Being a Momma is a lot of work. As you could imagine having to juggle a home, children and life itself is stressful. Some Momma's have an extra role, as care giver to a child with special needs. Today I introduce to you Cindy a 29-years-old Momma, who is married with 3 children; Jasmine (Jassy)-11, Jonathan Jr. (Johnny)-7 and Emma-5. Her family has a special kind of love, for a very beautiful and special little girl...one who is as her Momma would say "differently-able"!
My husband, Jonathan, and I have been married for 8 years going on 9, but have known each other since 1st grade! Another fun fact is that we started dating in the 5th grade. We had our first baby, Jassy, when we were both 18 and seniors in high school. :-)
Jasmine has ROP, retinopathy of prematurity. It is a condition where blood vessels grow abnormally behind the retina. The scientific name is retrolental fibroplasia. It happens to premature infants. I had Jassy at 36 weeks.
We learned about her being blind one week after her birth. We were told to see a specialist because they couldn't find the "red reflex" in her eyes that doctors look for when they check babies after birth. The specialist confirmed that our baby was born blind.
My initial reaction was shock and trauma to be honest. No one can prepare you for something like that. It was not something that they could have told us in an ultrasound so it was very unexpected. I say trauma because it is very life changing, and hard to understand while it's happening at first.
My life since having Jassy has been a learning process. The hardest time was definitely the first year. Jassy would cry all night and sleep during the day because her times would get switched so to speak. Because she can't see, she doesn't have the sun letting her body know that it's time to go to sleep. This still happens to her occasionally like when she gets sick. We've since figured out how to regulate it as best as we can. Anything else that comes our way we tend to just go with the flow. I have gained so much patience, and I owe it all to my girl.
I handle each challenge differently because no two days are ever the same. Jassy also has a speech impairment, and a mental impairment. So communication is a huge issue. She tends to resort to self injurious behaviors that we call "fits". She will bite and pinch herself, and others when she's upset. That can happen randomly. Sometimes we know what sets her off, and sometimes we don't. I mean imagine not being able to communicate your wants and needs. I would be upset too! The fits and communication issues are the biggest challenges that we face daily.
The biggest blessing of having a child with a disability is the child itself! She is my everything! I consider Jassy my best friend because we are almost always together when she's not at school. I love her so much, and the love that she gives is incomparable. I wouldn't be the mother and person I am today if it wasn't for her.
Our younger two kids are lucky to have her as a sister too. They learn daily that everyone is different and beautiful in their own way. They love their sister very much, and Jassy loves them too! :-)
Routine is super important for Jassy. She gets up really early, and loves to eat a big breakfast. We can't skip any meals with her because then we'll see an increase in fits. (We try to avoid any triggers to the fits as much as possible.) She has to eat 4 times a day! lol Then, she goes to school. Her school routine is super important too. She has amazing teachers by the way! I trust them completely with her. After school she'll play with us, and then in her room. Finally, dinner then bedtime.
The biggest helps in my life are my husband and my parents. I don't know what I would do without either one of them. Jassy loves them all to pieces too! She has a special bond with each of them. We are truly blessed.
My motivation to keep going are my babies; All 3 of them. Knowing that they all need me helps me to keep on pushing when the times get tough, and believe me they do!
Finding time for myself is extremely important as well. I've always been very active in my life with sports and exercise. Just last year I became an active runner. The funny thing is that I never really liked to run growing up! Lol I try to run everyday if, and when I can. Running not only keeps me healthy and in shape, but it gives me the "me" time that I crave. It's almost like meditation or getting lost in your own thoughts while doing something positive. I recommend it to everyone!
The advice I have for others going through something similar or just starting on this kind of journey is just be patient. It may all seem very daunting at first, but the blessings always outweigh any negatives that go on. Secondly, be strong even when you feel that you don't have the strength. You are your child's best advocate. You know your child the best. So whether that means speaking up to different doctors or voicing your opinion at their school, make your voice heard! Lastly, enjoy your baby. They truly are miracles! All though my daughter is seen as "different" in society, I see her for who she truly is, perfection. My job in life is not only to take care of her and give her the best life possible, but to also bring awareness to the special needs community. Most people fear the unknown because they don't understand. I try to help them understand as best as I can.
One of my favorite things to do is get on my Facebook, and go to the special needs parents' community page for Cypress. All of it's members are wonderful parents that share their stories, and experiences about their beautiful kids. That includes the ups and downs. It is also a place to share different events around town that are special needs friendly. I love that page so much and I'm sure there are different ones depending on what area you live in. I definitely wish I would have found this page sooner!
Helpful organizations/resources in Houston are The Lighthouse for the Blind (Houston), DARS, SSI, and Medicaid to name a few. Nationally, I follow the National Federation of the Blind, and the American Foundation for the Blind all of which have websites. There are tons more though! Research is very important.
I hope I was able to help anyone even if it was just a little! If you have any questions or comments please feel free to email me at CinD427@yahoo.com .
And always remember, God is good and you were chosen for a reason!!
We love our Jassy girl!!!
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