Every year that Emily has been integrated into regular education classes I have created either a Shutterfly card or book that I go in at the beginning of the school year and share with the kids. I try to make references to how similar Emily is with the things that she likes to do for fun. I usually try to incorporate some medical details about her and each year I get a little more detailed as the kids get older and can handle and understand so much more. Here are the past few that I have created starting with pre-K. The next blog contains my most recent one for 2nd grade. Please feel free to share this idea or use it yourself!
Every year I go into Emily's regular ed class and share with them a little bit about Emily. I like to compare her to them by using examples of activities that she likes to do that are age appropriate. Most years I use Shutterfly to create a card or a book to tell Emily's story. This year I did a hardcover book that I plan to leave at school all year for the kids to read as they chose. I will also make my annual trip to talk to them the first or second week of school. This seems to help break the ice for the kids and allows them to ask me questions without fear.
A friend of mine, Elizabeth Mennell launched a new online television show geared just toward moms. Each show will have a guest 'expert' and a panel of moms discussing the featured topic. For more information on the show visit http://momslikeus.org/
I recently had the opportunity to go for a walk in the woods with my three year old daughter. It was a beautiful Autumn day in Minnesota and the temperature was abnormally high around 84 degrees. As we walked quietly in the woods observing nature and the sounds we heard I came across a path that split off to the side. The path veered off to the right and I could see that it dropped off fairly steep. I quickly made sure the little one did not run ahead of me as I feared that she would slip and fall down the steep hill. I then noticed a park bench that was right at the edge of the steep drop off so we sat down to rest and take in all the beauty of this gorgeous day. As I looked forward I realized that we could vaguely see a lake below and the beautiful reflection of the sky and trees in it. It was at this moment that I realized had we not take this path to the right we would have missed out on the beauty that we were now witnessing. So, we stood on top of the bench to take it all in before heading off to the original path that lie straight ahead of us. I should probably mention that the straight ahead path was pretty, but did not present us with any additional beauty from what we had already seen on that path to that point. In fact, that path became kind of mundane and lead us right back to the parking lot.
Each day we are presented with paths that may veer off from what we think is the straight and proper path. If we do not chose to take a chance and see what the other path has to offer then how will we know what else the world has in store for us? To some degree we chose our own destiny. I personally have always been a scientific based black or white kind of person, so it is hard for me to realize sometimes that things happen for a reason and new paths are presented to us to allow us to grow and learn.
The choice is up to you. Stay on the beaten path OR take a chance to see something new and write your own destiny!
Most days I do not think much about the many challenges Emily faces. However, there are those few days when all I can think about is: what kind of life is this for her? I am haunted by questions that seem small and petty and by ones that are much bigger like:
When she hits puberty do I shave her under arms and legs?
Does she need to be put on birth control in the off chance that someone horrible takes advantage of her?
Will I ever hear her speak more than a few audible words?
Will she ever walk independently or ride a bike?
Will she find the love of her life?
Will she get the joy of walking down the aisle to marry her future husband?
Will she ever have a child of her own?
Does she have hopes and dreams for herself?
And so on.....
I know these questions are ones that I should not dwell on and many of them are quick passing thoughts, but it can be so hard when your dream of having a child with a joyful and "easy" life are altered. My heart is so full of love for my children and I only want the best quality of life for both of them.
I am very fortunate to be surrounded by amazing family and friends that understand and get what I am going through. I am so thankful to have them all here around me to help lift my spirits when they are down. I am also grateful that my family and friends agree that it is okay to have these thoughts and concerns as long as they are passing thoughts and not ones that I get hung up on. I know it is okay to think "why" and I hope you too know that it is okay to ask the questions of the unknown.
Yesterday we celebrated Emily's 6th birthday. In honor of Emily I wrote a poem for her birthday....
On the day you were born I looked to the sky,
with a joyful tear in my eye.
I thanked the Lord for entrusting me with your life.
I said “welcome to the world, this is your new life!”
I promised to protect you through the challenges you’d face,
But I had no idea just what was in place.
Your body would shake from the seizures in your brain,
I would call out to God to help ease your pain.
I wanted so badly to get rid of the seizures,
So you could have life someday as a “typical” teenager.
Although it was rough for many years,
I always had hope and very few fears.
We almost lost you more than one time,
But you held on to life and showed us you’re fine.
You have taught us so much that I never expected
And showed there’s a lot to learn from the unexpected.
Your beauty shines through both inside and out,
Your love is unconditional and that’s what it is all about.
I wake each morning and still thank the Lord
For my beautiful girl who doesn’t speak a word.
May you continue to shine as bright as the sun,
And I promise to help you have as much fun
As a “typical child” would each day of their life
That is my promise to you each day of your life!
I thank you for all that you have given to me
And want the whole world to know and to see
A beautiful girl who does not walk, talk or move
Is a blessing to all with all that you do!
Today is a day to we celebrate you
And all the gifts you have given with the things that you do!
Happy 6th Birthday my Emily Grace
May this poem bring a smile to your face!
A friend of mine forwarded this letter to me that she had read on another person's blog. I had never seen this before, but found myself identifying with so many parts of it and crying as I read it. I would like to share it all with you.........
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your heart and soul. You are ...compassionate beyond the expectations of this world. You are my "sister".
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's clinics, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left of the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith anyways. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in al they will accomplish as they pass through the world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
I am obviously not a very good blogger since my last blog was in July and we are now in February! Well for what it is worth I am here now and here it goes......
Yesterday in the early morning my husband, Emily and I made our way through the snow and rush hour traffic to the local Children's Hospital to have Emily's tonsils and adenoids removed. To many this is a very routine surgery and the kids get to go home the same day or may stay overnight for monitoring in a regular hospital room. But for Emily this surgery resulted in a required overnight stay in the PICU due to her medical complexities. I was fine with this since I always want to make sure that Emily is safe and that she does not have an adverse reaction to anything that she may have been given during surgery. However, this particular hospital stay really hit me emotionally for many reasons.
The first is that Emily spent roughly a month in the NICU at this same hospital, so every time I walked down the hallways to the cafeteria or even just to venture out of the PICU I was overcome with the emotions of helplessness that I felt when Emily was in the NICU. Secondly, the ICU is never a pleasant play to stay as there are always situations where someone's life is barely holding on and the level of intensity can be felt the minute you walk through the doors. The final reason it was so emotional for me is there were at least three babies that very much reminded me of Emily when she was in the PICU holding on for dear life. As I watched these babies and their parents come to visit with such looks of helplessness, confusion, hurt, and joy on their faces I was immediately taken back to Emily's very challenging first three months of life in the hospital.
I wanted so badly to go over and talk to the new parents and tell them congratulations on their baby boy or girl. I wanted to let them know that even though they might not feel it now, they will someday look back on this hospital stay and be in awe that their child is such a fighter and how far they have come. I wanted so bad to tell them that their child is such an amazing gift to both them and the world and that he/she will changes the lives of the many people that they come across. I wanted to tell them that I "get it". But when you are the parent in that challenging situation the last thing that you want to hear other than "congratulations" and "all will be fine" is what I wanted to tell each one of them. So silently I said this poem to each one of the families I witnessed......
On the day your child was born they gifted the world,
A smile, a laugh, their courage could be felt.
Tiny hands and feet with a smell so sweet,
Their challenges in life will end with their defeat.
Though they may not walk, talk or feed them self,
It really won't matter for their love will always be felt.
A child whose life begins with a bang,
Will only bring joy, love and change.
Although the change may be hard at times,
You will realize the change is necessary sometimes.
Your friends may not "get it" and may even fade,
But the friendships you'll soon meet you'll never want to trade.
Life is a journey some hard and some fast,
But make sure you look forward and not at the past.
Your child is a gift that you have the pleasure to know,
And life is a journey that gives us gifts to help us grow.
So keep you head up and never look back,
For life is a journey so jump over those cracks.
Congratulations on your bundle of joy,
And know the world has been gifted by your girl or boy!
Every sunrise brings forth a new day and new life. Every sunset brings closure and hope for a new beginning.
Well, it has really been a while since I last wrote on this blog. We have been super busy and doing our best to enjoy the summer months here in Minnesota. I decided that this year, for the first time, I would pull Emily out of all of her therapies and try to allow her to be a "normal" five year old kid. Some days I think that I have accomplished this and others I have not. Emily continues to go swimming at a close by heated (indoor) pool and continues to receive Cerebral Electrical Stimulation therapy, just not the standard OT, PT or Speech. Being "normal" or "typical" is very hard when you have special needs. With Emily there are so many factors that we have to consider when planning outings: time of day, tube feedings, weather, sunlight, heat, bugs, bowel movements, supplies needed, medications, and so much more. It literally takes at least an hour to pack up all of Emily's supplies if we plan to be gone for more than four hours in a day. She has so many things we have to bring along for every possible scenario. It can be overwhelming and exhausting at that. We also have to watch what we do and how much it will be exposing Emily to the sunlight. With all of the seizure medications Emily is on she is photosensitive and has a hard time sweating to cool herself down. So of course we always have at least one personal fan or more along with at all times.
Since Emily is not able to use her arms and legs in a purposeful manner we have to watch out for bugs. So if there is at least one mosquito out then we might as well take her in cause there is no way to keep her from getting bit - even with bug spray. Not to mention that the chemicals in bug spray are way too harsh for her hypersensitive skin and the natural stuff just does not seem to do the trick. Lets face it we live in a state infested with mosquitoes so a safe place for Emily is on our screened in porch. The view is nice from the porch, but you can only sit out there so long before boredom sets in for Emily.
In the summer time Emily seems to have a flare up of crying events. This seems to be related to the heat and intensity of the sun, but we also suspect some mid-summer allergies that have not shown up on any tests yet. We always get to late June and have to increase Emily's Neurontin which she takes for unknown neurological pain and possibly anxiety.
I feel bad because it is hard to plan anything with Emily. You have to pretty much be ready to be spontaneous with plans cause if you make them in advance her world seems to crumble right when you are ready to leave. After five years I have grown to expect this, but nonetheless it is very frustrating to me. I keep so upset that our life is not what I have in my mind to be "normal". I usually get over this pretty quick, but it is still hard for people outside of our home to really get how hard it is to make plans happen with a child that is so touchy in so many ways.
My husband and I try so hard to give Emily experiences that other kids her age would get, but that can be such a challenge sometimes. We have to keep in mind too that Emily has a little sister that does not have any medical or special needs and she needs to have "typical" experiences too. We do not want Isabelle to have resentment towards her sister and feel like everything is catered around Emily. So as hard as it is for me, we sometimes have to leave Emily behind with a caregiver and do things as a family without Emily. This breaks my heart, but I do know that in a "typical" family not all kids participate in all family outings, nor do all siblings participate in the same extra curricular events.
So if you see us out and about in public with Emily, you know you have seen her on a good day and the stars were aligned just right to make it a success. If we are out without Emily you know that it was a rough start or just not something she could handle without a meltdown. Please be kind to those parents of children with special needs of all kinds because it takes a lot of planning, patience, and bravery to face the world on such a small outing as going to the store!