Tuesday, January 3, 2012

Sisters no matter What

Sometimes when we are so focused on things that aren't going the way we planned we loose sight of the amazing things that are taking place right in front of our eyes. It's hard being a mother, it's harder being a mother to a child with special needs. Being afraid I will never see my daughters face light up when I come into a room, never see her clap, see her first steps or cry out the word "momma". But nothing pains my heart more then worrying that I will never witness the sisterhood that my daughters should be able to share.
I remember when I found out I was pregnant for the second time. Among many thoughts flying through my mind the main was how exciting it will be to have two babies so close in age I never had siblings (biological anyway) and I felt whole thinking of them growing and playing more then anything always having each other to depend on. How easy is this time going to be I remember thinking. This little one will learn to talk faster and walk faster because it'll have a big sister to learn from. All of those things quickly faded as time went on and things went wrong. All of the things that so many people take for granted we will never experience. I will never hear the sound of little girls giggles coming from the other room, never hear the pitter patter of two sets of feet running through the house, I will never get to heal Riya's  broken heart because Ruby can do something she can't, I won't have to break up fights, worry about them being sneaky or not telling the full truth just to make sure their sister stays out of trouble. I will never be able to watch my daughters create memories that they will laugh about and share forever.
So many little things happen in life and we don't even notice nor do we realize how lucky we are to be blessed in such moments. We are always to worried about what's going to happen next or what we can do to make our lives better, always wanting more instead of taking a step back to breath in what we have and thank God. Thank him for all he has given us. Because we may not be exactly where we planned or where'd we'd like to be but we're here and in time things will come, or they may be happing right in front of you and if your to busy not being thankful they will pass you by. I guess what I am getting at is sometimes I can't help but to be consumed by all of the things that I will never get because of Riya's disability. Some days I barely move from the couch because I just sit there and think of how things would be if Riya was "normal".  I fail to remember that most of these are selfish things. That Ruby only knows Riya for who she is and loves her probably even more so, we are still able to make memories. How lucky we are to have learned quickly to cherish every moment  to not take any thing for granted including her disability. What blessed little girls, their hearts will always be filled with compassion, empathy and love because of their situation and that is far more valuable then some siblings teach in a lifetime. 

Monday, December 12, 2011

A little Explanation.…

I have always prided my self on being strong, A positive free spirited woman that will help anyone in a time of need.  "Help"... I refuse to know that word on the receiving end. So if thats the case how can I possibly be as strong as I thought I was? "Strong" how can one be "strong"? Most would say standing firm never backing down always up to par no matter the situation... Also, wouldn't strong mean being true to who you are, letting people see you at times of sadness because it's the outcome of how you handle the situation not how much you avoid the emotion. Strength to share your burdens and sorrow with others in hope you may help touch their lives. Strong means admitting you may need help because you know your limits. Falling to your knees and telling God " I can't do this alone". This is the point I am at. I have endured more then most in life dealing with it the way I thought to be strong. Yea strong all right, strong on my mind and heart to the point I'm eventually going to break. I'm ready to smarten up because this by far is the hardest place possible. Most of you know my daughter Riya has had problems since before birth. If you didn't know you may have tried to ask and noticed me get irritated or upset (because I'm "strong and don't show emotion lol) for that I am sorry. I noticed some people creating blogs and thought what a great outlet when I'm feeling stress or worry as much as I pray and stay positive, I'm human and have these feeling especially in times like these.


To sum up (because there is so much) Riya's situation. At 4 months old she received an MRI which showed us she has Myelin sheath damage. When I was told this I instantly got on the computer to see what we could be expecting as any mother would. The main category of diseases that is attached to Myelin sheath delay/damage was a group called Leukodystrophy. Some of you may know what these are some of you may not. Lets just say the outcome of most are not good. So months past and we waited. Waiting with no answers just what ifs', "What is going to happen to my baby girl?!"  the only thing running through my mind. She received test after test after test was admitted to physical and occupational therapy and was finally given the diagnosis Cerebral palsy. I thought we were out of the dark. I knew it was going to be a difficult road but I was ready to take it on. I felt and saw her improving everyday and even with a heavy heart I still felt that everything was eventually going to be ok. On November 25, Riya received another MRI. Positives: some parts of the brain the Myelin was developing in. Negatives: There are some areas of her brain as the Doctors say, "Show us there is something going on" possibly Leukodystrophy the word felt like a knife coming out of his mouth and straight through my chest. 


So at this point we stand back at square one. Back to the waiting game, back to no answers and doctor appointment after doctor appointment filled with maybes but lots and lots of hope! Though in the medical world things may not look so good, I can't help but feel/know every time I look in her bright blue eyes and see that big smile that God is with her. I ask if you're reading this to keep my little girl in your prayers. 


http://en.wikipedia.org/wiki/Leukodystrophy