A Personal Story…

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.

It’s Finally Here!

It’s August 19th!  Today is the day, it’s Sophie’s much anticipated 5th birthday!  For her, today is all about the party, and celebrating with friends, and the cake, oh the cake, and of course let’s not forget about the presents picked out just for her!

August 19th is the day that we welcomed Sophie into our family, and we would not be the family we are today without her!  For me, today is all about celebrating the amazing girl that is our Sophie!  Sophie is a “one of kind”, that’s what my mom likes to say about our gal.  Sophie is passionate about many things!  She has a heart the size of Texas and a laugh  just about as loud.  Sophie is very independent, being number three in a family with four kiddos, she has learned that “just a minute” is really longer than a minute.  She is spirited, and does not lack character!  She is seriously funny!  The funny thing is she has no idea that she is so funny, which makes it that much more…funny.  She has the ability to make you laugh one minute and cry the next.  She is a girly girl and can mess with your emotions like that.

For those of you who know our girl, you know that she has a very distinct way of speaking.  I often wonder if crying every time she rode in the car during her first year of life has anything to do with the low, slow, deep tone in her voice way of speaking.  She is extremely a-r-t-i-c-u-l-a-t-e, and uses mature phrases like, “well, actually…”,  and “let me tell you something…”, and “basically it is sorta like…”, and “I am not really interested in…I would rather…” all of the time!  She loves to share her ideas with anyone and everyone.  She can talk your ear off!   With a Theresa Brewer like voice, our girl loves to sing!  She is constantly humming or singing a tune, I love to listen to her when she does this.

Sophie has two speeds, on and off.  She has given up napping and we have given up trying to get her to nap.  Sophie has two of the greatest older siblings  in the world (I know I’m a bit biased) to keep up with and the most special baby sister to take with her on her quests.  The dynamics between all four of them is magical, they need each other and feed off of one another in a very awe inspiring way.  Each is a key player in their relationships, but I would have to say that Sophie possesses extra special powers that can dominate the relationships.

Sophie’s interests are so many…  She has an all or nothing kind of  personality, which makes it easy to know what she likes and what she doesn’t (not sure who she gets that from?).  Soph has a talent for drawing, often frustrating her preschool classmates with her very representational art.  She and Megan spend hours on the floor near our “art center” drawing and crafting away.  I used to feel bad for throwing away any of my kiddos art, until the mass production of it started in my kitchen a few years ago.  I am a sentimental kind of mama, but honestly these girls can draw and we would be drowning in paper!   Sophie loves to take pieces from a game or toy and use them in her various play plots, she is creative like this.  Because of this my obsessive compulsive tendencies for keeping things in order, especially game and puzzle pieces, have been challenged. I force myself to keep things in perspective, but let me tell you she sure knows how to get  me.   She is very territorial, and we feel that has a lot to do with her birth order and her age.  She is always defining what is hers, writing her name on everything!

Sophie is one smart cookie, one unique little girl, one very talented human being, one very loved sister, daughter, granddaughter, and friend! 

Happy 5th Birthday Sophie,

we Love you!

We’re walking, yes indeed, we’re walking….

and pushing a wheelchair, and pulling a wagon, and most likely riding two scooters!

Dear friends, family, & faithful blog readers,                                                                                      

Get your walking shoes on!!! Please join us for the first annual United Mitochondrial Disease Foundation Energy for Life Walkathon when we gather in honor of Lucy Grace Marlett and all of those affected by mitochondrial disease for a fun morning of celebration and hope to raise money for mitochondrial disease research. Please plan to join our team For the Love of Lucy and our family on Saturday, September 25, 2010!!

The Energy for Life Walk: DelVal will be held at Campbell's Field Stadium in Camden, NJ on Saturday September 25, 2010.  The walk kicks off promptly at 9:00am with registration beginning at 7:30am.

There are many ways you can get involved.  You can register to walk in the event.  Register online at www.energyforlifewalk.org/delval and join our team For the Love of Lucy !   You can volunteer to work at the event or help set up the night before.  You can make a secure online donation to help us meet our fundraising goal in honor of Lucy and all of those affected with mitochondrial disease.

Take your participation to the next level by gathering pledges to raise even more money from neighbors, friends, and co-workers.  If you are unable to attend that morning, you may still support For the Love of Lucy by joining our team as a virtual walker and by joining our pledge raising efforts on-line and making a donation in honor of Lucy.

Every 15 minutes a child is born with a mitochondrial disease.  Right now, there are no known cures for mitochondrial diseases.  Due to the devastating effects of mitochondrial disease on key body parts such as the brain, muscles, heart, and lungs, many of these children will not survive their teenage years.

Is there hope?  The answer is a resounding yes!  We are inspired by your love and friendship, by your concern and support, and by your participation in helping us raise money to continue funding very necessary research that takes us closer to a cure for Lucy and all of those affected with mitochondrial disease.

Again, thank you for helping support our team For the Love of Lucy and the UMDF, we hope each of you will be able to participate either in person our as a virtual walker on Saturday, September 25th, 2010!

With love and appreciation,  
All the Marletts
Drew, Nicole, Jack, Megan, Sophie, & Lucy too

*If you would like to visit the Camden Aquarium after the walk on September 25th, discount tickets are available for purchase (tickets are discounted from 21.00 to 15.00 for adults and 17.00 to 11.50 for children 2 and older).  If you are interested, please contact me at ndmarlett@aol.com  and let me know how many tickets you desire as the UMDF needs to order these discount tickets ahead of time

Medically Speaking…

 

I think that our van has worn a path  from our driveway to the valet parking pull-up at DuPont hospital.  Since April I have made two or three trips (40 minutes one way) a week to visit this or that specialist or have this or that test or procedure done for Lucy.  Although we love that DuPont Hospital is there for us, we could use a break from it for just a few weeks, or if possible, a month would be even better.  Just think of all of the free time and extra gas we will have, oh the places we could go and the people we could see….

Seriously, we are hoping to enjoy the next month of summer vacation and take a much needed break from the medical world (somebody,please, knock on something wooden)!  Medically speaking, we have a few loose ends to tie up but nothing that can’t wait a few weeks or… ah hum…till next month (again, please, keep knocking). 

Speaking of loose ends there are a few things I will update you on since I believe I made mention of some of these things in past posts.  We have had A LOT of labs drawn on Lucy recently, all related to metabolic stuff.  We had Lucy’s ammonia levels checked after Dr K made mention of high ammonia levels causing irritability in some of her mito patients.  Lucy’s ammonia level was the opposite of high, she is lower than the normal range, not really sure what this means.  What we do know is that elevated ammonia is not the cause for her irritability, not that I really believe that there is a single cause for her being irritable.  Like so many things with Lucy, having abnormal labs that are abnormal are not really that, dare I say, abnormal.  What we do know, is that Lucy’s labs that look at how her liver is functioning have always been a little off, and ammonia is one of those labs that indicate liver function.  The liver is a large organ that requires a lot of energy to function, kiddos with mito are energy deficient and thus the liver is often one of the organs affected by this disease. 

One of the changes that we made since coming home from Atlanta is increasing Lucy’s med dosing on her Leucovorin for her cerebral foliate deficiency.  Since having nursing help this summer, it has been easier to remember the afternoon dosing, (thanks Helen).  Have we noticed a difference in Lucy, humm…good question.  I think that perhaps…maybe.  How’s that for an answer?  Like all things with Lucy some days/moments are better than others, it is so hard to tell with her if doing one thing has made a difference.  We have been working hard with Lucy’s therapists at implementing strategies for behavior management.  These strategies are helping!  One of the strategies we use a lot with Lucy is the strategy first this___, then that____.  So often she just needs to know what is expected of her, or what is going to happen in order to get her to comply.  Lucy’s receptive ability is amazing, she understands everything you tell her! Very often she is unable to verbally express to you with words what she is thinking or feeling, hence her frustration and behavior.  Add to all of this, the inability of process and take in information from the world “normally”, and…well…it’s no wonder we see in her all the behaviors that we do.   I think that increasing her med dosing is helping her brain to process better, thus allowing her time to take in and approach the world on her terms.

Therapy has been moving right along.  Lucy is progressing, albeit at her own pace, but progress is progress no matter what the pace.  Speech and language is still our biggest delay, but she is using more words to express herself.  She is starting to put the word more with something, for example “mooor yayooos”  that’s Lucy talk for more Cheerios.  She has about a twelve word vocabulary that she uses regularly, we are hopeful that she will expand upon this vocabulary, but it is amazing how few words you really need to get your point across.  She is quick to blurt out one word and repeat it over and over consistently until she knows that you understand what she is telling you. In the not so distant past you were lucky if she said anything once, much less repeated it.  Even with the hopes of her communicating verbally,  we are moving forward with looking at augmentative communication devices.  When we were in Atlanta we asked about speech delays in mito kids and if they had any insight for us.  They stressed to us that mito is a progressive degenerative disease and we should continue with our process of teaching Lucy to use a communication device.  We are hoping to trial a Vantage Lite soon.  We are also looking into the the ACC program Proloquo2Go for the apple i Pad/i touch/i phone.  It has many of the features of the devices we have looked at but is available on technology that is more universal and at a much more affordable cost.  

We had an evaluation for aquatic therapy last week, we are all anxious to get Lucy in the pool.  It has been proven that exercise is beneficial for kids with mitochondrial disease, but ever so challenging on so many levels.  Therapy in the pool helps to overcome some of those challenges, and creates some new ones as well, but we feel the positive will out weigh the negative.  We are waiting on a pool slot to open up at DuPont so that we can get going with this, hopefully something will open up soon, preferably on a Monday or Tuesday morning:).

We had Lucy’s walker fitted for new handles which help her to push it easier and also improves her posture.  Combine that with her new leg braces, and lets just say she is working at finding her stride.  Her new orthotics are more supportive and wrap around her ankles and legs more than her old ones did, she is having to get used to wearing these.

We have not received any information back from the sleep study we did last Wednesday.  They told us that we should have the results in two to three weeks.  Seriously, they only have a few hours of data to analyze.  Dr R said that he would follow up with us as soon as he knows anything.  One of the things we are looking for is to see if Lucy is experiencing any central apneas, this is when the brain forgets to tell the body to breath at night, thus causing her to wake.  They were also interested in monitoring Lucy’s Co2 output, heart rate, and respiratory rate.  Mito kids do not covert oxygen into energy correctly, combine this with hypotonia, weak muscles, and to put it simply this can be a problem.

A few weeks ago Lucy had a barium enema test to rule out the possibility of any abnormalities in her colon.  This was never a test we had done on Lucy, so Dr. R felt that it was a long shot but necessary test to have done.  If in fact she had any abnormalities, Dr R informed us that there are some treatments that could be done to fix the problem.  Fortunately or unfortunately depending how you choose to look at it, there were no abnormalities detected.  What has resulted since doing the procedure is one almost “regular” little girl.  Because they injected A LOT of barium into our little one we were very proactive with using enemas and laxatives to get rid of the barium in her system.  Barium turns into concrete if left in the body too long.  Lucy was cleaned out, and ever since has been going at least every other day with the assistance of Miralax!  You can cheer for this, we are!

We had a very detailed appointment with Dr R last week and discussed with him our visit with Dr. S’s group in Atlanta.  We feel for the first time in Lucy’s life that we are in the right place medically speaking for Lucy!  We have a great team of specialists that are overseeing the care and treatment of the littlest love in our life.  This is a huge blessing!

Medically speaking, I think I have updated you on all of the medical events of the summer.  Thanks as always for your thought and prayer, love and support!

PS I took these pictures in the spring and love them, just thought I’d share.