Our friend and neighbor bought a case of green light bulbs and asked the neighbors to change their porch light or shine a lamp in their window in honor of Daphne and Mitochondrial Awareness Week.
I was absolutely blown away with this gesture and did not think of it myself.
She said Home Depot will give a “refund” if you buy these to support awareness weeks.
Here are a few of the houses 💚
Since school has started, so has all of Adelaide’s activities.
Gymnastics
Art
Soccer
Mid year Cheer
These keep her busy 4 nights a week, 4 hours one evening with a soccer game on Saturdays.
She absolutely loves her activities and has always excelled at school with perfect grades even with juggling a very busy schedule.
Good parenting? Mama genes? Or just a great and exceptional kid?
Even with our craziness and the above is just Adelaide, Daphne has therapy 4 days a week and Rich and I play soccer one night a week and TRY to take a run or two midweek we still manage to have great family time.
I will share some of my favorite pictures from the past couple of weeks.
*as you can see even though the news of Daphne’s Disease is horrible and dealing with her day to day life is not always easy and requires lots of planning for both kids we have not stopped living our lives which I think is very important for mental health which I believe is the key driver of your overall health.
Xoxo
From a mama that earns her glass of wine
The Mito Family Social was…
Eye opening
Amazing
Sad
The families that came have been battling with Mito for much longer than us and are so comfortable in talking about their journey. I admire them immensely for this.
As the first family arrived with a 12 yr old boy in a wheelchair with a vent tube in his throat, I almost lost it.
I ran to the car to get my sunglasses so I did not upset the parents or the child.
The second family had two bouncing boys that did not have any noticeable limitations.
The third attendee was a 33yr old woman who again did not have any noticeable limitations.
The fourth family arrived with another wheelchair bound boy, 7yrs old.
All of the children were wonderful which really helped me keep a positive outlook.
The 12yr old was a normal boy on the inside but stuck in a body that was failing him. He was chasing Adelaide around, wanting gum, getting fruit chews and not happy about it and acting like he couldn’t hear us. He could not speak well, had a feeding tube, could not walk well and had other symptoms from the disease. He was diagnosed at 8years old and prior to was a “normal” boy running around, riding motorcycles and talking freely. His parents are doing an amazing job with this guy, his sense of humor and loves shows in his personality.
I cannot begin to understand how his parents must feel and how they dealt with the change.
They said he has not asked why they can walk and he cannot. I don’t think I could handle that question if I was them.
The 7yr old is defying all odds as his mother lost his older brother before 1 yr of age to the same disease. This guy is very sweet and nervous around strangers and said to have the mentality of a 9month old, but I saw so much more in him. He can walk with a gait trainer and can unbuckle his seatbelt and take his arms out of his arm straps. His mom is doing an amazing job and he has an older sister who ran around with Adelaide.
The bouncing boys…such cuties, one has a feeding tube that has worse symptoms than the other and was not diagnosed until he was 4 1/2, he is approx 6-7 now. His little brother has the same disease but milder and no feeding issues.
This mom was really able to relate on the importance of routine, proper nutrition, rest and staying hydrated.
The woman was the first person that I have met, that could speak on the disease and how it makes her feel and symptoms she is developing.
She expressed how exhausted she feels and cannot find the energy to go to the gym. Her hearing is starting to go and she cannot find work due to her limitations with rest needed and she has a teaching degree.
I will not share any photos from the day unless the families say it’s ok.
The mom’s were all shocked to hear Daphne does not have a feeding tube and has not been hospitalized for sickness to date.
I hope I did not just jinx myself and can keep her strong and healthy.
This winter has me terrified though!
I got to catch up with a dear friend tonight who shared some exciting news.
I haven’t talked to this friend in awhile I guess.
I mean pre MRI for Daphne.
Which in my world seems like a lifetime but it’s about 3 1/2 months.
A long time even for me, as I love my friends dearly and usually always find time to catch up with them and make and extra effort, most of the time.
She asked if we got a diagnosis.
I held it together for the highlights that I can generally do except for “those” times.
Then she said “come on Des, we’re best friends and I know you, how are you doing”
And well…
I wonder if I will ever be able to talk about Daphne’s diagnosis without crying.
Friends come into your life for a reason a season or a lifetime.
Xoxo
From one sad mama
Daphne is loving her new teeth.
So much that since she can’t talk or won’t talk, she grunts or whines or now…bites to get what she wants or to show her displeasure with you.
Adelaide plays really well with Daphne.
Daphne really loves playing with her but Adelaide can also make her mad and now she can show her the frustration.
Eek! Sorry baby girl but your lil sis was mad.
Only one week in Sept is Mitochondrial Disease Awareness, this year its the 18th – 24th.
On my Facebook page I am making the awareness for the entire month as the number of people I have encountered are clueless on the disease.
I cannot necessarily fault them as I was the same way so I am going to take this time to educate all that pay attention.
My post today is simple….
What are Mitochondria?
Mitochondria are often called the ‘cell’s powerhouse.’ They are specialized compartments within almost every cell. They are responsible for producing 90% of the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce energy.
What is Mitochondrial Disease?
Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy. As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended.
Imagine a major city with half its power plants shut down. At least, such conditions would produce a “brown out” with large sections of the city working far below optimum efficiency. Now imagine your body working with one-half of its energy-producing facilities shut down. The brain may be impaired, vision may be dim, muscles may twitch or may be too weak to allow your body to walk or write, your heart may be weakened, and you may not be able to eat and digest your food. This is precisely the situation people with mitochondrial disease find themselves.
Mitochondrial disease can affect any organ of the body and at any age. Symptoms are extremely diverse and often progressive. They include: strokes and seizures, muscle weakness, gastrointestinal disorders, swallowing difficulties, cardiac disease, liver disease, diabetes, blindness and deafness and susceptibility to infections.
Source: www.umdf.org
I have been very busy lately and have not even checked the Hypotonia Group I am a member of but amazingly enough when I do there is ALWAYS a post that pertains to a thought or an immediate need I have.
A mom posted about this product and I think it is so clever.
I am can’t wait to get one and try it out. They have some other really great products on there as well. I love this as well (so versatile and compact).
I get really irritated when my husband and daughter just lay Daphne down next to them while they do something else like watch TV or read a book.
I keep telling them she needs to be upright to play not laying there like a vegetable. She needs to be engaged and interacting and learning as much as possible.
Of course just laying her there is easier because she can’t scoot, fall over or require much attention.
Don’t get me wrong there is a time and place for laying flat and floor play to help her rollover and push up with her arms but, not on the couch or the bed. Those surfaces are too soft for that.
I hope you can share this site with other families that may benefit from this.
XoXo
Desiree
So I am feeling a little sad.
Adelaide’s school year is starting and all the kids are super excited and wanting to share what teachers they have.
I mean the number of texts Thursday at 5pm when the teacher assignments were released were a little nuts. But I admit it got me excited too.
Thank goodness I am not going to school these days. I don’t think we had this anxiety or excitement and I don’t think I could handle it or the disappointment of not getting the teacher I wanted.
Adelaide seriously has the best outlook of her age that I have ever encountered.
She wanted one teacher, then a second and the one she received was her third pick. My heart broke a little for her but I say you get what you get and you can’t pick your teachers. Just like life, it is can be unfair at times and you have to figure out how to roll with it.
Man, so glad I am the parent preaching these words and not having to live by them.
I hope she continues to be as strong and confident as she is today.
So back to my other emotions….
We hosted a BIG pool party with the new pool slide we got for Adelaide over the weekend and it was a huge hit. All the kids had a great time, only one bump on the head and one bee stung kid.
That was a huge win considering there were 20-30 kids.
What just broke my heart more than I let anyone know was my friend who has her first born starting Kindegarten this year and he will be in Special Ed.
She doesn’t get to share in the same excitement as the other parents.
She doesn’t get to ask “ohh…what teacher does your kid have?!”
She doesn’t get to hope for a certain teacher.
She just says oh he starts Kindergarten but he will be in Special Ed.
My heart breaks because I saw myself in her shoes with Daphne starting Kindergarten.
I don’t want that.
I know it is selfish.
But I want Daphne to have the same experience as Adelaide.
I guess I have a goal to strive for.
To get Daphne to the stage of “normal” so she can hopefully get to experience this.
Here is a picture from the party and the 1st Day of School.
Call me mean but I kind of like making Daphne Mad!
She is so darn cute and I like the fact that her brain processes that she wants something and cannot have it.
She understands the word No and puckers her bottom lip out cuter than I have ever seen.
Now she does not listen to No much at all, it’s a work in progress but seriously how many almost 15 months olds do?!
Adelaide was a very trying child and Daphne is following in her footsteps, this time I kind of welcome it so Daphne seems like a “normal” baby.
I often play videos of babies giggling for Daphne and she loves it.
I was finally able to get her on camera giggling.
I hope you will want to play this over and over as much as I do.
Life is RADD 