Unwavering Faith

Throughout the past 20 months we have been challenged and tested and to be honest it began long before that. Lee and I have had many situations arise during our marriage that many couples would not make it through.....job loss, financial challenges, sickness, extended family troubles, lies, slander, the list could go on......

We have been married for almost 9 years and I can say it hasn't been easy but it has been worth it. There is no one I would rather have spent the past 9 years with and no one I can imagine raising Maelee with. When no one else understands or sees what I see....Lee gets it. He may not say much, he may just nod his head, but I know that he supports me 100% and has always supported me.

During the past 20 months our lives have been turned around in a million directions. I can say that this is the hardest situation I have ever been dealt, we have been dealt. As a family (Lee, myself, and Maelee) we are stronger today than we ever have been. Many people have asked me if I ever loose faith. This is a very loaded question but the answer is simple; no.

I know that having faith is something many say they have. But I can honestly say that my faith is stronger now than ever. I may not go to church every weekend, I may not talk about God all the time, and I may not shove my faith in your face. But my walk in faith is strong and personal. I will never forget learning we were pregnant and being told we may never meet our child. Many do not know that about us, many had no idea, but my faith carried me through. No I don't believe because I have faith that I carried my pregnancy that long, I know that my faith is what got me through 33 weeks of worry and knowing that I could not change the fate of things but had something to lean on.

You see faith is a personal thing, it's a crazy thing, it is the thing we turn to when no one else understands and when no one else gets it.  I don't think God made my child with special needs because I was strong enough to handle it. I believe that I am a strong person and have relied very much on my faith to carry me through. God doesn't give special needs children to the strong people only......it happens and you have a choice to pick up and carry on or let the situation take over.

Faith can mean many things to different people and that is the amazing thing about it. But each of those people will tell you they believe that something is helping them get through, whether it be God, Allah, nature, or another being.  I will not sit here and write all my beliefs out because I know that we live in a diverse world and that is a wonderful thing.

My faith has been tested many times but it has never wavered. Over the 9 years I have watched my child fight for her life, have her heart start failing, diagnosis after diagnosis, loss of jobs, sister who fought cancer, career changes, financial instability, family drama (oh the drama), parental divorce, death of loved ones, the list could go on. My faith has never wavered. If you ask me if I feel cheated, tested, or upset with God ever....the answer is yes. I would be lying if I said I never sat here and questioned why things are happening. If anyone ever says "Oh no I was completely fine with my child's early birth and being on a ventilator because I have faith"....they are lying. I questioned God, I questioned why this would happen. But I knew that it would be "ok"....but the definition of ok may not be my plan but my faith will carry me through.

Maelee is a very special little girl and I am thankful we have her in our lives. I am thankful she is happy, loving, kind, and has a wonderful sense of humor. I am not thankful she has CP, PLMD, RLS, allergies, spends her days in therapy, and possible asthma. I may not be thankful for those things but I have accepted them and turn to my faith to help me understand the challenges she has been given. Our hope is to raise her in a way that she doesn't feel wrong for questioning but at the end of the day understands God will see her through.

So yes I am mad about things, angered sometimes, and frustrated. But those are the days that will pass and we will continue this journey. God will be there to listen when no one else is and guide me to continue to push on when I just want to give in. Maelee is my motivation, inspiration, and the reason we push forward every day! She is a big part of my faith. And I am blessed to have her just the way she is.

Updates from the past few weeks! :)

Wow! What an interesting couple of weeks we have had. I got sick....not just a cold but super sick! And in between it all we had appointments for Maelee that could not be missed.  I believe we will never walk into a doctor office and have an answer right away. We get the I think this is what it is, I want to run more tests, and the dreaded wait and see.

This past Monday Maelee had a neurology follow up and there were a few concerns to address. Overall the appointment went well and he was happy to see her cute little braces and watched her walk both with them on and off......he was very happy she had them. We discussed her therapy routine, he read updates and the plans and was happy with it all. But then the dreaded question of anything new happening? 

Over the past few months we have noticed staring episodes happening with Maelee, her teachers have alerted to to a few that have happened at school. This isn't staring like she is ignoring us, she is not "there" when it happens. You can shake her, touch her, poke her, pinch her, stand directly in front of her and NOTHING. It's like she is in another world. I have recorded a few of these episodes but they happen more frequently some days and other days I barely notice it happening, and am thankful for the days it doesn't happen at all.  I showed her doctor the videos, we talked, and then the plan came......another ambulatory EEG! He believes these could be seizures but is unsure of what type since she does weird twitching throughout the day randomly as well. We have always told him of the twitches and staring spells but every other EEG has come back normal so I just knew she wasn't having seizures.....but now I am worried. 

During this visit he said her diagnosis out loud. "Maelee having Cerebral Palsy puts her at increased risk for seizures." Hearing the diagnosis again cut like the first time. For some reason I had hoped and prayed that one day he would say he diagnosed her wrong, that she was fine, that her left side will just magically do what it is suppose to.............but that did not happen and will not happen. Maelee has CP.....and hearing it again from her neurologist broke my heart all over again. Unless your child has a disorder or any type of special need you will never understand how fast your dreams change, how fast one sentence or a few words can change your life, you will never understand the heartache us parents feel for the situation. 

Understand that CP doesn't change Maelee since we know her no different. She is exactly who she is with CP and all. We don't know what it would be like for her to use her left side at 100%, what it would be like for her to stand with a narrow base, what it would be like to go a day without her falling over he own feet, just one day where she picks her left foot up completely off the ground, and one day where we don't tell her to put her feet flat (heels down is a common conversation recently). Maelee has CP and a mess load of other things happening because of it along with some sleep disorders but that is Maelee. I just prayed that the label would disappear and she would just be told she is clumsy and right handed........but that is never going to be the case. 

So we will move forward and she will have another EEG. From there we may not have a plan and the dreaded wait and see will happen. In 6 months she may have another EEG to follow up. You see EEGs don't always show the whole picture, it's a hope you catch a seizure on it, but what if it's Maelee's good day and no episodes happen......we are back to worry and not knowing. This seems to be the routine of our life. 

I don't worry over the little things anymore about Maelee or life (life is for a whole other post). I know she will do great things in life and be amazing. But when my heart says something is not right and worry sets in it is very hard to ignore. I have left Maelee's life in God's hands along time ago. People like to say the stupid....yes STUPID comment "leave the worry to God and know he will handle it." ummmm yea I am her mother and worrying is my job! God will handle it but I will worry, I will stress, and I will bite your head off it you tell me to stop worrying. :)

So for now Maelee will continue PT, OT, ST, play therapy at school, starting Hippotherapy hopefully soon, and another EEG. She will be going to her pediatrician for a asthma consult soon....something we were warned about but the time has come where it is showing it's ugly head and so proactive we will be.  

And Maelee will continue to be the silly, crazy, fun, lovable, kind hearted, amazing little girl who we love more than life itself!!!! :)

Hippo what!?

We are embarking on a new journey with Maelee.....Hippotherapy! No she is not going to spend time with a Hippo or learn about them....but she will be spending time with therapists and horses!

Hippotherapy is something I have been researching for a while now and after a discussion with Maelee's therapist we find this will only benefit her. I have heard some amazing stories in regards to this alternative practice and am beyond thrilled to get Maelee started.

Here is a website that explains everything about it!
http://cerebralpalsy.org/about-cerebral-palsy/therapies/hippotherapy/


Our goal is to help Maelee with her trunk control/strength, balance, coordination, sensory integration, muscle tone, improved gross motor skills, and the list can go on! There are so many positives to this choice of therapy that I can't even list them all.

We will be continuing with the traditional PT/OT/ST and CBRS at school as well as adding this....yes her schedule just keeps getting busier! I know that some people think we are crazy to add another thing to Maelee's schedule but this is the time to do it, so busy we will be.

Will update more when we have a date and time scheduled for our first visit! :)

Taking a Step Back.

Over the past few days I have taken a step back, a step back from the phone calls, the insurance questions, the searching for the right caregivers, taken a step back from all that is involved with a special needs child.

I took a step back and just enjoyed my daughter. Yes we still had a million appointments this week, yes the grass drove her over the edge while being outside, and yes I am sometimes so tired emotionally that laying around would be a better option. But this week I have enjoyed my child, allowed her to play in ways she never would before, and laughed at all the silly things she does!

Maelee is growing up so fast, she is no longer a baby :( but a sweet toddler who is changing into a little girl everyday. She loves her babies, loves to sing and dance, and last night we painted her nails. She loved it until she realized that drying them was either going to take the blowdryer (her sensory does not love the blowdryer at all) or patience....and we all know that toddlers have no patience! So some were smudge, some barely had any polish, but as she ran around to show us her pink nails I knew in that moment the imperfections didn't matter. She was happy with the way they turned out.

It was in that moment I realized that Maelee is a fighter, she is a happy girl, and no matter what problems may arise or what differences she has, she is happy with herself! Imperfections and all! I pray that she continues this path as she gets older, we all know how cruel the world can be and if she can just be happy with herself she will live this world wonderfully!

Maelee may drag her foot or catch her left toes, she gets upset by grass and other things outdoors (not because she is a girl but because it sends her into a meltdown), she may have episodes that appear to be like absence seizures, she may never use her left hand the same as her right, and some days she is so tired her body hurts. She will always have CP. She will always have PLMD and RLS but her jerking in the night can be controlled to some extent....those nights that it's not she will be tired following and that is ok. Maelee is Maelee, she is a ball of perfection made of imperfect situations.

I look at her and see determination everyday. She is happy 99% of the time, she loves to laugh and enjoy the day! Looking at her play this week I truly have realized that it will be ok. Many have said this statement to me before....but with the intention that nothing was wrong, that she would "outgrow" her situations, or that she would be "cured". Those are not true but what is correct is that It will be ok because my precious daughter is a living miracle and she is ready to take the world on! Struggles and all! God gave her a gift to shine through each situation and that is exactly what she is doing!

Reading the Bible to her babies! Melts my heart every time!

Nothing says girly like a Minnie Mouse Bug!

Her smile can change your day in an instant! :)

Maelee's First Year in Pictures :)

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