When your child is born with an extra chromosome you are often flooded with the things they will never do. Sometimes that is fueled by professionals but often times it is fueled by our own late night internet searches. Our mind is racing to try and understand what having Down Syndrome means and what we can do to help our child over come the obsitcals they might be faced with in the future. That is why I love stories about what our children CAN do!
I love strength in numbers and I love being on a team. When I say team I mean support system. A system in place filled with other people who are on the same playing field. People who are out to win the game! When I run into people who make me feel like I am playing on the right team I have to share their story, their stradegy! There is no right or wrong way to to win and that is why everyones story is so near and dear to me.
This Friday I am here to introduce to you a dynamic Mother and Daughter duo. My friend Karol whom I met early on in Graces modeling on etsy introduced me to these two. She told me I might want to reach out to them and give them a virtual hug! Well that I did and after hearing their story I knew others would be just as interested in their buisiness as I was.
When you were pregnant, did you know Emily would have an extra chromosome?
When I was expecting Emily, I knew from about 6 weeks in the womb that she was going to be special. Before that at about 3 weeks gestation, I began writing in a journal about my pregnancy. I intended to give my journal to our precious child when she had babies of her own. As time progressed, I had to be tested for toxoplasmosis, a condition that can be caused by changing cat litter or by a cat bite, which I had. In the weeks of waiting for the results, the doctor told me that if I had this condition our child could have a small head, blindness, or deafness. I remember telling a dear friend, “I don’t mind a blind child or a deaf child. I just don’t want a retarded child.” Yes, I used the “r” word with my friend. I didn’t understand at the time the great joy a child like Emily could bring. My friend consoled me with these wise words, “God gives grace in time of need, not before and not after.”
As time progressed, my husband and I saw children with Down Syndrome when we were out and about. One time my husband saw a cute boy and said, “Aww! He’s cute! I wouldn’t mind if God gave us someone like him!” My heart went to my throat. “No, please, no,” was my thought.
Many other things happened those short 8 months to prepare us for the most amazing journey we could have ever embarked on! So it was with no surprise that when the doctor announced to me that Emily had a “small possibility of having Down Syndrome,” I was finally ok with it. She was my baby, my precious gift from God. Without skipping a beat I asked the doctor, “So, how do you raise a child like Emily?” He was so shocked at my calm response, he even noted it in my chart. If he only knew the process to get me to that point! And yes, I was ready. Ready for all that a life with Emily had to offer.
I remember the genetics nurse telling us “how far” Emily would progress. Right. Like anyone knows how far any one of us will go. I told her that we would teach Emily to drive if she was capable of it. She responded with, “Well, she could ride the bus.” I laughed inside and wanted to say, “Maybe she will drive the bus!” But I constrained myself.
And so God had prepared us, and would continue to do so.
How has your daughter changed your life?
Life would be so boring without Emily! She brings such joy to us and all who are around her! We have learned much patience, that is for sure. We have also obtained much wisdom in training and raising Emily. God promises to give us wisdom when we lack it, and He invites us to ask Him for it. We certainly have asked for wisdom a lot, and have seen God give it time and time again.
Our son is changed because of Emily too. Born 3 ½ years after Emily, he became her constant companion. For years they were the same height, and many thought they were twins. Now he towers over her and is known affectionately as her “big, little brother.” He cares for her with great love, but is not afraid to “parent” her when needed. Emily loves her brother very much.
What is your advice to new moms with children of special needs?
Most of us have heard the story about the person who plans all their life to go to Italy, and ends up with a one way ticket to Holland. But then they find that Holland has a lot to offer too. Though Holland is different, it is still a country. In the same way, our children may be different than most other children, but they are first and foremost children. They may not have the “spice” of “Italy”, but they have the “tulips” of Holland. Enjoy your child. Find their strengths and capitalize on them. We all have weaknesses. Mine is my memory when it comes to names. But never fear, I simply have to ask Emily, “Who is that person?” And she helps keep me from many an embarrassing moment!
One of the best words of advice about raising a child with special needs was from a mom of a 13 year old Down Syndrome child. Although her daughter had died one year before, this mom knew the importance of the advice she gave. “Brenda, whatever you do, discipline Emily. There is nothing worse than a spoiled special needs child.” At times as we were raising Emily, this was a daunting task. Yet we sought to teach her respect and obedience, not because we demanded it for ourselves, but because it brought and continues to bring blessing to herself. And because we tried to be consistent, Emily has learned to read, write, sew, and even play piano. Oh yes, she sometimes forgets she is 21 and acts like she is 4 again, but a gentle reminder brings her back and she laughs at her actions!
How did your daughter become interested in quilt design?
As Emily was getting older, she was just years away from graduating from home school. I knew she needed a vocation. Being somewhat small, and not looking her age, I wanted to give her something to do that would not only bless others, but give her a hope and a future. One night that “vision” came. I had been sewing 50 exam gowns and matching lap sheets for a doctor’s office when I suddenly felt the need to be creative. I proceeded to take the scraps of fabric and pieced together a small quilt top. Unfortunately, it had a big mistake in it. As I thought about the quilt, I wondered, “Hmmm…maybe I could teach Emily to sew….maybe we could put a “mistake” in each quilt to show her extra chromosome…maybe it would be an encouragement that even though the quilt has a different square, it wouldn’t affect the warmth and comfort of the quilt…and this could encourage parents of special needs kids that their baby would also bring warmth, comfort, and joy even if all their “squares” aren’t symmetrical…” And so, Masterpiece Quilts was born.
We were able to purchase a sewing machine that had a control on the speed of the needle. I began to teach Emily how to sew. It took some patience, but soon Emily was operating the machine by herself with minimal help from me.
Now after over 150 quilts, Emily not only directs the design of each quilt, she picks out the colors that go into each quilt. She also is in charge of stacking the quilt squares after they are placed where she wants them. She numbers each stack readying them for the sewing process. After this, she irons all the prairie points that edge the top and bottom of the quilt. Once we are at the sewing machine, I match the squares to ensure an even seam. Then I hold the corner of the squares and Emily operates the sewing machine. After cutting the threads, she opens up the squares and I place the next one on to be sewn. After each row is finished and ironed, I pin the rows together and Emily helps to sew the rows. When the quilt top is finished, I complete the project like a framer for the artist’s work.
Tell us about your daughter.
Like I said, Emily is a joy to all who meet her. She loves to sing and laugh and hardly forgets a name once she learns it. We have tried to give her many opportunities in her 21 short years. She has volunteered for Vacation Bible School, finished AWANA (a Scripture memory club) and received her Citation award which constitutes having memorized over 900 verses of Scripture over the years. She volunteers at a horse vaulting camp where her brother is the director this summer. Emily loves to read. And she loves music! She finished her Suzuki piano book 2 recital in 2010 and is now working on book 3. Of course, she designs and helps sew her Masterpiece Quilts.
If anyone told me what Emily would do in life, I may not have believed them. But now I know that all of us, when given opportunities to try new things, can grow to great heights. It may not be as high as some, and yet it may be higher than others. We never know. But one thing I do know, taking one day at a time, persevering, finding strengths and capitalizing on them is important.
By the way, Emily’s depth perception and thought process will probably hinder her from ever learning to drive, but that’s ok. God has gifted her in the ways He wanted. And so we leave her future with God. Praying always for His wisdom for the future…and enjoying the “ride” along the way. :0)
Look what came in the mail! The most perfect quilt, designed just for Grace by her new friend Emily! I am so blessed to have people like Emily and her Mom in my life, even if it is over email. To know there are amazing families like theirs on my team is so awesome! Big hugs and kisses sent to Emily for the beautiful job she did in designing Grace her very own quilt.
Welcome back Bridget and Co! We are so thankful for your beautiful designs! Please check this amazing Mama out!
My hubby and I are off to MI with some friends for our Anniversary! First time in 10 years we are leaving town without our side kicks!
Have a fantastic weekend! Make it great! Dream BIG!