I’ve been blessed many times over, and I do count them. My kids are the most wonderful little people in the world. I am a little biased, but it’s true. I have wonderful kids, just ask my mom (hey mom).
Having kids comes with no guarantees whatsoever. You don’t know that the child you carry in your womb is going to come out with a congenital defect or a surprise disease, you just take it as it comes.
It’s very much the same with adopting. People outside an adoptive circle will assume that we get to choose kids free of disease and deformities so that they are ‘perfect’. Well lah-dee-dah if life would be that simple.
Adopting Sweet Pea was a strange tale because our adoption was so uncommon. In fact it’s never been heard of before or since. His situation is very much one of a kind. Don’t ask the super-duper, private details because I won’t tell you. The basics are his lovely birth mom felt she couldn’t handle caring for him and gave him up at the hospital when he was born a month early. The hospital is required to call social services when that happens and so in the end, we ended up being called for this beautiful little boy needing a home.
Definitely a no-brainer.
Again, no kid comes with that stamp of guarantee that everything is in working order. In December of 2008 he had his first seizure. Scary as hell. I can’t even begin to tell you what it felt like at that moment, the helplessness I felt and the absolute fear.
The average Joe hasn’t any experience with seizures. As a parent with a child with a seizure disorder* I can honestly say there’s no such thing as an old pro, but I’ve got a handle on what to do when it happens. Sweet Pea will get upset about something: a banged knee, being said ‘no’ to, and that starts the cycle. He starts to cry and exhales all of his breath and for some reason, if we can’t get him to breath in again, he of course passes out. The normal child just wakes up after taking a breath. Our child can go into seizures at this point. It’s the most hands-off disease as all you do is lay them on their side and you wait for it to be over. For us, if it goes over 5 minutes, we have to call an ambulance. The average epileptic seizure is less than 3 minutes. Our son’s longest seizure was 15.
Breath mom, he’s fine. *smootch* However this may be a good time to get a coffee and forget about reading the rest.
*ahem*
I have a fear that churns up every time he holds his breath. Every single time he begins the cycle into seizure-land I wonder if this is going to be the time that he is going to die.
Many people don’t think of epilepsy as a fatal disease because it is so manageable with medication. Brutal medication mind you, but still, I don’t think any person with epilepsy would choose to just go with it rather than have the medication. Seizures can kill. It can be the seizure itself or the lack of oxygen to the brain because the lungs are in spasms too out of control to inhale enough air.
This week my son has had 2 small seizures. I call them small because for the past year they’ve been less than 5 seconds long. I thank my lucky stars for that let me tell you. Since he’s been on the iron supplement his pediatric neurologist put him on to try to curb the breath holding spells (as he called them), having 2 seizures in a week is too many. It means the dosage of iron doesn’t seem to be cutting it anymore. Thankfully being that the ‘fix’ is a supplement, we can increase the dosage now rather than wait the 3 months to get in to see our pediatrician.
Could it be the excitement for Christmas? I don’t know. Could it be the growth spurt he’s been in? I don’t know. I don’t know, I don’t know. I think that’s why when we were trying to figure this all out and seeing a neurologist I almost hoped for epilepsy, because then we’d know. We’d know and deal and slap him on the lesser of the brutal medication.
But we don’t know. So we wait for the next seizure to occur and again I’ll wonder if that one is going to be the one to take my baby from me.
*Our son has an unknown seizure disorder, meaning it’s not classified as epilepsy so they don’t know what it is, what it’s caused by or what to do about it. There’s no funding for an non-epileptic seizure disorder so no one will know what the issue is.
Dec 23, 2010 @ 06:45:33
Yes, I poured myself a coffee, had a tiny weep and read on. The fear or the feeling of helplessness will never leave you. The only thing you can do is try upping his iron intake, I guess. And always remember to love, laugh and live like it was your last day on this beautiful planet.
Dec 23, 2010 @ 14:27:30
Poor little guy..
Dec 26, 2010 @ 12:19:49
Oh, my heart is with you.
Jan 11, 2011 @ 13:11:18
I don’t usually read your blog. For the most part, I feel that it really is not my business, and that it is your private area to spew off the stress and tensions of life….especially pertaining to our relationship and family life. For some odd reason, I did a google search for your name today and was brought to your blog post….kind of scary that a search with your name would bring me to a place where you are supposed to be “anonomys”.
Anyway, on with the post…..but first let me wipe away that tear that is blurring the screen….
I fully understand what you saying, the fear is always there. During the next seizure we could loose our little boy. We could also loose him at anytime due to a car accident, or a bad fall off of a stool on to the tile floor, the difference with the last two is that they are not incidents that are on our minds all the time. His seizures are something that we will always be aware of because they occur more often. I guess what I am saying is; I am with you in our concern….it would be very painful to deal with losing that little man, that little boy that God had gifted to us so that we could love him and care for him, that little boy that we call our son. To think, you had to drag me into adoption, and now I wouldn’t want it any other way….sometimes you are very wise, and very much in tune with the spirit of God – and I am very blessed to have you in my life.
I love you, and together we can deal with the future as it comes.