To my brother, I love you forever and always <3
If you did not know, I am a middle child. I have an older brother (28) who is completely deaf and has down syndrome and a younger sister (23) who is currently getting her masters at SDSU. Growing up in my family was definitely not what you would consider typical or normal; but honestly what is “normal” anyways. Ok, let me start with a little background on my brother…
First off, if you are not familiar with Down Syndrome, it is a condition in which someone has an extra chromosome. Typically, we are born with 46 chromosomes but babies with Down syndrome have an extra set, chromosome 21. This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby. (https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html) A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. (PS.. personal opinion, but people with down syndrome are the cutest and sweetest people alive!!)
According to the Centers for Disease Control and Prevention, approximately one in every 700 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 6,000 babies with Down syndrome are born in the United States each year. (https://www.ndss.org/about-down-syndrome/down-syndrome/)
Questions answered by my momma about pregnancy, birth, post birth…
1. what were the complications during preg? At 33 weeks I started bleeding and having contractions, during an ultrasound they discovered fluid around the babies heart and lungs so I was sent to San Francisco for further testing. With all the tests performed a cord blood test determined the baby had down syndrome. With the fluid and down syndrome the doctors did not believe he would survive the birth. The doctors had said we could wait and deliver naturally or go to the hospital and start the delivery process. We decided to go in right away because we were told it might give the baby a better chance of survival. Soon after he was born his body started absorbing the fluid. He was in the hospital for about 10 days and then we were able to take him home. We learned that the fluid was most likely caused by a virus I had contacted, not the down syndrome. The virus is what we know as hand foot and mouth which is not a life threatening virus but for a pregnant women it can cause a miscarriage. The doctors think I might have been further along when I caught the virus and the fetus was strong but a strong indicator of his severe hearing loss.
2. why did you have to go to SF hospital and how was the experience – see above. The doctors and nurses were wonderful! We were very lucky, no awful stories to tell. For us the down syndrome was secondary. We were all just happy that he was alive and doing well.
5.how was the first few months with him? The first few months were good but a little scary and emotional. We got affiliated with someone to guide us through what is available for us/him right away. We met many wonderful families and educators in those months that helped so much. One thing that I will always remember is being told he is a baby first! A sweet beautiful baby that happens to have down syndrome. We were told to never place limits on him, all things are possible. If you place limits on any baby/child they will not achieve. So that is what we did. We treated him like we would any child, although he was our first so nothing to compare to, but that was a good thing. Josh did so well in all aspects but when he was 8 months old I questioned his teacher/specialist about his hearing. Through further testing over the next few months we got the devastating diagnosis that he was severe to profoundly deaf. The fear really set in at that point. But his amazing and wonderful teacher Tom Whitesides was always so supportive and helpful and loved Joshua and Joshua loved him
Before I go any further, let me preface by saying my brother is THE LOVE OF MY LIFE and will ALWAYS hold a special place in my heart. He has made me into the person I am today and has allowed me to gain some amazing qualities not everyone will get the privilege to develop…. such as…
patience, kindness and supportiveness, acceptance of differences, compassion and helpfulness, empathy for others and insight into coping with challenges, dependability and loyalty (especially when it comes to my family and the people I love). For this, I am forever grateful! BUT- life was NOT easy!
As the “older” (even though I am technically younger, I will always consider myself the older sister) of a sibling with special needs, there is a lot of things that I have come to realize and reflect upon now… that I struggled with (this article in the Washington Post lays it out amazingly: https://www.washingtonpost.com/news/parenting/wp/2016/12/20/8-things-siblings-of-children-with-special-needs-struggle-with/?noredirect=on&utm_term=.410635d0eb38)
and caused me a lot of mental health issues growing up (and to this day still trying to overcome- but I think we all will always be learning and growing and overcoming things from our childhoods and our pasts!).
I am going to use the “eight struggles” found in the article and expand upon them from my own experience:
1.Feeling like they need to be perfect. + (3. Having a different idea of family and home)
I’m not sure if this is where my perfectionism started, but most likely. Right away, or for as long as I could remember, my brother instantly gravitated to me. He wanted me to hold his hand when we crossed the street, me to help him tie his shoes, me to make him a snack, me to be with and play with vs my parents. He loved me… I mean I was his sister, someone else like him. I did not mind, but then again it’s all I knew. I was “mommy’s little helper” from day one. I guess I did not realize how much pressure this put on me.. But I also did not know any other life.
Having a son with special needs is a lot of work- both mentally and physically, and my brother was also always sick growing up. With both my parents working full time, and being just amazing people- I wanted to be “perfect” for them. They did not need more stress, more drama, more worry then they already had. I wanted the perfect grades, to be the perfect swimmer/soccer player, the perfect daughter…
2. Feeling like they can’t express their feelings.
I guess this is why I never wanted to express my feelings- i needed to “stay strong” for my family (and why it’s still so hard for me too). Honestly, for the longest time, I did not even think I had feelings (I know this sounds stupid, but no one i knew talked about feelings- we just did what we had to do for my brother and for life). Seeing what my brother had to go through every day, and what my family had to go through everyday (think constant staring, constant “advice,” constant doctor appointment, constantly chasing down my brother) – I did not “deserve” to feel bad for myself. I was healthy, I did not have a disability, I had 2 strong amazing parents who gave me everything, I should be happy and appreciative, right?
4. Feeling as though their problems are minimized
Yup… my problems were nothing compared to my brothers or parents problems! For a long time I had soccer to deal with my feelings and anxiety. It allowed me to let off steam, get out of the house, and brought me so much joy… until I started getting older and that wasn’t enough. I guess I needed some sort of coping mechanism… and this is where, I think, my eating disorder stemmed from (and why therapy was and still is so hard for me… It’s still so hard for me to open up, because, honestly, I do not even understand my feelings. For so long I pushed them down, that now… I don’t even know what they really are, or how to express them, or that anyone cares to know about them- this is why it’s hard for me to truly get close to people.. But also, if i love you, you will ALWAYS have my love and you can always count on me!).
8. Feeling like they must grow up quickly + (5. Feeling isolated)
This Kinda touches on the first part.. From day one I was “mommy’s little helper,” so being “just a kid” was never something I did. I never minded though, I love my brother and my family and I have always had a helping heart. I wanted to help, I wanted to be there for my family, I wanted to do my part. However, this did cause me to grow up too fast. Friendships were hard for me. I had grown up a bit too fast, been through things, seen things, heard things that made me see the world differently than most kids. Kids were mean, I found that out right away, so being with my family, were I could be my true self, was just easier. No one else really understood my life, and sometimes it was just too hard to explain. My family was and always will be.. My best friends.
6. Dealing with intolerance early and often.
Oh man did I learn a lot about people and this world growing up with my brother. Lets just say people are MEAN, and have no compassion or understanding (do not get me wrong, not everyone is, I know some amazing people, but the mean ones always stand out more). Yes my brother looks very different (it’s very obvious he has a disability), acts different (I mean he can not hear anything in this world or communicate his exact needs- how would that make you feel??). However, this also made doing every day or “regular” things not so easy. We never traveled to unique places, we never went to fairs or really crowded places, we did not go on spur of the moment outings or adventure… because nothing was ever easy, bringing my brother anywhere is a production and sometimes too much trouble then it was worth. It has also brought a lot of tension to my parents and my family. Its stressful, it’s hard, its emotional- but all we have is each other to lean on, especially as we are all getting older.
I tend to feel guilty now sometimes. That I am not home or close to home to be able to help my family more. When we were younger, it was “easier” in a sense for my parents. They had a child at an age where, even if normal, they would still be taking care of, and my sister and I were home to help out. But now, my brother is 29, older and more difficult, and my parents life still revolves around taking care of him. This is a time that all their kids should be out of the house. They should be rekindling their love, going out with friends, going on spur of the moment date nights and happy hours. They should be able to go on work trips or friend trips and not have to worry about anyone. But that’s NOT the case.. And it BREAKS MY HEART.
And now you know why my family is so close, and mean the world to me. Yah we drive each other crazy and are NOT perfect, but we are all we got. No one else knows what we have or are going through except us.. And that’s a pretty special thing.
…There is so much more I can say and explain and express… but this would be a book by the time everything was out. So for now, this will do.
PLEASE feel free to reach out with any questions or if you support. I always wanted someone to lean on, so I will always be here for others that need it.