Little by little I have contimplated removing this blog and printing it out to keep for the good and bad memories (our journey). A keepsake of all the triumphs and bumps we have dealt with within the past five years since Aiden was born with this rare (Apert's) syndrome. However, I am still on the fence on whether to remove the blog, since I do know that there will be many more journeys and struggles I will want to share, especially the amazing triumphs Aiden will hopefully continue to make. I know my posts have been rare lately but for a few reasons: Life has been pretty good thankfully and we have been moving along easily "Thank You God!", Facebook sharing is also another, and then just a desire to have a slight bit of privacy (haha).
I laugh at the privacy part but if you have a special needs child you may get it! Between therapies, school, doctors, home educators, and coordinators in and out of our home on a daily/weekly/monthly basis makes me feel our life is always on display. I do struggle with privacy and the desire for advocacy. It has been a gift to meet other families who have a child with Aperts and their family. While others share their story, it makes our journey not feel so isolated and alone. Support is the most wonderful thing when going through any struggle one may find themselves in. There is always a struggle and no matter whether how big or small it is, it all means something extraordinary when having someone stand up and lend a hand of support.
I have been struggling lately with the lack of faith in other human beings. Nothing negative has happened to us personally, but watching how people behave, teach their children, and not own up to their own mistakes and take responsibilities for their own actions has truly perplexed me and made me draw within. I pray daily for those negative people. I also pray to find those remarkable people. I am really working on doing my best to not judge others, but work on myself to become a better wife, mother, daughter, sister, friend, and confidant. I can't change the world, but I can change me. It is a delicate balancing act to not judge and to keep and refrain from allowing certain negative things from entering into mine and my family's life. So, if I do have a New Years resolution, it is to walk stronger and closer to God and to see the love around us through his eyes. I also would like to be as genuine as possible. In this social media "artificial" world, people seem to present themselves and their lives in a way to make all look wonderous. However, in reality, we all should know that their is a natural order to everything. No one is exempt from life's misfortunes.
Here is to a New Year of trying not to judge, working on myself, loving life and my family even more, and paying it forward in hopes someone may help continue the beauty mankind can exhibit.
A huge thank you to all that support me and my family!! (you all know who you are). One special person did an amazing thing for us/ Aiden over Christmas which still melts my heart! There is also a special kind of thanks to the ones that are strangers that we have come across that have been kind, patient, and giving to my family, especially Aiden. It isn't easy raising three kids that are all at different age levels and then one with 'special needs' and that looks different (which is hard for me to see). So far, God has been very kind and led us in the direction of people who have been accepting with only a minimum of kids that have been out right rude. I will say this, Aiden has found his voice and he doesn't mix his words if he doesn't like someone or how someone is treating him. Here is hoping this will continue in the Fall when we try him out in public school again.
Oh, I bought the book (Wonder by Palacio) for my family to read. When I am done, I am hoping to pass it along and have the book continue to be passed and read by as many people (kids and adults) as possible.
The other day, on the news they spoke about a charity called Baby Face that helps transform children's faces that were born with some sort of disfigurement. There was another side to the discussion about therapy and that cosmetic physical changes don't always help and that in retrospect can hurt some children emotionally even more. However, the overall point was plastic surgery and bullying. Bullying was happening to many of these kids due to their physical differences, which of course made me think of Aiden. For Aiden, his surgeries are not just cosmetic but are needed to live. Nonetheless, the discussion about plastic surgery due to bullying versus therapy made and makes for a great discussion. The fact people of all ages bully still astounds me but it is real and unfortunately, I don't see it stopping. Some how we have to teach ourselves and our children to believe in themselves and respect themselves enough to know that certain people look for others to bully just because of their own insecurities and dire need to feel superior. How I wish this world was different.
Our Wonderful Beautiful boy
My silly up to no good three ;) lol
Link to KSLA's Adria Goin's special about raising awareness for Apert's syndrome that our Aiden got to be a part of is :
Running to raise Apert Awareness: In the words of Adria Goins
In pure delight and awe over all the cameras
Loving being center stage with his giggles
Enjoyed meeting Adria Goins of KSLA
A big thank you to Adria Goins for making Aiden feel so welcomed and showing him all around the KSLA news room. He was in absolute delight. Aiden never gets tired of seeing himself on camera!
The many rounds Aiden can go before getting tired of his four wheeler. I think he rather run down the battery than actually elect to get off of it. As I look at him flying around on it, I know it is a matter of time before he out grows this one and gets a real gas motorized four wheeler. However, when that day comes, he will not be driving around the front yard in that one.
Halloween is creeping up fast! The boys seem to have MineCraft always on their brain. Aiden especially likes the idea of being a mini creeper. However, I have a different idea all together for Aiden. It started when Aiden tried playing me to get out of school work. During this day of 'working' me to not do work, Aiden found himself being drawn on. What can I say, I got bored and had a washable marker next to me, so I got to work on showing him all about his leg bones. Aiden ended up loving it and learned a few things too which is always a plus. Nonetheless, Aiden has not forgotten about that awesome bone drawing I did all over his legs because today, he ran to me with marker in hand to draw all the bones on his legs and feet again. So, needless to say, I have decided with or without his complete approval, Aiden will more than likely go as a skeleton for Halloween. There will be an outfit though that has the skeleton bones all over which hopefully I can find that glow in the dark too! I can't imagine trying to really draw all over him because he laughs hysterically the entire time I am drawing on just his legs and feet. Just maybe Aiden can have his way next year and go as a little MineCraft creeper then ;-).
Today he came to me with marker in hand, for me to draw bones on his legs again! Slowly...he will start to learn what each bone in his legs are called :-)!
Fast drawing for an unforeseen lesson on bones. Guess who ended up loving it!?!
Aiden, who is almost always smiling, unless he's not getting his way. Go figure! ;-)
Ready to climb
Lately, I find every reason not to blog and put off all the undesirable duties I can. I have been, honestly, very overwhelmed homeschooling Aiden. This is not because Aiden is one of the busiest kids or that I cannot figure out how to reach him. Those two issues are actually the easiest things to overcome, but my true issue is how to pull it all together and be happy and secure with what I am accomplishing with Aiden. He is a smart little guy, with maybe just a mild delayment here or there, except for speech (articulation) being his biggest hurdle. I feel in many ways that I am letting him down or failing him by not putting him in school with his so called peers. Aiden loves kids but yes, there are those dreaded underlying issues that accompany public school, too many issues to count sometimes. Nonetheless, we will be trying out Kindergarten next year and he will just be turning six, so he should not be the oldest at the very least. Now as for being the oddest, maybe?, with a huge smile on my face while I write this, for only reasons a mother might understand that. Further, we will indeed need to address his class and school about Aiden's outward differences and how despite the obvious, Aiden is a typical busy, stubborn, and independent boy who loves to play, have fun, and has no time for busy work. This is where I hope, that just maybe being with other kids that he looks up to and plays with, will give him the incentive to find busy work (learning!!) all that more fun and worth while.
-I will say I am very amazed daily at what Aiden is taking in and what all he really is learning at home, despite the fact he likes to hide it from his homeschool therapists. Truly, Aiden will definitely test anyone's limits!
To address the above title: Craniofacial Awareness Month is in September and it is coming to a quick end. I have done very little to truly address this issue besides a couple of things/ pictures on my Facebook page. Thankfully, my family has learned to live quite normally with Aiden's syndrome and Aiden himself has learned to endure all he has to go through like a champ. For Aiden, Apert's syndrome is just something he has and knows nothing different. There is not a week without therapy(s) or a month without at the very least one doctor's appointment. Aiden stays busy! Daily there is always something but that usually is the life with just having kids. We live very normally, we feel now!, and take as much as we can in stride. Aiden has been free from major surgeries for a couple of years now and that has definitely helped Aiden and the whole family. However, we live realistically that it is only a matter of time before the next major surgery will be scheduled. I promise you, when you have a child, especially one with special or different needs, you learn to appreciate everyday with them and know that life is fleeting and that every moment is important with all your children, family, and friends. Life is a treasure and full of choices, good and bad. I try to keep my head held high and surround myself and my family amongst positive and healthy people, who are uplifting. No matter where we go, there are those typical stares from kids or adults, but I ignore most of them because it feels we are always on the run and I refuse to allow the most ignorant rude people into my life, much less my children's lives. I know I have blogged about all of this before but it is all true. I love my three kids and my wonderful husband who I would be lost without. God has granted us a life and it is what we decide to do with our life that will truly count. I can't change the world or everyone's view point on any type of the too many "-isms" out there. Nonetheless, I can say, I will stand tall and speak up for my children and others I see mistreated as well. Once Aiden reaches the age where he can speak up for himself and teach others, I will do my best to keep my mouth shut, if possible, but I will always stand beside him and be his biggest fan.
I do not get the hate so many people have for one another or the jealousy, insecurities, and ignorance people continue to spread and use to bully others, to make themselves feel better. How do you honestly feel better about oneself, while putting someone else down?! However, I do know we, as parents, are our children's role models and we have the biggest influence on what are children see and learn to do, how to handle themselves in situations, and how to treat others. We all make mistakes, but we are capable of righting a wrong, no matter how difficult it may be to correct that wrong. An ongoing struggle for me is that I am still learning how to handle people (children or adults) who stare at Aiden, with the best positive results. It is not always easy to know what to say to a child or grownup because each circumstance can be extremely different. I do have a few go to sayings, phrases, attitudes, and facial expressions to hopefully help diffuse any negativity that is being affixed onto my son. I have found it somewhat difficult telling Aiden not to stare when he sees others that are different, because people stare at him so often. I think Aiden sees it all as just part of it. However, I try depending on time allowed, to have Aiden say hi and then explain what the difference is and how the person is normal, yet different like everyone else, and that no one likes being stared at. I love the situations where Aiden can talk to others with different disabilities. Kids are very curious and I always take a deep breath for them to give them a smile and have Aiden say hi to break the ice and let them see Aiden as an actual kid. Kids curiosity stares do not really bother me, nor do they seem to catch Aiden's attention. Unfortunately, this has not always been the case and Aiden has felt those negative awkward stares, which will frustrate him into refusing to say hi and ignoring the person or persons. What can I say, I don't blame Aiden! We all have to defend and take care of ourselves and our feelings too, so I try my best to respect Aiden's response and move on and not to push Aiden either. Thankfully, Aiden gets to be surrounded more often by loving and accepting children and adults.
I have been truly lucky to have kids that haven't seen differences as bad! They are not free of mistakes or bad choices but they are learning that we all come in different packages. Whatever our package is, it is what makes us special and should be appreciated because we all are blessings from God. Though God gave us a choice on what we do with our life, so here is to the ones willing to learn: " Acceptance of others is key for everyone!" We can see outward differences but we don't always know about the inward differences someone may have. Tolerance, patience, acceptance, and love should be what we strive to live by, so our children will see and hopefully learn to follow in those same footsteps. How can we ever truly become a world with peace in it, if we don't hold our own self accountable for our own actions and also, what we are teaching our children. It all starts from somewhere! ;-)
Good reason to be very cautious with your little ones after having dental work! Aiden was still very numb when he bit a huge chunk of the inside of his cheek. Apparently, the dental office forgot to send home with us a bag of things to help prevent this but wow... this has been an experience! At least my brother pushed me into acquiring about preventative antibiotics, which they did immediately call in after seeing the first pics. When his cheek hurts he cries like I have never seen and says hold me!! This is a kid who has had very invasive surgeries and handled everything like nothing could or would stop him.
(2nd day), it looked like he got socked in the mouth :(
Starting to heal (day 4)
I have found a wonderful array of books by author Loren Long. So far, Aiden and I love the main hardbook called Otis. Just recently I bought Otis And The Puppy.
It is really hard to find books that Aiden will let me read "fully" to him, participate in, and answer questions about. However, these are perfect for Aiden. Maybe it is because he loves tractors because his Paw introduced him to tractors at such an early age. Maybe because the main character is a moving vehicle because he is fascinated with all vehicles.
Well, I just thought I would share :-), since I know I can spend hours in a book store looking for just the right book that Aiden would find interest in.
6/29/13: had to add two new pictures of two more books I bought that Aiden loves!!
Otis books by Loren long
Had to go back and buy this book today. As soon as I got it home and showed Aiden, he immediately wanted to lay down with me and read it together. (Well, me read it to him really ;-))!
Too cute and it is a rhyming book. So as I read it and stopped, Aiden would say the word that went along with it. He did awesome! This is a colorful picture book with quick cute rhymes and has a nice storyline too.
Not his favorite but he did like it!!
Aiden finally turned five! He never seemed to really like or want to be four because he would always tell people he was three or five but never four. Maybe it was his lost year but one that truly wasn't lost but adored.
Having a child that looks different to others can make life complex but to us he is as normal as normal can get. Aiden is our beautiful boy. I am grateful for every day and especially every birthday I am able to spend with Aiden and of course, my other two, (Zoe and Joseph)! They give life that silver lining. Also, life has become even more vibrant with this one busy little guy, Aiden! There is many more steep mountains to continue to climb with Aiden's syndrome, but we will never sway from his side. This family is in it together for the good, bad, ugly, and outstanding! Family is everything and I wish we had more of it. Nonetheless, I am truly blessed.
One of the most precious things to hear is my children's laughter! It can wash away all the stress of a day.
Further, all I want for Aiden is the same for his sister and brother, and that is happiness. --Happy #5 Aiden! You are amazing and a wonderful beautiful boy, who is loved unconditionally! I am so blessed and thankful you have Zoe and Joseph as your siblings. May you three always stay close and never sway from each others side.
Aiden's 1st birthday
Aiden's 5th birthday! and prayers for many many more!!!