I want to start out saying that I am a very blessed girl! There is no doubt about this! But.....
There are some things that can ruin my day, no matter how blessed and thankful I am feeling. Here are a few that occurred this week, that have left me feeling sorry for myself.
I love when I am out with Gavin and people take the time to say how cute he is! But, I hate it when they look at him and say, "AWW, he's asleep." or "What a sleepy boy!" This may not seem like such a big deal, but it is to me!
Gavin is almost never sleeping during the day, but people always think that he is! When people say this to me, it's like a slap in the face to me, because it forces me back into reality.....Gavin is not typical. Gavin looks like he is sleeping because he can't sit up on his own and if I'm holding him, he has his head on my shoulder because he can't even hold his head up very well! Yes, he may look like he's sleeping, but he's not!
I also hear, "Oh, listen to him snoring when he sleeps!" For one, He's NOT SLEEPING! And, for two, he breathes like this a lot of the time because his airway is so narrow and small. He's NOT SNORING!
These things may not seem like a big deal, but they are to me! I am so sad that my 3 1/2 year old can't even hold his head up very well and I am sad that he has to breathe loudly! I feel bad for him and I feel bad for me too!
My day is also ruined when I see another little one with Down syndrome. I LOVE those with Down syndrome.....in fact, my dream is to adopt a little girl with DS! But, when I see another child with DS, it makes me see just how far behind Gavin is and it makes me angry that all of this possibility was taken away from him due to medical error! I want the Gavin that he COULD HAVE BEEN!
I am crying my eyes out right now and I know that I will feel better again in a day or two, but right now, I'm hurting for the boy that could have been.
Another thing that gets to me is when someone tells me, "At least you have 3 other healthy boys." Yes, I am SO BLESSED to have 4 boys and that 3 of them are healthy, but this doesn't change the fact that Gavin isn't! I mourn the loss of him as a typical and healthy child everyday!
Oh, and I also dislike it when people say, "At least Gavin is alive." I KNOW! He could have died several times in his life and I AM BLESSED just to have him! But.....this doesn't change the fact that he will never be a typical child with Down syndrome! And, it doesn't change the fact that Gavin's life expectancy is short. And, this hurts!
I love Gavin dearly! I AM BLESSED to have him in my life! He is seriously the greatest gift ever given to me, besides Jesus dying on the cross for me! I am so thankful for both of these gifts!
But, I am the one that has to wake up each day and mourn the loss of the boy that Gavin could have been. I am the one that has to carry him everywhere, entertain him since he can't get around to do this for himself, dress him, feed him by a tube, take him to tons of doctors, and have people say well intentioned things to me.....that just really end up hurting me in the end.
So, even though I am SO BLESSED to have this little man...
...it is a very emotional job to have!
I love Gavin with ALL of my heart! I just wish that he could be, all that he could have been! And, this breaks my heart.
This verse really touched me and had me in tears again:
"Do not look at his appearance or at his physical stature, because I have refused him. For the Lord does not see as man sees, for man looks at the outward appearance, but the Lord looks at the heart." I Samuel 16:7