I have days that I am very sad when I think of all of Kinnick and Carver's delays and disabilities. I'm sad that they can not see the things we see. I'm sad that they have to work so hard to do the smallest things. I'm sad that they have to go through so many painful surgeries. I'm sad that Carver can only hear with his CI's on. I'm sad that Carver can not walk. I'm sad that Carver can't sit by himself. I'm sad that they can't enjoy a bag of M&M's. I'm sad that they still require their G-tubes for a great deal of their nutrition. It just seems so unfair. It's so hard to believe that God has a plan for these beautiful children. It's so hard to understand why they need to struggle like this as part of the plan. I know God doesn't make mistakes, and I try to be strong, but some days are just harder then others. I love my children with all of my heart, but it just breaks to see them struggle some days.
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7 comments:
I just wanted to say I have the same days. I just wrote a post about one such day on my blog earlier this week and had a couple of comments and they made me feel less alone when I feel like this. I hope by me leaving this comment you can feel less alone.
I also found a local support group that helps - it's nice to connect with people who are walking this alternate path in life.
Hugs to you. We all have those days, you are certainly not in it alone. As much as we are thankful for and love our children so much it is hard sometimes trying to encompass it all. You are doing an awesome job (that's why God chose you to be their Mom)!!
It is okay to have these days, but know this... I read this blog and look at the pictures of your gorgeous children and see a full and beautiful childhood and two happy kids, and sometimes, that just has to be the focus, you know?
Please know we are praying for you! I don't have any wonderful words, except that we love you and you and your family are doing a superb job with everything you have been given to deal with!
Love
Neva
I have read your blog for quite some time, but have never commented. I also delivered my twin boys at 23 weeks, however we lost Bentley due to an infection he suffered in the womb. Rhys kept us on our toes for weeks before he finally allowed us to believe we would actually take him home. He will be two next month and still does not/will not sit on his own. Nor can he stand unassisted or walk. I see so much improvement from where we started, but he is still horribly delayed and has to work extremely hard for things others take for granted. Though we will feel forever blessed to have him with us we also struggle with his delays and disabilities. Rhys has not officially been diagnosed with CP, but he has many of the markers for it.
I just wanted to come out of "hiding" and say I know what you're feeling and often think the same things. Even though we do whatever it takes to help our kids it is difficult to always stay upbeat and positive. I have been inspired by your constant efforts towards your kids, and truly impressed by your perseverance in regards to the insurance/medicaid rigamarole we've all had to deal with.
I wish I could say I "know" what you feel. I don't. Lets me honest, I have NO clue what its like to have a 23weeker. I do know K and C have a tremendous life because of you! You are the one who can comfort K like no one else in the world. She may not know what you look like, but I promise she has an imagine in her head and "knows" her Mommy. C, well he is such a special boy. Maybe he is laid back because he knows that is his roll right now. He is the sweetest child I know! He does have challenges but he is alive and defeated the odds for a reason! He is truely a gift. He has came SO far because of your efforts and perseverence. I remembering finding your blog when they were tiny and in the hospital. Thinking back over 2 yrs. My thoughts still are the same. God does have a plan for those 2. They have been choosen for a reason. Hopefully He will comfort you and pave a way for Carver to have 2 working ears. I know that would mean the world! We are praying my friend :)
Hugs to you!
I am not one of those people who thinks that you can state that "God only gives you what you can handle" and that somehow makes it all better. Sometimes it just stinks. Everyone has their challenges- some more than others- and a lot of the time it just stinks.
Know that you have lots of people who are thinking of you and your darling children.
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