Wednesday, 22 June 2022

It will all work out...eventually!




Avalon: You two are gonna keep doing things as usual.

Booth: Sometimes you gotta settle for second best.

Avalon: By the way, my cards tell me this all works out eventually.

Booth: Oh. Really?

Bones: What works out eventually?

This is a quote from one of my favorite TV shows, and has been for a very long time. The chemistry between the actors is awesome, as well as the humor, sarcasm, ect.

Avalon is one of Angela’s friends and also a psychic.

As a woman, we are taught to believe,

most of our adult life NEVER to ‘’settle’’

for second best….

Perhaps it is a feminist mindset from way back when?

Then, we go through our lives not settling, and missing the boat, I think at times and wondering why we cannot get to where we want to go, or have what we want.

When I was watching this the other day, I knew that I was going to write about it, sorry that I cannot find the actual clip,

but it is Bones - Season 5 Ep 1 - Harbingers in a Fountain.

One of the ending clips.

I believe this statement from Avalon, as it is, I think, the open door to what we really want,

if other things are lined up the right way as well.

I believe the door to what we really want and getting it, is mostly

patience.

And having the right support around you.

Settling for the next best situation is something I have had to do in my familial situation or expect to have to do when the timing is right.

We are brought up to believe that ‘’settling’’ is almost like a sin.

I do not think this way at all….

Going with the flow, especially when we don’t get our way, and being grateful more than anything for what we do have, is the precursor to getting what we want,

and it’s not a sin.

Settling for second best,

CAN be a good thing, along with our intuition as well!

If it doesn’t agree with what our intuition says, for sure close that door or relationship, or career move, etc.

Written by:

Nahani Johnson

June 21, 2022

Sunday, 29 May 2022

Everything really, is about timing!

 


I have learned that life really is about 


Timing, 


but it is also about     


Waiting and 


Patience….. 


For whatever it is we are waiting for. 



But why, it’s so…….. 


HARD TO WAIT !!!! 


Self-Care, 


Growing UP, growing pains, priorities, learning healthy living, boundaries, assertiveness.


Puzzle pieces really need to be in the right places.  


‘’Wait’’ for it…… 


They have to also be the ‘’right’’ kind of


Puzzle pieces.  



We know our ‘’selves’’ better than anyone else does - in the meantime, we need to focus on our self-care, hobbies, passions, education, career; 


Our selves - first. 


We need to get passed the past and look to the future as best as we can.  


Scars will always be there, but they can be minimized- 

- with your self-care and self-love. 


I myself am getting treatments here, soon, to help me with what I call mommy-tummy - It’s very difficult for me, I have S-curve scoliosis, and have been doing everything right. The evidence is there, I just need this one thing called BODY CONTOURING, now and more physio from a certain place I love.  


In a while, I may post pictures, before and after ones. 


I have dealt with this since 2011 and have been working on getting in shape since 2018. Moving around in bed is hard, vehicles are hard, my work is hard, anything to do with bending. I think I will be taller after this too!


I have certain relationship dreams that are finally lining up, but I need to feel good again! 


Doing the best things for ourselves no matter what it takes - that’s what brings us joy and happiness and fulfillment.  

Somehow we learn to give to receive (love, attention, etc). 


We need to put ourselves first before we can look after others well. 


When you are a child you’re still learning to take care of yourself; what happens when a person has to look after their parents or siblings firsthand?


We lose track of ourselves. 

Lose our dreams, desires, wants, needs, 

Then, we wonder why we feel the way we do: confused, mad, angry, in a fog, etc.


These are some of my favourite quotes:



"Observe due measure, for right timing is in all things the most important factor."



"So much of life is not about whether you're good or bad, or right or wrong, or can afford or not afford - it's just about timing." - A. A. Gill, 'Uncle Dysfunctional', 2017.

"Sometimes, the thing you've been looking for your whole life is right there beside you all along."
-Peter Quill, 'Guardians of the Galaxy.'

"I believe that everything happens for a reason, but I think it's important to seek out that reason; that's how we learn."
-Drew Barrymore.

"Time doesn't heal emotional pain, you need to learn how to let go."

- Roy T. Bennett,' The Light in the Heart', 2016.



Written by Nahani Johnson, May 2022
Living with 22q


Tuesday, 19 April 2022

Our Feelings Matter

 


When I was younger, if I had an issue with anything, certain responses were always "just put up with it, ignore it," etc….. Because people didn’t know how to deal with things or resolve them, or help me to feel better, ever. There were never even any hugs given, or I love you’s when I really needed it. 


Because of this, it causes one to feel like they have to stuff away everything they feel when they aren’t given a chance to be heard, or acknowledged. Regardless of whether people can handle a subject or help make someone feel better without it being something like candy or chocolate… (This was the answer back then. It was a ‘’temporary’’ solution and only distracted from the matter.) In the end, what do you feel? More mad, more frustrated.  


As self-care seems to be an ongoing theme for me, an important part of self-care is also knowing when to speak up.


Even when you feel like you won’t be heard, the effort has to be made at some point. 


I believe in healthy give and take, and healthy relationships call for both parties to have a voice, be heard, and feel heard. Experience forgiveness, an apology (letting go of one's pride, accepting when they have done someone wrong, making a conscious effort to NOT do it again, along with serious efforts to fix an issue when there is sincere love. 


In this Covid/war world, we have too much thinking time - and I am looking forward to having some long-awaited things at least attempted to be dealt with, “maybe some nice surprises come out of it?’’ and maybe finding some love from some of these people I deal with. I am also needing to take on some martial arts later, and also plan on learning some more assertiveness skills for myself and my daughters’ sake.  


To Be Continued!

Written by Nahani Johnson, April 2022
Living with 22q

Trust Yourself - Always!

 


I was a naturally shy child in my younger years. I was bullied almost every day in school. My dad was also one who would avoid ANY type of confrontation he could - a form of people-pleasing. 


I didn’t have many friends growing up, so later on in life, I would be ecstatic for ANY Friend, even if they weren’t good for me, or tended to use me for something. I didn’t learn how to have the right kind of friends and this has caused MUCH hurt in my life. 


There is this ‘’one word’’ we have to say sometimes.  


<NO>


WE ALL HAVE A RIGHT TO USE IT. 


WE ALL HAVE A RIGHT TO NOT BE ‘’AFRAID’’ TO USE IT. 


The worst things that happen to us, usually, are the cause of a boundary issue, knowing when to say yes or when to say no. 


It is so hard especially if you have wounds in other areas. Parents, teach your kids how not to be afraid of it. Especially, before they reach adulthood.  I think it is the one thing that a kid should learn when a kid prepares for adulthood.


If you have to take courses or another type of training to help. Don’t be afraid to.  


My biggest hurts and mistakes came out of being afraid to say ‘’NO.’’



Friends


Trust your instincts always. If you don’t have a good feeling in your gut.  Do not agree with "anything." MOST things you can think about. For the things that you can’t, this is why you need to be so in tune with this area.


RELATIONSHIP SCAMMERS… SO MUCH FRAUD. Trust your gut!


So things don’t catch up to you like they did me, and then you are "really in a pickle." If you have a dream, pay attention to it. (Also a recent experience) Dreams do guide us as well. 


If you have to role-play for practice, do so. Whatever you have to do, do for you!


Written by: Nahani Johnson  April/22

Living with 22q





Saturday, 2 April 2022

Book recommendation - The Tao of Davis


We always try to watch for new resources for families that can help them on their journey, and we were excited to see a new book (January 2022) written by Cheryl Wood, mother of a child with Phelan-McDermid Syndrome. The book is entitled Tao of Davis: A story of developmental disability in a mountain town.

Having someone put into words the experiences we feel as parents make us feel seen. It certainly helps us to know we are not alone.  

From the author:


"When I hear from others that my life appears to be a challenging one, I smile for I have yet to witness a life without a challenge.The follow-up comment, which never fails to turn my lips downward with discernment is that “they” could not do it, be in my shoes and tend to a family member with special needs. Nonsense. Any of us can. At some point most of us do. Accidents happen, diseases loom in the corners, loss occurs (intellectual or physical), parents and spouses age, and children are born who are different and will require more assistance. What I know is that each of us with the responsibility of caretaking can be flawed enough to be embarrassed when we stand out, and strong enough to create a home filled with laughter alongside the tears. We can learn to be flexible when our days go sideways, and to regain our balance when we stumble on ever-shifting terrain. Living with or without challenges is a physically and mentally fragile process.To do it well requires practice, and this starts with today, not tomorrow. I have learned to forget about happily ever after and fight hard for happily ever now."

Thank you, Cheryl, for sharing your son with this new book!

For those of you who purchase it, don't forget to leave a review on Amazon for the author, and please share this new book with your networks. 

You can find the book on Amazon.

You can learn more about Phelan-McDermid Syndrome by visiting the Foundation's website, pmsf.org 

Visit Chromosome 22 Central's website at c22c.org

Do you have a story or resource we should know about? Email us at c22central@gmail.com.


Wednesday, 16 March 2022

Atle - Living with Emanuel Syndrome

We were living in Saskatoon, Canada. It was Good Friday, April 9th, 1993 when our Atle decided to come into this world. He was such an easy delivery and everything seemed fine. He looked perfect. No obvious abnormalities, no problems initially. I was a bit worried because he didn’t latch on well to the breast but his older brother also took a while to get the hang of it so it wasn’t a big concern. They told me that his blood sugar was low the next morning so we stayed an extra day. But he still didn’t seem to be able to latch. He would paste his tongue up to the roof of his mouth leaving no room for the nipple. My brilliant husband figured out how to use one of those pacifiers with the hole in the back for your finger to force the tongue down so that we could slip the nipple in and get him to eat. Breastfeeding was not going to happen for this one apparently. So, we went home with the formula a bit disappointed but no big deal.

At home we noticed that he ate very very slowly. Like over an hour for one of those mini 4-ounce bottles. He would completely exhaust himself with eating and fall asleep before he could finish. The next day I couldn’t wake him up at all. I undressed him, used a wet washcloth, even pinched him but couldn’t wake him up for more than a few minutes. Off to our trusted family doctor. There we discovered a huge inguinal hernia protruding through his abdominal wall. He was 10 days old and already having his first surgery. The other side popped out a few days later and his second surgery was at 30 days of age.

So, when he still didn’t have head control and my MD brother-in-law was getting concerned, we just thought “well, he’s had two surgeries, he’ll catch up”. During this time, we began to notice breathing problems. The first time he had pneumonia, he tested positive for RSV. A lot of kids get that so nothing unusual there. But then he got pneumonia again and again and he still didn’t have good head control so the hospital staff became concerned and ordered a head CT. I will never forget a young neurologist who informed us that our child had global brain atrophy and in a moment of spectacularly poor bedside manner asked us if we knew what “retarded” meant and, “Oh, by the way, we need the bed. You are discharged and have 20 minutes to clear the room.”

We had been told that these things just happen and we would likely never find out a reason. But a wonderful geneticist ran tests and we discovered that our child had partial trisomy 11:22 (as it was known at that time). My husband was determined to be the carrier and after speaking with family members and their test results, we were able to trace the carriers back five generations.

We started physical therapy, but Atle also was still eating very slowly, having frequent pneumonia and breathing difficulties. He was being hospitalized at least one week out of every month including a life-threatening bout with tracheitis. He was tested several times for aspiration during this period but the test was always negative.

A job opportunity took us from our home in Canada to Wisconsin when Atle was three. Our first week in our new home was quite eventful. Atle had his first seizure while in the bath and stopped breathing. Resuscitating your own child is something I pray you never need to do. He was flown by helicopter to UW Madison Children’s Hospital. I am still thankful for their wonderful and thorough staff. More tests were run and the aspiration was finally proven. Atle received his g-tube on his 5th birthday. He was 25 lbs. I remember the look of relief on his face when he was tube fed for the first time. Finally, he could be satisfied without pain. He had been hospitalized over 70 times at this point with pneumonia. Unfortunately, he also aspirates his own saliva so he is still at great risk.

At this point, we moved down to North Carolina. There have been many more hospitalizations since. It was discovered that he only has one kidney and as he grew, the kidney has not kept up so he is in stage 3 renal failure. The renal failure affected his bone density so he broke his arm, his ankle and he also has scoliosis and kyphosis. He was having reflux aspiration resulting in Nissen fundoplication surgery. He had malrotation of the gut that was repaired surgically. As well as numerous ear tube surgeries and a severe fungal infection of the ears.

Atle is currently 28 years old and has a comprehensive routine to maintain his lung and renal health. He uses a therapy vest to loosen mucous twice daily, four nebulizers twice daily, medications for blood pressure, seizures, prophylactic antibiotics, probiotics, hypothyroidism, hyperparathyroidism, calcium, vitamin D and we also carefully monitor his fluid intake. All of these treatments have been paying off. Up until a recent hospitalization for Covid in February he was two years hospital free!



But that is just half the story. The real story of Atle is how smart and fun he is. Atle walks but does not talk. He uses signs, an iPad and gestures to communicate and is remarkably talented and making sure he gets his point across. He loves animals and knows all of their ASL signs. He plays Miracle League baseball, rides horses and plays sled hockey. He can do puzzles, dribble a basketball and help with chores. He loves music and leads the clapping in church. He is basically famous in our town as I cannot take him anywhere without people knowing his name and saying hello!



Friday, 11 March 2022

Spring, Growth, Community and the Bonus Years

 On March 21, 2022, Maia, the Goddess of Spring, turns 27 years old. 

She's been in our lives 22 years longer than predicted. These are the bonus years. And this girl - she continues to be amazing. 


The other day, we picked her up from her group home where she has lived since becoming an adult. Without words, she shared how happy she was. She giggled all the way to our house, she giggled at us, our dogs, and giggled all the way back to her home. When she is happy like that, my husband and I talk about it after she leaves, remarking on what a good day she had, and how amazing it is that she is still relatively healthy and happy.

I always get reflective around her birthday. As she gets older, this hasn't changed, but the way I viewed her birth and her life, has.

If you have read my book, you know how much I initially struggled with her diagnosis. But, I also reflect so often, especially when talking to all of my C22C friends (and they really are such good friends), just what all these bonus years have brought to me.

You see, we have this fantastic online community where all of us continue to celebrate our children's achievements, marvel at the video posts of kids with Emanuel syndrome who are signing or even using words, taking out the trash, using alternative communication, roller skating, putting on makeup, or singing and dancing, and I just think, wow. 

Our community also has hardships.

In the past weeks, we have lost two young adult members of our community, both of who were living with Emanuel Syndrome. We all feel these losses profoundly, as we would the loss of family members. 

Recently, with the war in Ukraine - we have rallied our community to help surround with love and hope - and some money - one of our families who is living there and whose son is sick. All of us are tied to their well-being, sick at heart for them, and sending them encouragement daily.

Our community is beautiful. It keeps me going. I do not know where I would be without this community - one Maia created for me - and which continues to grow and fill every corner of the globe - and my heart.

We are there for each other, to celebrate and hold each other up virtually around the world. Language doesn't matter - things get automatically translated. We are a beautiful, multicultural blend of families who come together from around the world to share a unique bond. Our children tie us together in a powerful way. We are family.



Maia. My heart and soul. Here she is, unassuming most days, making me marvel at her life and what her birth created in this world, 27 years later.

It has always been very present in the back of my mind just how fragile Maia's life is. But these are all bonus years, and I am grateful for them. Maia continues to make me reflect on how far I have come, how much she has experienced, how many good things she has brought to my life, and how important she is to our community.

For her birthday this year, Maia told us (through the process of elimination and choosing via online ordering) that she wanted new shoes. She's getting two pairs that flash and sparkle, fitting of her personality. She was positively grinning when we made the selections together.

On the occasion of Maia's 27th birthday, I wanted to share this excerpt from the end of my book which I wrote about her, 

Raising the Goddess of Spring: A guide for parents raising children with rare chromosome disorders

This really remains true for me and always will. 

About Maia, the Goddess of Spring

"As explained in Greek mythology, Maia was a spring goddess that represented the forces of growth and the return of the sun. This was my lesson. I did not know when I chose her name at the age of 13 what it meant; that Maia would be actually born on the first day of spring, and that she would embody this meaning for me. Maia prompted within me far more personal growth than I could have ever imagined when I first touched her tiny pink fingers and looked into her eyes through tears of despair. I was just a simple young woman when I became her mother, naive about the world, and about what a person can overcome, accomplish and embrace.

Maia was the gift to me that I didn’t fully appreciate for many years. She broke me, but yet, she made me. Maia forced me to conquer my fears, my anxiety, my feelings of inadequacy as a mother. She turned me into the person I have become and drove me to do more than I thought was possible. In that sense, she has had more power and influence as a human being over my life and the lives of so many others than I could have ever imagined. Maia is more than her diagnosis. She is a powerhouse, and I am proud of her. I am so proud of all that she has overcome and that she can still smile and melt your heart despite all of it. It may not happen right away, but your child, regardless of their diagnosis, will become the best part of who you are. You will come to see beyond their diagnosis and any grey clouds that colour your view in the early days. Your child will help you embrace, in all its glory, the return of the sun."


This book not only shares my journey with Maia, but includes stories and comments of 65 other members of our group, as well as information on the basic genetics of chromosome disorders. If you view the book on Amazon, there is a preview available with the table of contents. 

Please note that all proceeds from this book go directly to supporting Chromosome 22 Central. A growing community of amazing people. Thanks for taking the time to learn about my amazing daughter and for your ongoing support for the families of Chromosome 22 Central. 

-Stephanie



It will all work out...eventually!

Avalon: You two are gonna keep doing things as usual. Booth: Sometimes you gotta settle for second best. Avalon: By the way, my cards tell m...