some of which just monitor her.

Jena's main conditions currently are her heart issues. As stated earlier, she was born with 3 congenital heart defects (PDA, ASD, and coarctation of the aorta) and thanks to her life-saving heart surgery when she was eight days old, they were able to repair two of the defects and the remaining defect, her ASD has shrunk on its' own over the last 9 years. Jena also has a chest deformity called pectus excavatum which causes her to have decreased lung capacity and is currently on an inhaler for any flare-ups when she is overly exerted. She also has some undiagnosed immune system issues and tends to get colds/coughs/viruses a lot easier and it's much harder for her to get rid of these when she does get them. She also has some bowel issues, so gastroenterology is a frequent specialist for us but looks to be somewhat controlled now after several years. Other than these and some other specialists that she sees on an annual basis, Jena has exceeded all her doctors' expectations and has excelled both in the classroom (she is in a typcial, public school setting) and in some sports including dance/tumbling and softball. As for her diagnosis of Noonan Syndrome, it is still in the process. As of June 2016, Jena underwent whole exome sequencing which has since come back as inconclusive, so she will continue to have the clinical diagnosis of Noonan Syndrome until more tests are available. As her parents, we like to think of Jena as being perfect just the way she is.  For more information on Noonan Syndrome, please visitwww.teamnoonan.org which has been as been a wonderful source of information and support for our family and many others.  

For the most part Jena's day to day life is somewhat normal compared to other special needs children. She goes to school, she’s doing excellent at her schoolwork and behavior-wise at school so she only needs a 504 plan right now for things like preferential seating in her classroom, modifications like using a computer/tablet when her hypermobility is causing her pain and her ring splints are not helping. Otherwise on the days when Jena has a doctor's appointment or specialist visit, then we go to those and any required testing those require. With a total of 12 specialists now, and possibly adding a 13th not counting her eye doctor, pediatrician, dentist, physical therapist and counselor it can be overwhelming just getting to all her appointments and therapy visits.
                           
Miggy: What are the biggest worries you have for Jena? On the flip side, what are the hopes and dreams you have for her?
Lacey: My biggest worry for my child is her keeping her self-confidence and positive attitude her whole life. We have told Jena since she was pretty young that she is a little different from other kids but that just makes her more special and precious in our eyes. Unfortunately the last couple years have brought a few bullies at school, so Jena has already been faced with the cruel looks, comments and physicality of bullies in her elementary school. My worry is that because of these people, Jena will lose her confidence that she has and will become depressed as she gets older. On the other hand, I know that with the right support system (family, friends, teachers, etc) she will be able to do great things in and out of school. Jena is a very intelligent young girl who has the biggest heart and I know that these two attributes alone will take her many places on her journey. Jena already has hopes of getting married and having children when she gets older. I want this more than anything for Jena and know that she will be a great nurturer because of the caring nature she shows towards her family (especially her little brother) and other younger children.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Lacey: Yes! I didn't ever think that as Jena grew we would have as many questions regarding Jena's bowel movements but we do! On any particular day, especially if Jena is complaining of her typical stomach pains, I'll ask "have you pooped today, did it feel loose or hard?" Questions like that definitely are not what I imagined saying to my 9 year old but are definitely important!
Miggy: How can people best approach or respond to Jena? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Lacey: Thankfully Jena has not had too many hurtful situations but those that she has had, she has approached them wonderfully. Lots of kids will question Jena about her neck (since most kids with Noonan's have a webbed neck) and she will simply say, that's because "I'm special and unique; you are too in your own ways." Jena is a bright, caring young lady who just wants to be treated like anyone else, she just has some extra things we have to be careful of/watch for medically such as getting a cut, making sure she clots and the bleeding stops in a reasonable amount of time, or if she has a cough/cold that just will not get any better.


Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your son/daughter?

Lacey: I think Jena's brothers have been a lifesaver for Jena, my husband Solomon and I. Jeffrey (Jena's older brother) is only 13 months older than she is and has grown up alongside Jena. He has gone to all the doctor appointments, out of town to the specialists, gone to the therapy appointments--they even potty-trained around the same time together, because it was just easier. Jena has always wanted to do things that her brother does including baseball/softball and we have let her. One year they were even on the same team since their ages allowed them to play together and they did great!  I think this has been wonderful for Jena because they both love to play sports and like the idea of competing against others, and the feeling of loss and victory. To date, Jena has played on 2 championship softball teams (city wide). 

Jeffrey has also become Jena's "protector" at school. It's at these times that I am so grateful to have not only Jena but also her older brother who is always looking out for her. They may fight like cats and dogs, but I truly know they both love each other and I know Jeffrey is the typical protective big brother and doesn't like anyone (other than him) picking on his sister.
Jena also has a little brother, Jordan (5 years old) and he has been our comic relief. Jordan is the perfect little brother that loves to bug his big sister but at the same time, he knows just the right thing to do in order to bring laughter and smiles to our very long days, even those when we didn't think we would smile or laugh.  We call him our comic relief that was meant to bring sunshine to our lives.   

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Lacey: The best thing I've learned in my years as a special needs mom is NOT to take any day for granted. Take the days that your child will willingly finish their dinner and celebrate it, be thankful when you take your child to their conference and they are getting along well in their class, be grateful when a cold is just another cold and you don't have to take your child to the ER or another specialist and can just treat them with chicken noodle soup, tissues and plenty of hugs and kisses. Believe me, there will be plenty of days where you will cry yourself to sleep but just think of 1 thing that day/week/month that HAS gone right and hold on to that to get you through the bad news you may have gotten. Tomorrow is never promised.

***************
"Tomorrow is never promised." I love that. And it's so true. While it can be hard to always be grateful in the moment, I truly think gratitude is a key to a happy life. It really struck me when you said that since Jena hasn't tested positive for NS yet, you do what you do best...wait. I think that waiting and the subsequent patience that is cultivated, is one of those things special needs families become good at. You learn to let go of so many expectations and just see. You wait. And it's not giving up or giving in, it is learning to live in the present with what you have now. I'm so glad Jena has two very loving and loyal brothers. Siblings are absolutely they best aren't they? Thanks again Lacey and so much love to you and your sweet family!

You guys I've had so many wonderful spotlights lately--it's been fantastic! So thank you. And if you or someone you know would like to be featured, please email me at thislittlemiggy at gmail dot com and I'll get back to you as soon as possible. 

Have a great weekend!
XO
Miggy

Wednesday, September 07, 2016

On Giving our Kids More


Thanks for supporting sponsors here on TLM. 

There are two things I'm becoming surprisingly strict about as a mom: my children spending time outdoors and my children eating healthy food. Nature and nurture you could say. Certainly these aren't "surprising" parenting concerns to most people, but as a latch-key kid of the late 80's and early 90's who spent way too much time in front of the TV eating my way through an entire box of Little Debbie Swiss cake rolls, this most definitely comes as a surprise to me.

I was the kid who felt bad for my friends whose parents only let them watch an hour of TV a day in between bike rides and soccer games. Poor suckers, they probably didn't even know the name of every Golden Girl or what the latest shenanigans were on Growing Pains/Diff'rent Strokes/The Wonder Years. And when it came to nutrition I was no better. I remember being in high school when my friends were consciously eating fruits and vegetables because they claimed it "made them feel better." I remember being confused because their parents weren't even watching. Hello? You're parents aren't around, you don't have to eat that crap. I just purchased 4 fruit roll-ups for lunch, want one?

My how the tables have turned. Now my kids are the poor suckers who can't watch TV all day and who we force to play outside even if it's just on a neighborhood walk after dinner. And on top of it, we only let them have treats 2 times a week. I know. We're the worst. My 10-year-old self is cringing at the strict and deprived lifestyle my children are forced to adhere to. That being said, my current mom-self really appreciates that CLIF Kid is dedicated to reclaiming play with our kiddos. Did you know that only 31% of kids play outside today, as opposed to 70% of their moms who played outside when they were kids? Obviously these ratios don't apply to me, but still it's shocking. Yet believable.

As a parent there's the idea that we want to give our kids more than we had. For some people, they mean more stuff. When I think about giving my kids more than what I had, I think about giving them more experience, a better work ethic and more connection. Connection to each other, to nature, and to the world around them. A less is more kind of approach.

 So we hike.
And this weekend we also camped and canoed. My kids actually love being outside, but hiking and being in nature does tend to stretch their kid-limits just a bit. But, in a good way. Our oldest knows that her legs are strong and that she can hike for miles and climb difficult trails by herself. She knows how strong she is because she's done it. As a kid, I didn't know these things because I didn't do them.

In a world fast-paced world of 24 hour news cycles and short attention spans, I love that nature often demands slowing down and attention to detail. Like noticing tiny caterpillars among the giant trees, finding a single Horton-Finds-a-Who flower and a fairy ring of mushrooms just off the trail. This is the more I want for my kids.
And while we're talking about more, lets just say I'm always happy to have a healthy and quick snack option for my kiddos to refuel their energy while we're out and about forcing them to suck the marrow out of life. CLIF Kid Zbars are made with organic ingredients and have no high fructose corn syrup or artificial flavors. Also, my kids LOVE them. The fact that we can eat them while we hike is an added bonus.
After a morning hike we climbed aboard a canoe and floated down a lazy river, taking our sweet time. This is a picture of my two year old toddler clutching an oar with a life jacket on because she's about to float down a river in a canoe. A canoe! I don't know when I first floated down a river in a canoe, but I was definitely not still in diapers. Again, experience. More. 
We stopped on a little rocky beach to play in the water and throw some rocks. I told my husband that I've never in my life been able to skip a rock on the water. He showed me (again) and I tried (again) and I failed (again). So I tried and tried and tried until I did it! I skipped my very first rock ever on this river just this past weekend.

Another added bonus to giving our kids more experience and connection? We give it to ourselves as well.

Do you hike, camp and spend time outdoors with your kids--if so, what are your reasons? Are you trying to give them more by giving them less? I love this video by CLIF kid--it's the perfect vision of a "less is more" childhood. 


SaveSave
I was selected for this opportunity as a member of Clever Girls and the content and opinions expressed here are all my own.