In the hospital, especially the Mayo Clinic, Lincoln is pretty “normal.” He has ebstein’s anomaly and so do 3 of the other kiddos on the unit. It doesn’t make you feel so alone or so much of a problem. Now we’re back home where g-tube dislodgements at the beach are a problem, the regular pediatrician doesn’t feel comfortable dealing with blood thinners, we have no monitor to tell us his exact cardiac rhythm when he’s having a melt down and I don’t have that extra set of expert eyes. It isn’t easy and we are certainly not above asking for help! Thank god we have family near by!
We are getting the hang of things! We are adjusting to the new meds and the side effects they come with. Lincoln needs frequent blood draws and has been handling them like a champ. ( even though it totally sucks) hopefully they will become less frequent soon.
Although I wish with my whole heart this wasn’t how things had to be for us, it does change who you are and how you do things. You take nothing for granted. From small things like sleeping in a bed to things like dipping your feet in the ocean. We went down the shore for the night when we got back, of course Lincoln couldn’t go because of his wounds but I did bring Luna to the beach. Watching her feet touch the wet sand was so sweet. She would lift her little foot off the sand and then tap her toes back on it. I’m sure reading it doesn’t sound like much but watching the discovery was beautiful. I guess it’s been awhile since I’ve dipped my feet in because it felt different to me too. Maybe this time I just took it in a little more. Before Lincoln was born I was taking things for granted, I’m ashamed of it but I was. Taking things slower and taking things as they come is a wonderful thing.
I’m not going to change the fact that Lincoln’s life will forever need surgery on his heart but I can help him live his best life always! If we aren’t going to live then what is all of this for anyway? We’ll take things day by day, be thankful for what we have been given and even when it’s hard to look on the bright side, we will!
On a totally side note, I just spent the last 5 days in the hospital having major gallbladder issues! They ain’t kiddin’ when they say ya need to take care of yourself or you’re useless to your kids! So thankful to be on the mend. I’m promising to myself that I WILL take better care of myself because these babies need me!
life love and lincoln 