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!

Oh, where do I even begin? Being a parent is definitely the hardest "job" I have even done. I always wanted to have children and thought that it couldn't be any harder than babysitting - right? Boy was I ever wrong. No matter what your child's challenges are it is difficult. I have people say to me all of the time "how do you do it, how do you survive the constant roller coaster ride, the lack of sleep, the unknown?". I say to them, "you just do it". I could give up as a parent and turn my child over to foster care or make her a ward of the state or even institutionalize her, but what good would that do? I am still her mother and would long for her, to hold her, to try to make things better for her, to love her unconditionally.

In our house each day is a new challenge. Our daughter, Emily struggles with intractable multi-focal complex partial seizures (wow that is a mouth full). What that means in laymen terms is that her seizures are not controlled by medication. And what that means to Emily is that she has to take five different seizure medications plus the Vagus Nerve Stimulator (VNS) that she has implanted in her chest and neck for seizure control.

In addition to the seizures Emily struggles with cerebral palsy (hypotonia), global developmental delays, cortical visual impairment, gastronomy tube (g-tube) and major sleeping issues. The cause for all of Emily's struggles is still unknown. She has gone through literally hundreds of tests to try to find a reason for her seizures and everything else. Nothing has been determined on a metabolic, genetic, or any other level to point to the reason for all this chaos in her brain and body.

Just like parenting our second child, Isabelle, Emily has her ups and downs. Some days I even feel Isabelle is harder to parent than her sister. Since Emily's diagnosis is consider idiopathic (no known cause) it makes it even harder for us to figure out how to treat things. We have no way to predict what she will be able to do or not do in the future. So we have to hold on to our hopes and dreams of what we want her to do. We have to stay positive and remember that life is like a roller coaster and is full of ups and downs no matter if you have medical struggles or not.

If you are a parent of a child with special needs then you know what I am talking about here in this blog. You also need to know that you are not alone in this battle and there is at least one other person who gets your pain. I have never said to myself "why me, why Emily". I have though be sad and even angry at the situation and sometimes even at her. This anger is normal and acknowledging it is part of the process of dealing with a child who's life is not what you had hoped it to be. Anger is not okay when it is directed at the child. I know that I said that I sometimes am mad at Emily, but it is more because I can't understand what she is going through and that upsets me.

Having a child like Emily has been a great blessing too. Without Emily I would probably still be on the same path in life I was before and not liking the career path I had chosen. Emily has opened my eyes up to the world of possibility and I have learned from her so many things. I don't have to remind myself how lucky I am to be Emily's mom. I know that she is here for a purpose and I am honored to be a part of that journey. When I think of Emily I here a song in my head. The song is called "In My Daughter's Eyes" by Martina McBride:

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes

So when life is hard and you are feeling beat down by all of your challenges as a parent, remember it will get better. You have been chosen to be the parent of the special child and you are not alone on your journey.