As a mom you have so many hopes and dreams for your children. You want everything in the world for them and you want them to be the best and achieve all of their dreams. Well, something that I’m really starting to learn in this life is that sometimes Heavenly Father has a different plan in mind.
Yesterday, we took Caleb up to Primary Children’s Hospital, after waiting almost 3 months, to see a pediatric neurologist. We found out that our sweet, funny, happy, blue eyed boy has Duchenne Muscular Dystrophy, or DMD. DMD is a genetic, degenerative disease that affects all voluntary muscles, and the heart and breathing muscles. Caleb will be in a wheelchair no later than 14 and most likely not live past the age of 30.
It was such an incredibly hard thing to hear. You never want to hear that your child is the one that will be different and possibly get teased and not be able to do the things that everyone else can. You never want to hear that the hopes and dreams you had for your child may not happen. I have gone through so many emotions but mostly sadness. Every time I look at his face, I can’t help but get a little teary eyed or simply burst into tears!
But I do know, without a shadow of a doubt, that Caleb was sent to our family for a reason. He truly is so happy and content with life, ask anyone who knows him. I also know that every moment in this life matters. Family is so important! I don’t care if I ever live in that big dream house or drive a Tahoe or have fancy clothes (yes, things I wanted before :). All I care about is making every precious moment count.
I want to thank everyone that has fasted and prayed for little Caleb and for our family. We have received so many texts, emails, and phone calls. We love you all so much and I know with your awesome help and support that it will be okay and we will be able to give Caleb the best life possible!
13 comments:
oh, kayli! my heart is breaking for you. i cannot imagine what you must be feeling. you and caleb will be in my thoughts and prayers!
Kayli,
Since the moments I heard my heart had been breaking for you.
You know you are a special mom if heavenly father has entrusted such a special spirit with you.
I really want to offer any kind of support you need. I really don't know what you need...prayers, financial support (I can offer a little but we can do fundraisers), ect. I'm sure this will be a humbling time when you have to ask for help so please do.
His smile is so heartfelt...although the info is discouragine technology is amazing. I'm sure it'll come a long ways in a short amount of time.
Love you!
Kimri
Kayli, I am so sorry to hear this, but I do have to say that you have an amazing little boy who also has amazing parents, and that is all that matters!!! I agree with everything that Kimri said and after you get through the sadness I know that you will be able to focus more on the blessing part of having such a wonderful little guy and all of the awesome things that he can and WILL do. He may not be able to fulfill all of the things that most parents hope for, but he will fulfill greater things!!! It is sad that you all have to go through this, but how awesome is it to know that you have one of Heavenly Fathers STRONGEST WARRIORS in YOUR HOME!!!! Just think, Caleb was one of the handful that had the opportunity to escort Satan out of heaven and into outer darkness so we all could have the chance to experience the things that this life holds for us. Please let me know if there is anything I can do for you (even if it is listening while you vent). Love ya!!!
Kayli, I am so sorry to hear that. It is the worst thing to hear from a dr that your child has problems, but I have come to learn that you are given that child because you can handle it. I know it is very hard but you are an amazing mother and will get through this. You and your cute little family are in our prayers.
Oh Kayli! :( HUGS!!!! You are an amazing mom. We will keep you and your family in our thoughts and prayers. Let us help out with whatever you need.
Kayli & Andy,
I'm so sorry to hear this. It's so hard to imagine that anything could be wrong with that smliey little guy. It's always humbling to see that life can change so fast. I'm sure that you all will be blessed in so many ways to handle this challenge. Like you said, you are already cherishing the moments more and that is a gift. You all will be in our thoughts and prayers! Lots of love, Michelle
Just want you to know that I am praying for you and for your little boy! You are such a wonderful example of faith. My love and faith reach out to you and your sweet family.
Kayli! That is not good news. Im so sorry. Hang in there. Cherish the moments that you have now. He can do so much now and take advantage of it. Make his little life as full as possible. And, if he does have to be in a wheelchair, there is so much that he CAN do. Ive worked with people with disablilites and it isn't the end of the world for them. I know as a mom you want the best, and I know you will do a good job of giving him the best! We will be praying and thinking of you guys and keep us posted on any new news!
I'm so very sorry! I can't even imagine what you're going through. You always want your children to be healthy and happy and you never want to hear that something is wrong with them. Your family will be in our prayers. I agree with what Kimri said. You are a very special mom to be blessed with a child like Caleb. He is such a cute, sweet boy! We love you guys!
I read this a couple of days ago, I haven't known what to say. I looked up DMD on the internet to learn more. I don't know if it is this pregnancy or what, but every time I think of your sweet little boy and the challenges ahead for both him and you, I seriously start to bawl. I grabbed my little Evan out of his bed last night and put him in our bed just thinking about Caleb. I wanted to hold my son close. Needless to say, you guys have been in our prayers and we will continue to pray for you. I have been wanting to call you, I wish I could do more for you. I may not see my family much because of my situation, but you guys are very much loved by me. I had a great time with you and Jill last summer, and I wish we could do it more often. I do love you, I want you to know that. Even now, I'm crying (I really am a big baby) My heart, prayers, and love go out to you guys.
Kayli- I'm SO SO SO sorry!!! I can't even bring myself to imagine how hard that must be. Thanks for your beautiful perspective on what is important in life. You will all be in our prayers. Thanks for being so great!
kayli! I am so sorry to hear about Caleb. My heart just broke when I heard the news. I cannot imagine having to go thru that, but know that Heavenly Father gives us trials for a reason and is there for us every step of the way. You are such an amazing and strong woman. If there is ever anything I can do for you, please let me know!!! Your family and especially Caleb will be in my prayers for a long time!
I am so sorry to hear this. If nothing else, Caleb is a very lucky little boy to have been born into the family that he was. You will give him a wonderful life despite the oppositions you all may face.
Just know that you will be in my prayers. Love you!
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