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A Personal Story…

August 25, 2010

Back in June, when Drew, Lucy and I were in Arizona I received an e-mail from the Pastor at our church asking me if I could please write a story for him about what it is like raising a child like Lucy, a special needs child.  I thought I would share it with you…

Dear Nicole and Drew,

“Could you write another story for me, one about how you approach your daily challenges with Lucy? I am the camp pastor at a camp next week at a camp for families touched by disability. My job is to both teach and encourage parents who are worn out by the challenges of caring for special children. I thought a personal testimony might be helpful in one of the talks I am giving. It is about how GOD uses weak and frail people to accomplish his purpose in the world. That’s not to say you are weak and frail, but I am sure you know what it means to feel this way, and I am sure you know what it means to wonder how your little girl with her weaknesses and frailties might never the less fulfill a noble purpose in life. In fact I remember you telling about how when Lucy was born you immediately said “this child was born for a purpose.” I also remember you telling me how you end each day and ask “did we do our best” and generally going to bed answering a satisfied “yes”. So I am wondering if you could share some reflections, even if you wrote stream of conscious style and didn’t worry about the polish. I’d love to see how you see GOD turning weakness into strength. How you see him using frailty for something. How you see purpose in disability. Any thoughts, reflections, anecdotes, or whatever you might have to share with me would encourage scores of people next week.”

Wow, first off I want to say what an honor it is that you thought to ask our family these questions. We see ourselves as ordinary people, living an ordinary life, with extraordinary circumstances. By extraordinary, I don’t mean lavish. What I mean instead is that we have taken the opportunities that GOD has given to us, and are choosing to live life to its fullest. We have been given the challenge of raising a “special” child, a medically complex child. We believe that GOD entrusted us with our little one because he trusts that we will provide her with all of the love, support, guidance, and faith it takes to live the life she has been blessed with. Without these beliefs and our belief in GOD, I am not so sure we would feel that having a child with special needs is truly a gift.

All families with children have their daily struggles; add to that family a child with special needs and you just multiplied those struggles by many! It is exhausting work, parenting children; but especially being a parent of a special needs child. Our minds are constantly filled with thoughts and concern that go far beyond the typical daily thoughts and concerns. Our little one, Lucy, has been diagnosed with Mitochondrial Disease, a progressive, degenerative, disease of energy metabolism. Her body does not convert the food she eats or the oxygen she breathes into the life sustaining energy she needs for her body to run effectively. Our minds are continuously occupied with thoughts of how is LUCY going to be able to do this or that, or how are WE as a family going to be able to do this or that with Lucy. We have to regulate her body as her body is unable to do this on its own. Her autonomic nervous system is affected as a result of having mitochondrial disease. Things like appetite, regulating her body temperature, her ability to swallow even her own secretions, and the way her body responds to outside stimuli are a few examples of things of which we need to be conscious. In addition to autonomic dysfunction she has many other symptoms that affect her body. All of her nutritional needs are met via g-tube because her GI system does not process and digest foods normally, her muscles are weak and she fatigues quickly, she has the ability some days to communicate verbally with a dozen or so words and on other days she struggles to be able to say anything. Her energy levels wax and wane all throughout the course of a day. She requires A LOT of sleep, typically sleeping around 18 hours a day. She wears leg braces to help assist her weak muscles, uses a posterior walker for the moments on the days she can walk, and uses a pediatric wheelchair to interact with and see the world. More recently we are dealing with typical two year old behavior in an A typical body, this brings new meaning to the phrase “the terrible two’s”.

Seeing Lucy live her life in spite of all of her daily struggles is simply… amazing! She only knows what it feels like to be her. She is aware of many of her body’s strengths and weakness, and as a result has an amazing ability to compensate. We gain strength in observing her find ways to compensate for her weaknesses! We believe that GOD gives kiddos like Lucy the gift of perseverance! As a result of this, we as Lucy’s parents and family are given the privilege of witnessing GOD’s gift to these children every day! GOD uses special needs children to demonstrate strength and perseverance to others while reminding them to be thankful for the gifts they have. For us, this means never taking for granted the little things. We celebrate every milestone with even more enthusiasm then we would have ordinarily. We have been blessed with perspective as a result of Lucy. What preoccupies too many in this world, is put into perspective when we think about having to live a lifetimes worth of memories in a shorten lifetime. What a gift to be given this perspective!

I stated when our daughter was born that “this child has been born for a purpose.” At that time I was unaware of the fact that our daughter was going to live this extraordinary life. Little did I know the impact that this statement and our little one would have on my life and the lives of so many others. GOD knew, he has plans for all of us! We have witnessed our daughter’s life change our lives and the lives so many that know and love us. Our family has never been closer, and we believe it is as a direct result of having a strong faith in GOD’s plan.

The effect of Lucy’s life on our three other children is awesome! Our belief that GOD trusted us with Lucy has such a positive effect on our children. Lucy occupies more than one fourth of our time, our kids are learning about patience and fairness. Whenever they say “it’s not fair”, we respond back like many parents do but with a twist, “Life is not fair, if it were than you too would have to have everyone else’s problems.” If you ask them what they pray for, they will most likely say “a cure for mitochondrial disease” and not something for themselves. They are learning that in spite of a person’s disabilities, he/she has feelings and emotions that permeate their soul just like you and I. We teach our children that GOD did not give people disabilities as a punishment; instead we believe he gave people disabilities to strengthen and teach the world.

In spite of all that I have written it is extremely difficult being the parents of a special needs child. The daily responsibilities are overwhelming more times than not. The demands on your time and energy are more than you think you have to give. The emotions that accompany parenting these children are vast and vary from the greatest joys to the most intense pain. The relationships with your friends, family, other children, and spouse are forever changed. It is difficult for others to relate to what you are feeling and experiencing, despite their best efforts. Having a special needs child requires you to redefine normal; you have to find a “new normal”. At times it can feel very lonely, and feelings of guilt and worry can overcome you. I heard it said once that parenting a special needs child means that you grieve the loss of a dream over and over. Unlike the typical grieving process one goes through when they lose a loved one, the type of grief that parenting a special needs child brings is cyclical. You grieve the idea that your child will not be a “normal” child, you get used to that idea, but as life goes on your child is constantly faced with new challenges that remind you all over again that your child is not “normal”, and you grieve the loss of another dream.

It is by the grace of GOD that we persevere on our journey through life. He has drawn us closer to him by showing us that despite weakness and frailty there is strength and purpose in each and every life he has created, sometimes found even more in those who appear to have less.

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Heidi said...

WOW...amazing. No surprise, much of your letter I can relate to. So wonderful and inspiring, thanks for sharing. Hugs to all your littleones today, always praying for your dear Lucy-
Heidi & Jack.