Sunday, February 8, 2015

Would We Want to Cure Her?

I had recently read a blog that began like this: If you had a magic wand that could "cure" your child's disability, would you use it? 

The answers varied greatly and I got to thinking that I would like to answer it as well. I also asked Doug, the kids and my in-laws for their thoughts on this. The answers all vary and I love everyone so incredibly much. I am very thankful for their input and thoughts as they helped create this blog post. I am blessed.

Arianna - Age 10½
I don't want her to change. Sometimes I wish she was "normal" so she could play with me and we could actually talk.
But then I think about all the hug-uppies and cungles and I change my mind. I love her so much I'm glad I have her as a sister.
Andrea - Age 14
It's a really hard question, because I don't know what things would be like if she was 'cured.' Would she be happier? Less stressed? Get hurt less?
But my answer is no. I never want Sarah to change, even if there was a miraculous way to 'heal her.' She doesn't need healing in my opinion. She is delayed, both physically and mentally, but she's also the most caring, sweet six year old I have ever met. Why push her to grow up as fast as the rest, when she's perfectly happy growing at her own pace? She's learning new things every single day, it's just taking a little longer than the rest. 
My sister is beautiful. She has the biggest heart, the best hugs, the sweetest words and the most wonderful 'I love you too's' and 'I missed you so much's.' She's perfect just the way she is and I would miss her so much if she changed. 
Joshua - Age 15½
No, because then she wouldn't be who she is.
If there was an opportunity to "heal" Sarah and bring her to 'normal' function, would I want to pursue it? I really don't  know - a part of me would be afraid of messing with who God made Sarah to be, and losing some of who she is in the process. The best I can offer right now is a kind of for-and-against list.

The first premises that would have to be assumed is that the process would be established and safe, and that no harm or distress would come to Sarah in the process... that said:

For 'Yes':  This would be primarily for our benefit, rather than hers. It would mean that we would more free to spend time just as a husband and wife, and with our other children one on one. It would mean that what is best for Sarah school-wise would be more certain, and the systems that are in place would be a better fit.  Her peers may better understand her, and she might not be pushed around to the same degree that we see now. (and foresee in the coming years)

We would not have to prepare to care for Sarah into her adulthood.  We wouldn't have to fear that she might be taken advantage of as an adult.  

As an adult, she would have a better chance of living independently and 'successfully' by society's standards.

For 'No': Sarah is about the most loving person I know. She is not suspicious of others, she is not aggressive or a bully to others. Sarah unabashedly shows her love for people around her up to and including kissing someone's feet. Why would I risk altering those things?

Sarah has taught our children what it is to care for and defend someone who is not like the majority. That people who are 'special needs' also have a lot to give, and that they have value.

Sarah has taught Stephanie and I so much... That even the hard things in life have a blessing for us. That uncertainty can drive us closer together rather than apart.  That seeing the beautiful flowers in a cemetery can ease the pain of grief. That a hug-uppie may not fix everything, but it helps a whole lot. And that sometimes, it's okay to cry about how hard it is to cope with the challenges.  It's good to share with others who have special needs children, and it's good to share life with others because we can grow and help others grow too!

So - would I take the chance to 'heal' Sarah? Probably not.

I think there are two sides to everything and my heart sits on the fence of both. In the end, my answer is what it is. 

For 'yes': 
Like Doug said, if Sarah was cured of all her delays, it would be for our own benefit, not hers. For one it would make some things like homeschooling easier. The curriculums are for typical kids and she would more readily grasp the concepts that I would teach. There would be less frustrations on my end since right now I need to do all the curriculum creating on my own.

I would not worry about what her future will be as she becomes an adult. She'd be able to pursue a career, have a family and live on her own. Perhaps that can still happen but with her delays as they are, her future is much more uncertain. I often think of what her life will be like as she gets older and it occasionally causes me some concerns. It's a scary world out there and I don't know what she would be able to handle on her own. 

She would be able to stand up for herself when circumstances arise and I wouldn't need to explain why she does things her way. She would likely eat normally and diapers would be a thing of the past. So yes, there are some areas that would make life here a little simpler if she didn't have the issues she does. I would love for her to be developmentally on target with her peers, being able to play age appropriate games and talk to them at their level. It would be nice if things were just easier for her.

For 'no': 
Sarah is who she is because God created her that way. She is perfect in His eyes and mine. The things I have learned because of Sarah are innumerable and I am blessed beyond words. She has taught me compassion, unconditional love and grace. I have learned to trust God with her and many times I surrender her back to my Father like we did six and a half years ago when we dedicated her as a newborn.

Sarah has also taught our family how to respect and care for those who fall into the "special needs" category. My children are very aware of others who have struggles and their hearts are so open to them. They have learned how to love in a very different way and I am so proud of who they are because Sarah is in their lives. I have learned to be honest as well. There have been times when asked how things are going and I lay it all out on the line. I don't keep much bottled up inside anymore and greatly value the people who have listened to me. 

Having a child with severe delays and a condition that has caused her brain to grow considerably slower than others has made me more educated on topics that at the time, I didn't even know existed. I have made many friends online who I may never meet but who can understand what I'm going through. All my life, I have loved babies. For as long as I can remember, I played with dolls, doted on my youngest brother and then my four cousins through the years. Sarah is young. She is staying young. She is growing physically but inside my baby is staying a baby just a little bit longer than the rest. She curls into my lap with ease and can still be picked up by everyone in our family. Her little quirks of asking for a hug-uppie, needing cungles and wanting everyone around her are yet other ways that make her unique.

My daughter sees the good and beauty in everyone and everything. She loves anyone who will love her back and her dimpled smile can wash away my tears any time. She also doesn’t know life any differently. She has a family and friends who love and adore her and she sees everyone as good. A "cure" would change who Sarah is and I wouldn't want that for her. It would mean getting to know a new and different person, and I don't think I'm ready for that. I have to have faith that God will see his plan for Sarah through. My life took a sharp turn off the road of "normal" the day we received her first diagnosis in November of 2011. Life is still normal, it's just a different normal than what other's may have.

Ultimately, if I had to chose right now, I would say no. She will continue to grow and learn at her own unique pace and I wouldn't want to change her at all. 
I've been thinking about the question ......and it's a yes/no answer I come up with. Each child only has his/her point of reference- not aware of the things and events they won't ever experience. They live in the moment, unworried about tomorrow. Unconditional love, freely and honestly given. It's the adults, parents who are so aware of what other "normal" children/people go on to experience. The hard part for me is the thought of providing the everyday physical care needed when parents grow old, planning ways to provide care into that future. That's why I would accept a cure.

Ooh, tough one. There are arguments for both sides of that one! Ultimately, I have to say, I think I would chose the cure. As parents we all want what is best for our kids. We want them to have full,
complete, fruitful, happy and rewarding lives. Looking forward I see many struggles and challenges to be overcome, and with God's help that will happen. Having a handicapped brother, and seeing the frustration for him, my parents, and us siblings over the years, I think if there was a cure for him it would have been better. That said, it is what it is. We do the best we can with we are given, and try to be thankful in every circumstance. Sarah is such a blessing in so many ways, and I'm not sure if she was "normal" I would have seen such a beautiful display of pure love that there was between her and Brenda today in church. There are blessings everywhere if we just see them. Like I said, tough one! Just one old fogey's opinion.


Sunday's Song {02.08.15}

To the river I am going bringing sins I cannot bear
Come and cleanse me, come forgive me Lord I need to meet you there

In these waters, healing mercy flows with freedom from despair
I am going, to that river Lord I need to meet you there

Precious Jesus, I am ready to surrender every care
Take my hand now, lead me closer Lord I need to meet you there

Come and join us, in the river Come find life beyond compare
He is calling, He is waiting Jesus longs to meet you there
He is calling, He is waiting Jesus longs to meet you there

Precious Jesus, I am ready to surrender every care
Take my hand now, lead me closer Lord I need to meet you there
Take my hand now, lead me closer Lord I need to meet you there

Saturday, February 7, 2015


The year 2015 is well under way and I'm doing a fine job of keeping busy.

Earlier this week I cooked and created 14 freezer-able meals which means for two weeks I don't need to really think too hard about what to have for supper. I take it that day's supper to thaw, put it in the slow cooker or oven and then I'm done. It's been a great way to reduce some of the late afternoon stresses that come when trying to decide what to feed the family. It also comes in handy when I need to play taxi driver and chauffeur my older kids to their various destinations.

Andrea and Arianna are doing very well in their schooling. They are both quite independent and motivated which makes for pleasant days and quick accomplishments of what they need to do. Andrea continues to work part time at a day home and we love that homeschooling allows this flexibility. She is also keeps busy with two worship teams, one of which she is the lead worshiper. Although there are weekends where both teams require her, she does a pretty good job of balancing the two. Arianna loves making videos with her iPod and has become quite good at what she does. She's also begun reading for pleasure which makes me very happy! Like Andrea, Arianna is becoming a good piano player and growing in confidence with her vocal skills.

Joshua finished his first semester of high school and began the second this week. Unfortunately because his core courses are not semestered, only his options changed and he's still pushing through. One of his new choices; German is his most enjoyed at the time. He still works at Wendy's on Saturday afternoons and this part time job has allowed him to purchase his first car.

Sarah continues to do things at her own pace. Because she is homeschooled and there's no extra support for special needs kids, I am required to look for find, find and create my own curriculum for her. This is not always an easy task for a main reason: I don't really know where she is developmentally. If I had to guess, I'd wager around three years old. Although in many areas, she is moving forward, I see other areas that have not really progressed. Her speech is coming along nicely and I'd guess that other people can understand her almost 50% of the time. The rest of the time, I need to interpret and there's also moments where even I don't understand her. Sometimes her brain knows what she wants to say but her mouth can't come up with the words quickly enough. This will lead to stuttering and at times giving up what she wants to say. I had purchased colored craft sticks and really wanted to find something to do with them. I found patterned printables online but the colors didn't match the sticks I had and the sizes didn't match up. So I took my own craft sticks, and using our 3D printer, I set up the sticks in various patterns and printed them out. The sizes and colors match exactly! I then laminated the sheets and they were done.

The other thing that Sarah began this week was her first "school" type book. I wasn't sure how she'd do with it but for the most part, I'm very impressed. She seems to understand that each object gets colored despite her not being able to stay in the lines. In the moment she remembers the color and we talk a lot about it but it doesn't seem to stick with her for very long. The book quickly moves into shorter lines and the alphabet so I'm not totally sure what will happen when we arrive at that junction. 

Most of Sarah's learning is still coming through play, iPad apps, and sensory bins. Occasionally I need to step back and take a deep breath to remind myself that what she is doing is okay. 

All in all, 2015 is starting out alright. We've managed a few colds (Sarah's lasted 3 weeks) but other than that have stayed quite healthy and I hope to keep it that way.

Enjoy your weekend!


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