Hello friends, so here’s the thing, I may not always write correctly. I may not always write about things that people enjoy. I write this blog for me, I write it because I enjoy it. My attitude is if you don’t like it, don’t read it, no one is forcing you to do anything that you do not want to do. Be happy in your own life, so that you don’t have to constantly criticize others, be happy and don’t read things that you do not enjoy.
Okay now that that is out of the way. The days are certainly getting hotter down South, and summer vacation for my oldest kiddo is approaching quickly. I am making another summer bucket list with him to decide all the things we want to fit in this summer. We will be learning and having fun all summer. So I will be posting our Summer List in a few days as soon as we finish it up. What are your plans for the summer, I would love to hear about it. I hope everyone has a fabulous weekend, enjoy.
So I am starting to organize my life, I am starting to organize my home, I am starting to organize my children and my husband. I feel like when I am not organized my mind gets cluttered. So I am in search of the perfect bins to organize my linen closets and my pantry, so far no luck. I don’t want to spend $12 for one bin, since I need so many. So I will search far and wide until I find them. I tried the dollar store, but they are so cheap and flimsy I decided it wasn’t worth it.
If anyone has any advice on this please let me know.
MEMORIAL DAY WEEKEND
We spent our Saturday with my husband’s co workers and their families. It was nice to meet new people but a little difficult for me because I am so shy. As I have said before most people who meet me for the first time think that I am a bitch because I am so quiet and stand offish. So hopefully these people didn’t think that of me, I try so hard to feel comfortable but it is extremely difficult for me to open up and to act like my true self.
JUST KEEP SWIMMING OR NOT
Our pool filter broke, on Memorial Day weekend which was a big huge bummer. I got my bathing suit and towel and sunscreen all ready and went outside and realized it wasn’t working and the water was getting all gross. So because it was a holiday weekend we have to wait until Tuesday for someone to come out and fix it. Oh well, such is life.
Loving my kitchen, loving cooking and trying out new recipes. I love having the space to create things that my family loves, it gives me a feeling of accomplishment.
I am trying to make time for myself. I am slowly learning to allow myself the time to do things for me and do the things that I enjoy. It is extremely difficult for me to relax. It is extremely difficult for me to justify spending time or money on myself. I could be doing something with that time or that money for my children. I am slowly begining to learn with the help of my husband that I am worth it.
So let me know how you organize? Are you looking forward to summer? What’s your favorite summer recipe? How do you take “ME” time? I look forward to hearing from you.
There are days when I hate Down Syndrome, there are days when I just want a normal life, there are days when I just want my daughter to walk, to talk to me, to act like a typical almost 2 year old. When I realized yesterday I was going to have to fight for services for my child that came so easily to us in New York. I was infuriated. I was so angry. I fought for her and I won. I am so happy I didn’t just take it. I am happy that I spoke for her. I stood up for her and she will receive what she needs. I have a feeling it will be a fight for the rest of her life to get the things she needs and deserves.
“It’s simple, just make people happy,”words to live by. Zach Sobiech was a young boy who passed away on May 20 from his long fight with osteosarcoma. He turned to music to help him get through his darkest days and wrote a song called Clouds. His message is simple, live your life to it’s fullest, don’t miss out on anything, tell the people you love how much you care, and just make others happy. May God Bless the Sobiech Family and Zach. Watch the video of this wonderful young man and his beautiful family, it will change your life.
I am a special needs mom and I am responding to the article in the NY Post.
Dear Rich Entitled Manhattan Moms,
You want to pretend to be a Special Needs mom for the day so that your little darlings don’t have to stand in line at Disney World. You poor poor thing, it must be so hard to have to stand in line for any longer than 5 minutes, it must be so hard to have to discipline your children for more than five minutes while waiting in line, oh and what about the heat and the sun, we wouldn’t want you or your offspring to break a sweat or heaven forbid get a sunburn, I am so sorry you have such a hard life, it truly must be so hard to be you.
If you want that “Special Pass” at Disney I truly believe you should have one, but first there a few requirements I think you should have to complete before you are awarded the “Golden Ticket” as you seem to think it is.
I want you to walk in my shoes, I want you to see what it is like to give birth to a baby, a baby you have wanted for so long, and have them tell you that she has Down Syndrome and if that isn’t bad enough she needs open heart surgery before she is 3 months old or she will die. I want you to know what it’s like to have to drive your baby to the hospital knowing they will cut open her chest and operate on her heart. Sit by her bedside night after night with no sleep praying to any and every God to help your sweet precious baby. You are probably thinking clearly that is enough to earn the ticket, well nope I am sorry you are not quite there yet. You will also be required to visit numerous specialists with your child, for example you will have to bring your child to the cardiologist once a week for a few months, sometimes twice a week, then you will graduate to every two weeks, then once a month, then every 3 months, then every 6 months then finally you will only have to go once a year, and that’s only the cardiologist, there are endocrinologists, pediatricians, Ophthalmologists, Neurologists, just to name a few.
Wait not so fast there is a lot more, you will have to fight with insurance companies and doctors and anyone else who is not being fair to your child. You will have to be your child’s advocate. You will have to always be there, can you do that, can you cancel your fabulous lunch dates, your yoga classes, your shopping sprees, your spa dates. You will be lucky if you have a haircut once a year, so embrace the pony tail it will be your new friend. There will be no time for what you want or need, it is all about your child. So I am sorry but you just might go grey or look unkempt.
I hope you are okay with being stared at because this happens a lot, people will stare at you and your baby, not because they are thinking wow she looks awesome for 36, no it’s because either they feel sorry for you, for your child or they are thankful that they are not you, maybe who knows why they are staring but they do and they do it a lot. Oh there are also the rude comments, you may need to toughen up for this, hope you are able to let things roll off your back because people can be really mean and hurtful.
Oh we are not done yet, get cozy because there is more. I sure hope you had your Wheaties today because now you have to deal with helping your child do all the things that “normal” children do with ease each and every day. Now you have to have all of her therapist appointments, there is Speech because she is almost 2 and still doesn’t talk, then off you go to the Physical Therapist because she’s 2 and she still isn’t walking. Occupational therapy is going to help her too because she is 2 and still can’t feed herself. In between therapies you will do everything all of those therapists have suggested everyday because you are hoping and praying that by the time she is 3 maybe she will do all of these things. Maybe she will walk, feed herself, and say I love you Mom by the time she is 36 months old.
Getting tired, well there is also cooking, cleaning, driving your other children back and forth from school and activities, helping with homework, grocery shopping, Dr appointments, being a good wife, dinner time, bath time, bed time, laundry, etc. Then you get to go to sleep and get up and do it all over again.
Now pay attention, this is the most important part. You are going to worry ALOT, because your child is prone to getting multiple illnesses, and the thought of your child going through anymore hardships is heart breaking.You will never want to send her to school because kids can be cruel and the thought of anyone making her feel bad about herself numbs you.
Okay so here is the really important part, I really hope you have been paying attention. You are going to know true love, you are going to know how to love unconditionally, she is going to teach you things that you never knew about life, about love, about what is important. As soon as you have that feeling, then you may have your special disney pass. Maybe after spending a day in my shoes or any special needs parent’s shoes, you will look differently about what you are doing. Maybe you will be so thankful and happy maybe you will realize how truly lucky you are to have a healthy child.
The Mom of a Special Needs Child
Yesterday was Mother’s Day, and it was the best Mother’s Day since I became a mom 7 years ago that I have ever had. We were so busy all weekend. We visited Downtown Disney on Saturday afternoon, had dinner there and just walked around the shops. While we were there, there was a group of young people with Down Syndrome performing on stage. It was perfect.
Our new early intervention journey is scheduled to be on its way today. Someone will be coming to go over paperwork today. I know how thankful I should be that it is available to her. I know I should but it is so hard having people come in and out all the time. It makes me feel different, not normal. Sometimes I just wish she could develop in her own time, do it at her own pace, not have to work so hard to do what other kids can do naturally. It bothers me a lot. I put on a brave face, an I can deal with it face. Inside I am screaming to be normal, screaming to not have to deal with people staring, people asking questions about why she is so small, people asking “what is wrong with her?” Sometimes i just want to scream how unfair it is, how unfair that my sweet little girl has to endure people and their ignorance. In case you are wondering, yes someone actually asked me what is wrong with her, my response to her was, “Nothing, what’s wrong with you?” People are always so shocked when I come back at them with a response like that. People also think that parents of special needs kids can’t hear or don’t have any feelings or are not really people. Because I CAN HEAR YOU if you are whispering something about my kid 2 feet in front of me. The best is the “Oh I don’t know how you do it?” Well what else should I do? What else am I going to do? She needs me to take care of her, she deserves love just like anyone else, and I am her mother and I love her with all my heart.