Saturday, December 15, 2012

In the Heat of the Battle

I know I haven't written in  a long time. I guess I was waiting until I felt some positive energy about Isabella's situation and the way our lives are going. I never like to write when I feel so down hearted. I hate to pull others down with me. But sometimes I just can't help the way I feel and the battles I go through. I have felt so guilty these past couple days because of the school massacre that took place Friday. I have been so mad at my own self for feeling even a little upset about my situation compared to what they are going through. I know they would rather have their child with them tonight even if they were in Isabella's shape. And I would to, believe me! My little girl is the light of my life and yes, this horrible shooting definitely makes me appreciate her here with me no matter her condition. She is the reason I wake up everyday and continue with life. And even though these tragic circumstances have taken place, for some reason it still pains me to see my daughter struggle daily. I feel so much love toward her. Its unlike anything I have ever felt for anyone. And when you love someone that much, in such a deep way, it almost kills you to see them in such a way. Sometimes I just don't know what to do with myself. I know its been two years since Isabella was born and diagnosed, but I guess I still find it hard to accept this as her life. I have grew up my whole life believing that affliction shouldn't touch my home...That I have the power in Jesus' name to rebuke it from our midst. The 91st Psalm keeps playing in my head and I just can't understand why this has happened to my daughter. I've always felt deeply that this is a huge test that God is allowing me to go through to come out stronger than before, but when I look at my child and the reality of two years have gone by in affliction, it just seems so unfair. Not just to me, but to her especially. Two years that could have been filled with so many exciting things and so many discoveries of the world. Her vision loss hinders her in so many ways. I want so bad for my baby to look at me and know I'm her mama. I dream of the day we can watch cartoons together, sing together, or just feel her hug me or get a kiss from her. Maybe I allow myself to be tormented by these things, but what can I say..I'm her mother and I want her to be able to live life to the fullest. Is that so wrong of me? I try to look at her and see God's love, but I constantly see her affliction that God won't remove. And looking at it that way has caused me to have much anger. Anger that I shouldn't have. Anger towards God. And that's a scary place to be. I have always felt so protected and safe in the arms of God. But the day Isabella was born, I felt so forsaken by Him. I have never been more hurt in my life. He's my Father and I look to Him for everything I need. And today I need Him more than ever. But I just feel so alone. I have a huge family, but yet I feel so utterly alone. For a while, I thought God allowed this to happen to Isabella to help change a lot of people in our family. To make them better people. More appreciative of life and God. I saw a difference in a lot of them after Isabella was born, but that swiftly faded. There are a few that have definitely been affected and I see a great change in them for the better. And when I see them, it makes me hopeful that Isabella's situation was for a reason beyond my understanding. But I am so heart broken at all the others that are no different than before Isabella was born. Yes, they feel pity for me and Isabella. But what does that help? Situations like this are suppose to make you more grateful, right? But instead, I see the same people, still rushing through life, wanting to rush everything by. "I can't wait for my child to walk", "I can't wait for my child to talk"...Yeah, I would have probably said the same thing before Isabella was born, but today I look at the little things in life, and they mean so very much. When I'm around others and all they are talking about is their child walking and talking and playing, I feel so out of the loop. I constantly feel like such an outcast. It seems like the only place I fit in is with others that are going through the same thing. And I am so grateful for all my PKS family out there! Ya'll mean so much to me! Before Isabella was born, anytime I felt down or brokenhearted, at the end of the day I would realize that no matter how big my problem was, I always had God. And I automatically felt better. Today, I just don't feel like I even have that. I feel like the whole world is caving in on me, and I don't even have the support of the only one that Father. There are so many people out there that I need to be praying for, and that weighs heavy on me. But I struggle with the feeling that God doesn't hear me, so how can I pray for others if I can't even pray for myself? I guess that's when others kick in, cause Lord knows I need it. I'm thankful for the prayer warriors out there. The ones that put their own selves aside and pray for those in need. I felt like I use to be one of those, but my trial has robbed me of the job I'm suppose to be doing. So I really feel like a failure. Prayers needed tonight, even though I'm so unworthy of them.
needing to believe these words more than ever...

Monday, August 20, 2012

Anything Is Possible

Well hey everyone!..I know its been a good while since I've sorry bout that! Life gets so busy at times and I feel so wore out! But I should always find some time to let yall know how Isabella is doing so I'm taking that time now:)
Our bundle of joy is smiling and giggling alot more now and that fills my heart with so much joy! Its those little things in life that fulfill you for sure. I remember when she was an infant and we seldom got a smile and wondered if we would ever hear her laugh. The doctors said her vocals were not strong so that left us in question. But I also remember the first ever real giggle we got! Me, Shaun, and Isabella was in our room about to go to bed and I was going to give her a little tickle just to see what she would do. She holds it in alot because it takes so much effort to really laugh, but she was able to break through with a giggle, a REAL GIGGLE, just for her mommy and daddy! And I was so happy Shaun was there to witness it as well. He doesn't really voice  his deep feelings and the pain he has felt since Isabella has been born. He focuses rather on the positive, excepts life how it is, and makes the best of everything. I commend him for that and wish I could be more like him at times. I have definitely been bitter and constantly wonder why God allowed this to happen to my baby. It has tested my faith far beyond measure. And if this is a test, I'm not sure yet if I've passed. So at times like this, I really wish I could be more like Shaun!:)..But on the other hand, there are moments when I'm glad I haven't excepted this on my child. Like when I read the Bible and I'm reminded that Jesus took 39 stripes at that whipping post for our healing. All sickness, All disease, Everything! He is the Healer! And I know He doesn't want Isabella to struggle through life. We as children of God have a right to ask for healing from our Father. Yes, this may be a test that it feels as though I'm failing, and yes, I definitely feel unworthy to ask anything of Him, But, I have to. I have to for my daughter. She can't ask for herself so I'm her voice. But I also know God is ok with me asking for Me..because I'm His child just like she is. I'm a child asking for healing of her child. I know that has to touch Him in some way. He IS Love, how can He not be moved with compassion when His own child is asking Him out of love to heal her baby?  I believe God allowed this to happen but I also believe He never intended for her to remain in this condition. the 58th chapter of Isaiah teaches us to call a solemn fast, to offer unto God a holy life, to give Him the first of our day and ourselves. And then it says we can call upon Him, and He will answer, and our health shall spring forth speedily! And it goes on to say that the blessings of God will be upon us in such a way that we cannot imagine.. Does not that include the healing of our bodies??..The healing of our children??..That they may stand as a testimony to the world that God is God, and He hears and answers the prayers of His children?!! Maybe God wants me to have this attitude because thats what it will take to change the situation. I admit I have used this kind of thinking in the worst way, being angry with God..its not a good postition to be in, and its an awful feeling to think that God doesn't love you. But if I could only direct my thinking toward seeking God the way He wants me to seek Him, I know things would change in mine and Isabella's life. Its so hard though..its hard to be positive when you're constantly reminded of the pain..I guess I should replace those times with prayer and reading, and in doing so, replace the weakness with strength. Please remember me in your prayers that I have the strength and perserverance to seek out my daughter's healing because she deserves it. I'll take her like she is ten times over, but if she could talk I know she would say "Mama, could you ask God to heal me?"..And I can't go through life and not ask HIm to do so..If He doesn't, then so be it, He's God, but it won't be because I didn't ask. So remember us when you pray please..We are looking for better days ahead, but for now, we have our baby and we are enjoying every laugh and every giggle ten times more than a normal child and that makes it even more exciting. If there is one thing I've learned through this trial,it is to appreciate the small things, because when you don't have them, they are suddenly really big things:)


Wednesday, June 13, 2012

The Love of a Mother

Well, we are back!..I know its been a while since we have written on Isabella's blog. Its so easy to let life get in the way. Sometimes I feel like we have zero time or maybe just zero Isabella made a trip to a specialist Friday to get fitted for braces she will be wearing on her feet. She doesn't have to wear them all the time, just during the day when she is jumping or practicing her standing. I picked her out a very pretty design. Its blue with pink butterflies. She loves blue! Not to mention, it will match her eyes!:)..She didn't really care to be held down and let sticky stuff dry on her till it got hard, but she was a champ through it all!..I'm sure it will be worth it.

On another not so good, Isabella has made two unwanted trips to the hospital and doctor's office in the past two weeks. Her fever shot up and she had to get blood work and a urine test and a chest x-ray. She had a UTI but its gone now. She also had a spot on her lungs but the x-ray is showing that it is clearing up..Yay!.. She's cutting more teeth, so she may not be a happy camper for a while.(...Can't wait till all those teeth or in for good!

Motherhood is definitely a wonderful thing, something I wouldn't trade for anything, but its also a very scary thing if you think about it. Loving someone so very much and knowing that they are your reason for living is alot to feel. Its amazing but it scares me to death too!..This love is so powerful, its unlike anything else. I have found that as a parent, you live through your children. If they are happy, your happy. If they are sad, your sad. When they hurt, you hurt. With all Isabella is going through, I feel I am going through it as well. Right there with her. Even though sometimes I feel she is way tougher than me..:)..When I look at my daughter and see her held back in so many ways, trapped to an extent, I feel trapped too. I see her in need of healing, and I see I need that healing too. When I'm around other mothers who have babies and they are talking about what their babies are doing and saying and accomplishing, I feel totally left out of the conversation. I feel like an outcast, and I feel my child has been pushed out too. I know the other mothers are innocent in their words, but I feel only parents going through the same thing would really understand. It goes over everyone else's head so fast, but when you are faced with these trials, you sart to notice things you didn't before. When you hear people say "I can't wait till my child starts walking!" hits me like hot water in my face..I want to say "Hey, my child is almost two and she can't sit up!".."Be patient and be thankful!"..But I have to remind myself they don't mean any harm. I probably would say the same thing if I wasn't traveling this road I am on. I guess I just feel like others should be more considerate, but at the same time, I don't want to make others feel like they can't say what they want. I just can't stand being constantly reminded of what my child can't do. People just can't imagine what that feels like. I want to be reminded of good things. I want to be reminded that I have her here with me, and thats all that matters right now..No matter what she can or can't do, she will always be my little girl, the love of my life! I am just so full of emotion and I'm not sure what to do with it sometimes. I started this blog to let everyone know how Isabella is doing but also to get it all out there and maybe I could help someone else in the process. And maybe that will help heal me too

Mommy loves you Isabella

Saturday, April 21, 2012

Spring Break!

Well, we just got back from Dauphin Island..we had a great time! some great family photos on the beach!..I'm so happy with them!.

.We took some last year on Isabella's first Spring Break and I was comparing the pics, and she has grown so much!
my baby is blooming into a big girl!..I could cry!..Time sure flies, especially when you're so happy and in love with your child. She loved the feeling of the wind on her face, and she makes the funniest face when she feels it!check it out below!
she is so tall!..I can't believe how much my little girl is growing!
You know, someone asked me the other day what I was was going to do when Isabella got too heavy for me to carry up the stairs. Honestly, my mind has always been set on the fact that Isabella was going to walk before I was faced with that. So, it has never been a worry to me. But, when I was faced with that question, I had to think about it, and I have come to the conclusion that God has got it all in His hands. For now, I love holding my baby in my arms and will continue to do so for as long as I can. After that, only God knows. But, I'm not going to end the matter with those words. I would rather say that my God is a healer and NOTHING is impossible with Him!..I dont wake up everyday worrying how Isabella's life is going to turn out because she has been in God's hands since before she was born. And I'm just going to leave her there. That's right where she needs to be. And I'm at peace with that.
My little girl is a trooper and inspires me everyday to be a better person..more loving, more devoted, more like Christ. I am honored to have been able to witness the purity and innocence and love that Isabella shows me everyday. I aim to be more like her. Thank you God for such an incredible blessing! I know you have a great plan for Isabella, and I am confident in that plan.
This is one cool baby right there!!!..Go Bella!..Go Bella!!

Friday, March 9, 2012

So Much To Look Forward To!

Well, tomorrow is the big day!..Isabella inspired her cousin, Hunter, to start a non-profit organization for children with disabilities and their familes. She is the face of this operation and tomorrow they are having their very first fundraiser!..We will be at a local boutique here in Mobile, called Ruby Blue. We will have t-shirts, cotton candy, and snow cones!..And Isabella will be there to show her support as well! So many people want to meet our precious little girl!..Now we just need to pick her out something cute to wear tomorrow!..LOL.))..That is important..especially to us girls.:)..

Isabella has been really irritable lately..she has allergies AND she's cutting four teeth at once!!..OUCH! poor little darlin'. I just gave her some tylenol so hopefully we won't have a bad night. I can't do anything about all this pollin though, come on Summer!!!..)).

Thursday, Isabella had therapy again. She was doing pretty well until she fell asleep in the therapist's arms. There was no waking her up after that!..She got to practice standing, in a really neat contraption I must say. I wouldn't mind having one of those at home.

Isabella sat in her highchair at dinner last night and ate some spagetti that I chopped up into little bitty pieces so my baby could eat it..She really enjoyed it. Not to mention, she also drank out of her very first sippy cup! Yay Bella!!..It has little handles on it so she can learn to hold it herslf one day soon.:)..

We visited a neighboring church last night right up the street. We really enjoyed the sermon and the singing. We also really enjoyed the prayer and encouragement afterwards. It was nice to talk to others that still believe God is a miracle working God!..We will not give up on Isabella!..We will pray for her everyday for God to continue to touch her with His healing hand!..Nothing is impossible with God!

Saturday, February 25, 2012

In love with Isabella.)

There is absolutely no way to express the love between a mother and child. I'm sure alot of you know what I mean. Sometimes I am truly overwelmed by how much I love my child. It's even scary at times. She is my whole world.
I saw a video tonight from the day of my baby shower..Setember 2010. It's so crazy how the very time of this video I had no worries. I was in that blissful state of pregnancy where you are just on cloud nine waiting for the arrival of the precious baby you have been carrying for so long. I remember that feeling. Sometimes I miss the moment in time when I was pregnant,  before I knew there was something wrong with Isabella. When everything was still perfect with no worries. But then again, I didnt have her to kiss and snuggle with. So here we are now, yes I worry every day because I see my baby struggle, but I would rather worry and have her, than no worries and not have her. So we are just going to press onward and work hard...we are in this together..always.

Isabella had a busy day today. She went to her cousin's first birthday and then a baby shower for her other bigger cousin..LOL. She was plum wore out. Now she is asleep snuggled up to her daddy. I'm very excited to announce that Isabella has truly been a happy, playful baby ever since she has worked out her day and night schedule. She's always been happy but she slept alot during the day..well, most of the day actually. So we never really got to see alot of energy out of her. Now its just wonderful!..She stays awake most of the day taking a nap here and there. And she has been sleeping all night!..Its truly an answered prayer.))..Well, tomorrow is Sunday and hopefully if the weather is pretty, we can go outside. If not, we are playing inside for sure!..I'm trying to make excercise fun..I hpe it works!...Loving my baby girl oh so much!!!!!!!!

Thursday, February 23, 2012

Still Going Strong..:)

Hi there!..its been a week or so since we have posted..Isabella has been getting over RSV..I can't wait till all the little coughing and the runny nose is gone completely. Well, Isabella recieved an awesome package in the mail last week from WaterWay Babies!..Her new float!..It's designed especially for children who need a little extra support. We are so thankful to Lucia from Colorado who also has PKS, she is the reason we found out about this specail float!..Thank u!!

Isabella has another package on the way pretty soon and I'm really excited about it!..A beautiful blue ruffle dress to match her eyes!..She is going to wear it to her cousin Shaina's wedding in April. It would also make a wonderful outfit for a photoshoot, so be looking out for that!.))...

Isabella had therapy today, she got really upset like always..but she is improving with sitting up by herself and that makes me one proud mama. My daughter truly inspires me.

We also went to the eye doctor today. Some how I knew before hand that I wasn't going to get great news. It's like I had this feeling to prepare myself. And I'm very glad I did because the doctor just plainly told me she could not see very well at all. She is drawn to light, but everything else is probably not very clear. More than likely, these problems all stem from the brain. They want to put her to sleep so they can look deeper into her eyes, and then maybe she will get a diagnosis. It was very overwhelming to constantly hear what's "wrong" with your child instead of what's "right". It's a constant battle of positive and negative energy in my mind.

But , all that matters at the end of the day is Isabella laying here beside me. I have her with me today and that feels my heart with joy. I know God is a Healer and when He chooses to do more with Isabella, He will. I havent heard the word "mama" and I haven't got a hug yet, but that doesn't mean I'm not a mama. I'm still holding on to a hope everyday and I can't let go of it. And why should I? What's life without hope and faith? They are what gives mankind a reason to look up and keep going, better days are ahead.
I am so very thankful for every prayer that has been prayed for Isabella. I know she is thankful as well, and one day she will tell everyone just how thankful she is! For now, I'm going to do all the snuggling and get all the sugars I can get, cause they grow up way too fast!..Night Night...Love Ya'll