12 Oct overwhelmed and emotional but still smiling
Wow! Talk about overwhelmed and emotional. I am doing everything I can to hold it together but man is it hard. I cant stop worrying and projecting and feeling like I’m going to explode with tears. I have to tell myself to remember its all about perspective. I have to see the bright side and not the crazy wicked dark side. Thank God I have such amazing friends and family. We have so much love in our life that I can’t ever complain. We are blessed with a beautiful family and when we all cuddle up together before bed at night I close my eyes and take a deep breath in and remember that beautiful feeling of love. I carry that through my day and all seems better.
The major cause of worry is Cali goes in 10/19 for her first foot surgery. She walks on the insides of her feet and she has very flat feet. She is in pain everyday and even though she is making progress with her balance and walking, she crawls because her feet hurt her so bad. We have tried every brace possible since she was 1 years old and the pain just keeps getting worse. We have now resorted to surgery.
We check in 5am this Tuesday at CHOC in Orange and the surgery is 3 hours long. We will stay with Cali in the hospital for 1-2 days. She will be in major pain and I am hoping the pain meds wont make her sick. She will wear a cast for approx 8 weeks, then move to a walking cast and then to a brace. Once she is strong enough to bear weight we start all over again on the other foot. Final outcome after about a year of surgery/recovery Cali will hopefully be able to push forward on learning how to walk on her own.
Other concerns or I should say “projects”:
— We have been dealing with the school district to make sure Cali is getting the appropriate education that she deserves which let me tell you is the biggest frustration of them all. I feel so helpless up against the teachers and district who all say Cali is in a great program and she doing great. Like we dont know as her parents??? I KNOW if what they tell me is true or if they are bullshitting us and letting Cali sit in her chair in the corner of the class all day learning nothing. The problem is we have to prove it. The school district doesn’t make changes based on motherly instinct unfortunately.
— We meet with the neurologist again tomorrow so she can tell us she still knows nothing.
— We are still in the middle of Genetic testing which so far has shown us nothing. They will continue to throw the darts at the balloon wall of known diseases which is never ending. Who knows if we will ever have a diagnosis.
As I type this I remember the great quote : Be kinder than necessary because everyone you meet is fighting some kind of battle. I know this is true. We are all fighting the battle of life. Its those moments that make us feel good and we remind ourselves to look on the bright side of life and soak in feelings of enjoyment and love. We go on fighting with a smile.
ChadPosted at 07:04h, 13 October
You know how they say everything happens for a reason….as much as I'd like to believe that, sometimes it just does not make any sense. Unfortunately, life is not always fair and more often than not, it is not fair for those most deserving. It is during these ongoing challenges that you need to lean on those that love you and have faith that everything will work out for the best. Life is full of challenges and these will only make you guys stronger. Not to be repetitive, but stay strong and best of luck with Cali's surgeries. I realize I am down here in San Diego, but it's a quick drive up that way…let me know if I can help in any way.
Cristy SpoonerPosted at 18:33h, 09 May
thank you Chad. I am sorry for the extreme delayed response as I just saw this. I am new to our site’s program and havent seen this section. oops. I really appreciate your words of advice and support. It’s what keeps me going!
DavidPosted at 19:15h, 29 October
Cristy: Parents do know the "most appropriate" level of support and interaction necessary for their kids in schools. The school SYSTEMS want to minimize and marginalize a lot of special needs supports even if on an IEP. It is for us, as parents and advocates to expect and demand that they care about ALL of our kids….even the Calis and the Adams of this world. Schools are often only all about compliance where I also am about compassion, for the children, their moms, and dads. If I can assist you in the maze that is the special education service delivery system…please call or email. I have parental expertise. Just remember it is NEVER about the money or cost…it is always about certain kids being treated differently at ever school system in the country….Our parent expectations are fair and reasonable, even if sometimes emotional, which makes US real. Continue to have great expectations for all your girls.
Adam's dad david
Cristy SpoonerPosted at 18:31h, 09 May
I just saw this!! I am new to wordpress i guess! Thank you so much for your message. It’s funny because my husband I were just discussing this same subject for our little one, Ryann who is now in 1st grade. We are going down this road once again and I am not sure I can count on public schools. Ryann is learning and excelling now and I fear she will drown once the classrooms get more crowded as her school years progress. Its a never ending battle !!
LynnPosted at 07:14h, 31 March
I love reading these articles because they’re short but invmeoatifr.
Cristy SpoonerPosted at 18:55h, 09 May
thank you so much!!