I am sitting here typing on my laptop at the foot of Jagger bed, he is finally sleeping, well drugged out to be exact and Annett is taking a well deserve rest on a very uncomfortable rocking chair in our ICU room.
And I wonder how can life be so unfair, my little crevette (shrimp in French), my little boo, is 16 months old, we should be at home having fun, kicking a soccer ball in the yard ( he is half French and German so you know soccer was going to be his sport), he should say Mama and Dada, walk around our house like a tornado and try to climb on every table and chairs but instead he is laying on a ICU bed struggling and hurting with every breaths he takes.
Now the tears are pouring down my face as I realized that I will never take him to his first day of school, his first soccer game, his first Colts game, his prom and high school graduation, to a few road trips to look at colleges, I will never meet the first girl he takes home, I will never attend his wedding and babysit his kids, my grand kids.
This disease is taking his life and there is nothing we can do about it, how is that fair!
Sorry I had to rant, but as you read this, if you have kids, please take a moment to tell them you love them and that you are so lucky to have them in your life.
But I am lucky too, because on September 14th, 2010, I saw the most amazing, sweetest face I ever see, and for the last 16 months, this little boo taught me so much about life, about fighting, about courage and about joy.
It did not matter how much he was hurting or how bad of a day he had, when I walked into a room and he saw me he always had the biggest smile on his face and for that reason alone I am a lucky man!
Sebo, my heart is breaking reading your blog. I don't think there is anything I can say to make you or Annett feel better. I tried to reconcile this in my mind but it's not working because I can't make sense of what you and your family are going through. Yes, it's unfair. Jagger is just a tiny innocent sweet baby and not deserving of this vicious cycle with this wicked disease. I remember how happy you were when you guys were expecting Jagger while I was expecting mine as well. I was certain that I was having a boy as well because of the similarities of the shape of Annett's belly and mine, from what I saw in pictures. I look at my son now and I can't imagine having to see him go through what Jagger is going through. Your sweet boy has taught me about life also. I will never forget him even though I never met him. You and Annett have taught me about courage, being great resilient parents for fighting and educating yourselves about this deadly Mitochondrial disease. Yes, you are lucky to have been blessed with an angel like Jagger. I pray to the Lord to heal his pain.
ReplyDelete----Selwana
You, your wife, & your precious Jagger are in my thoughts & prayers. May your sweet boy find comfort. Mitochondrial disease is so cruel.
ReplyDeleteSebo and Annette,
ReplyDeletewords cant even begin to flow out of my mouth or keyboard the right way to help, but i will say Sarah and I LOVE ALL THREE OF YOU and reading these have teared me up as well. you cry and we cry with you! I cannot imagine the sadness and pain you're feeling, and we have been praying for you. I want to share this with you and while it may not help with any answers to anything this may help in the long run, i dont know (like i said...the words that come out may not be the right thing, but i want to try)
But, the Lord works in mysterious ways and at times it makes us angry, at times it made us sad, and other times it joys us. I am sure you and Annette are feeling a lot of the first two i named, but The Lord never says anything we have to endure will ever be easy, but he does say he will give us the strength and Grace to go through it. Those last two are extremely important because even though you cannot see it right now, you will "go through" and see the other side. You will have your friends and families there to help give you the strength and love you need, even when we dont say the right things at the right time. The most important thing is even though you're going through probably the most difficult thing you will ever have to especially as a parent, do not let yourselves (you and Annette) lose one another in this process. It is going to be vital that you become each others rock, when you get mad at one another due to the pain of what you're feeling, or even when you're sobbing, you need to hold one another and tell each other constantly you love the other and let each other go into one another.
Sarah and I want to be there with you and help you guys and I hope you know we'd be there in a second if you needed us! I know everything i said probably wont help or make sense now, but i hope you keep this entry for a later time.
I love you...all of you!
Chris
I'm here crying right along with you, my friend.
ReplyDeleteI do not know you, but our little church in French Lick, IN where Leslie Akers attends has been praying for your sweet little boy. I have no words to give you as I could not fathom the thought of saying goodbye to either of my sons. I do know that God is faithful and will use you and these struggles to bring Glory to His Kingdom in some way. My prayers are with you for peace and strength. God loves you.
ReplyDelete