Sophia's Journey: I AM TIRED

Princess Sophia

My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!

When people say they are tired, they are speaking of needing a little rest or sleep. For our household rest and sleep are only a fraction of why we are tired.

I am tired of watching my daughter live an existence of hell on earth. A life where she is absent of sight and the ability to move about.

I am tired of watching my daughter moan and jerk in every manner possible while nobody can give me an answer as to how to stop it.

I am tired having to sit by my daughter's side every waking minute to ensure she is ok because of this illness.

I am tired of not knowing how to console my daughter when I know she is hurting.

I am tired of worrying if I will even be able to supply my family with a home to keep them safe.

I am tired of dreading going to my own home because I know the stress that awaits me there.

I am tired of watching my marriage slowly slip away from me as I have no time to dedicate to it.

I am tired of not finding happiness in anything any longer.

I am tired of watching my wife cry every day because of the stress and concern she struggles with.

I am tired of bullshit bureacrats who make me jump through a million hoops to get assistance when we can no longer do it on our own, but continue to try.

I am tired of waiting hours and hours for medical care that always comes up short in the care of my daughter.

I am tired of hearing about how you will are willing to help but never do.

I am tired of hearing I am so sorry to hear that your daughter is having a bad day.

I am tired of hearing that you are praying for me.

I am tired of saying I am OK when I am not.

I am tired of smiling when I am unhappy.

I am tired of crushing medicines, feeding tubes, doctor visits, sleepless nights and stressful days.

I am tired of Batten Disease!

I AM SO, SO TIRED!!!

17 comments:

UnknownJanuary 14, 2013 at 3:07 AM
for my dear husband Jacob, I love you with all my heart. I am so sorry for your pain. I am sorry for all of this.
Heidi BigelowJanuary 14, 2013 at 4:57 AM
Very honest, very true. =( Wish I could wave a wand and make Batten Disease disappear! That would make all our lives better. HUGS for you, for Jaime, and for sweet, innocent Sophia.
aclaypot4himJanuary 14, 2013 at 7:48 AM
Everytime I hear Worn by Tenth Avenue North I think of Sophie, Jaime and you. And it inspires me to pray for your strength.

http://www.youtube.com/watch?v=UUEy8nZvpdM
Linda OstingJanuary 14, 2013 at 9:02 AM
I am so glad you can at vent your feelings and I wish there were more options for you, your wife and Sophia. I do not know why God chose you for her parents, but I do believe he did what was best for Sophia when he chose you and your wife. Just for a moment try to picture Sophia without the two of you. Where would she be, what would she be going thru over and above the terrible disease she battles everyday. She is so very lucky to have both of you as parents, you love her, protect her and would give your own life for her if it would change things for her. I am merely part of the facebook extended family, but would be willing to do anything for Sophia and for you as her parents. You don't know me, but that of course could change. I live 45 minutes from Lexington and would be willing to help in anyway I could. I have been blessed with 3 children of my own and so far, all are healthy as you well know, that could change at any given time during their lives. Maybe we could form a support chain for you, your wife and Sophia to help, even if its just for an hour or two...anything to help relieve your stress and give you and your wife a little down time. Please, feel free to contact me anytime and I will help you in anyway possible. I follow your fb posts and so greatly appreciate your families willingness to share her ups and her downs with us. We all have a purpose in life and you have been given the ability to love, nurture and care for a baby named Sophia. If I can help, I am a message away. PEACE :)
AnonymousJanuary 14, 2013 at 9:26 AM
I too live relatively close and would love to help form a support chain for your family. I also have a 10 pound weighted blanket that I would be honored to donate to Sophia at any time. I wish we could do more but none of us are in your shoes or know how you feel. keep strong if possible.
child of GodJanuary 14, 2013 at 5:02 PM
There is no doubt the road you are on is rough and nobody ever wants to be there. I am new here, I saw the link on Sophia's Facebook page.

There is no greater pain then the pain of watching your child suffer. The only One who can help you deal with this is the One who watched His Child suffer too. There is peace that can only be found in Him. There is relief that can only be found in Him. God knows your pain for He freely gave us His Son to die on the cross. He freely turned His back on His Son when Jesus cried out, "Father, Father, why have you abandoned Me?" God knows your pain, the deep pain of a suffering parent. He has solace for you and He will minister to your soul, just cry out to Him and seek His face. Search Him out in Scripture, He will answer you.

Thanks for sharing your heart.

Here are a few Bible verses that really helped me when I went through suffering.

Matthew 11:28-30 ESV

Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.”

Isaiah 40:31 ESV

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

Psalm 37:7 ESV

Be still before the Lord and wait patiently for him; fret not yourself over the one who prospers in his way, over the man who carries out evil devices!

Jeremiah 29:11

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.

Lifting you all up in prayer.
<><
rameelinJanuary 14, 2013 at 7:36 PM
I loved this. And I loved seeing Jaime's comment in response. I often tell Daniel that I am so sorry and yet I know that he feels the same. There is no apologizing in an adequate way when you are sharing in such similar pain and yet such different emotions. It's all so hard and conflicting. You guys aren't alone; although I know it feels that way. We are far, but close in heart. We're always praying for you and thinking of you! Jacob, please feel free to add my husband Daniel on facebook and write him anytime. I'm sure he'd love to talk with another dad who maybe understands some of what he's feeling. His name is Dan Larson. <3
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Princess Sophia

I AM TIRED

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