My oldest daughter daughter was recently asked to share her perspective at a Joni and Friends Caregiver's Day. She has given me her permission to share her notes. Maybe you will find some sort of encouragement here. If nothing else, many moms commented to me on the relief they felt when she noted that many of the things from her childhood that I felt would embitter her, she has no recollection of! WHEW!
In elementary school my parents started a night called date night. My sister and I took turns going out with one of my parents to spend some time alone. Again the attention we received was key. Anything from painting pottery, to nights browsing at Barnes and Nobles, to beating my dad at mini-golf created that bond that I needed from my parents. Yes, they were exhausted, but the effort that they put into our relationship was something necessary in order for me to grow.
Not only did they spend time with me, but they encouraged me to explore my interests and talents. I remember Saturday afternoon art classes, piano lessons at my aunt's house, field hockey camps, and many more.
My parents also based my life around Christ. Every night we snuggled into my parents’ bed. We sang songs, read devotions, and prayed. It was these little things: McDonalds, Date Nights, extracurricular classes, and devotions that shaped me into the person I am today.
Up until middle school, I felt as though I had had a typical childhood. Nothing was different about my family. We loved each other, ate dinner together, had fun together, nothing different. I don’t know whether it was the fact that my parents couldn’t shelter me anymore, or that I was growing up, or the fact that I was hitting puberty that I found middle school relationships to be so rough. Figuring out who I was, amidst the disability around me, acted as a barrier between me and many other people, including my parents. I owe them a lot for dealing with me during my middle school years. I was beginning to see that my family was different than many others and noticed that I had matured in life lessons at quite a different rate compared to my peers. It was hard for me to relate to others. They just hadn’t gone through the same things I had. Little things like being stuck at school after a field hockey practice because my mom was at a doctor’s appointment with my sisters frustrated me. I just wanted to be accepted by my peers, not be singled out for making my coach mad. My parents’ continued to press me to work harder during this period of time. I had questions and they allowed me to ask them. My parents allowed me to cry when I was frustrated, they didn’t get mad at me for being frustrated at them, but rather encouraged me to push through. Another thing my parents did that helped me develop during my middle school years was bring my sisters to school events. By having my sisters there it forced me to not be embarrassed, but embrace my family’s predicament.
After getting through these things I was able to go into high school somewhat sane. I had come to terms with things at home and had a pretty positive outlook on life. I realized I was different. Instead of this being bad, my parents showed me it was good. They taught me that my strong independence, compassion, and beliefs would allow me to take flight in my journey of life. It was during my high school years that my parents would provide me with support once again. They encouraged me try to new things like tennis, set painting, choir, graphic design, chapel committee, etc. Yes, at times I felt guilty for not being home to help, but I knew it was what my parents wanted for me. Some Fridays nights I would go out with my friends. Again I would feel guilty, but it wasn’t until recently that I realized that my parents would have felt just as guilty keeping me at home to help. Another addition to my family that helped was Kendra. My parents decided that we needed home health care aids. It was just too much to handle on our own. Kendra was our first aid and she is now one of my very best friends. Without my parents decision to get an aid I wouldn’t have been able to get my homework done or felt free to be a part of extracurricular activities. I owe my thanks to my parents for making that decision and the many aids who have been in my life since then. I was in high school when I realized that many kids just went home and relaxed, I had never experienced that and with the aids I was able to succeed not only in school but in time to develop relationships as well.
My parents always signed up for Joni and Friends family retreats, they provided me with an opportunity to feel “normal”. In my high school years, Joni and Friends started a siblings group. It was there that I was blessed with support. Although I had attended camp in past years, I hadn’t connected with vey many people. Although there were many people my age, many were STMs and were just like the people I interacted with in my high school. It was with the siblings at camp that I was able to form deeper friendships.
My parents also encouraged my sister, Brielle, and I to do more things together. And I can say this with one hundred percent confidence: family is my life and my love. Without Brielle, I wouldn’t have turned into the person I am today. We have experienced so much together that she is one of the only people who can understand me. So moms, this is important, allow your siblings without disabilities to bond. Give them their space and time. They will have each other to confide in as someone who truly "gets it" with your family dynamics.
And here I am today, a sophomore in college. What have my parents done correctly? I’m not sure yet… I’m still in this stage. But I can say we struggle with typical college going away stuff. It’s the strangest feeling having freedom at college and then coming home to a house run by my parents as well as a house run by disabilities. While at college my mom is always open to talk on the phone late at night. Just like in middle school and high school, I still struggle with feeling different from others. Even being within a major related to disabilities, many of my peers don’t fully understand it. Through it all my mom is still willing to talk. My dad on the other hand encourages me with random texts and flowers on my birthday. They both mean the world to me.
One strength of siblings I know is flexibility. Things are going to happen. By the point that siblings become my age many have developed this skill. Flexibility affects the scheduling of my life and what I take on. Some nights I may have plans to do go out, but then need to stay home. That’s flexibility. That’s life. Maintaining a balance in outside relationships and with your family ‘demands’ requires flexibility. Flexibility is key as well as allowing and planning time for both. It’s funny because my friend and I were just talking about this. In high school our lives were more separate, we had home and then we had our friends. But now that we are in college, we almost expect all our friends to accept our family's lifestyles and differences. We have come to the realization that we are different than other people and have become proud of it. Also with both of us being 19, beginning the whole dating/marriage thoughts and process, we expect our potential husbands to love our siblings with the disability. Rather than being ashamed, we make it a quality that is a must in a guy. They also have to realize the amount of time spent helping at home is going to affect our relationships with them, for living with disabilities and loving our siblings produces a completely different lifestyle.
Despite it all, no matter what, many siblings can become frustrated. For if you do take on a lot you get frustrated and just want a “typical” life. If you don’t help out you feel guilt. And honestly this is something many of your sons and daughters will have to struggle with and work through for themselves. There is no concrete answer. For myself, I love my sisters. Most of my favorite memories involve them. But I also have to realize I need to develop time for myself: a job, friendships, church life, and my hobbies. A lot of times when I come home, whether it be this past summer or in high school, I would spend a half hour or so with my sisters, eat dinner, and then do homework. Another thing I like to do is plan “dates” with my sisters. By doing this I can plan on spending time with them and still get things done. They love getting out, even if it’s to Wal-Mart. Spending one on one time is key.