A Day In The Life Of A Special Needs Parent

When you are raising young children/infants you make it through that phase of the life cycle knowing that the struggles associated with that stage of life will end, but when you have special needs children the extra demands placed on you physically, financially , and emotionally often do not end, in fact the challenges are often escalated and it can become so overwhelming and exhausting. Not only do you have the normal struggles of life, but you are faced with spending hours making and attending doctor and therapy appointments to get your children the help that they need, dealing with insurance companies, trying to assist your children with all of their daily living special needs, and trying to educate yourself and others about their disease. There remains little time or energy to take care of yourself and cultivate relationships and friendships that you really do care about and long to have, but they just get moved to the back burner because you are in survival mode thus leading to isolation. When Rachel got her feeding tube they ask me to complete a survey. Some of the questions on the survey had to do with isolation. I am beginning to understand more and more the reality of this struggle when you have special needs children. While other families move forward living the life cycle of a “normal” life, you are stuck in the first phase of the life cycle and it becomes very challenging to find time for other people or find others that you can relate to and have things in common with you. The children with special needs have this same struggle. So many people have been SO good to our family and have reached out to our family in great love and kindness on many occasions and for that I am so grateful. I was just venting and hoping to be the voice of reality for so many of my friends who struggle with this on an even a greater level and shed some light on the struggles that we face. Somehow we summon the strength to make it through the day and get up the next day and keep putting one foot in front of the other. 

Kindness

 

Welcome to Holland

 WELCOME TO HOLLAND

by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Spirits Will Emerge

President Joseph Fielding Smith explained that “all spirits while in the pre-existence were perfect in form, having all their faculties and mental powers unimpaired. … Deformities in body and mind are … physical.” (Answers to Gospel Questions, comp. Joseph Fielding Smith, Jr., 5 vols., Salt Lake City: Deseret Book Co., 1979, 3:19.) Physical means “temporal”;temporal means “temporary.” Spirits which are beautiful and innocent may be temporally restrained by physical impediments.

If healing does not come in mortal life, it will come thereafter. Just as the gorgeous monarch butterfly emerges from a chrysalis, so will spirits emerge.