Fine

 

I'm fine. Really. I don't know how I'm fine, but I am, or I was... (for the most part). It's been a long week so far and it's only Wednesday. And tonight I had a moment. Which I expected to have every now and then.

The week started out with the three of us meeting with the geneticist on Monday at the Lafayette Health Clinic. Just being in there and seeing the variety of disabilities that we did made me feel appreciative that Hunter wasn't in a wheelchair... that Hunter is fully 'there' and able to communicate his feelings towards us. (communicate as much as can be expected from a 1 year old who has a hearing age just short of 3 weeks). After 2 hours from the time we arrived, the doctor finally walked in. At which time Hunter had already completely zonked out on us. They start out by reminding us that this is not our fault. Hunter doesn't have Usher Syndrome because of something we did or didn't do. Which we fully understand. Then they proceeded to tell us that the chances of us having another child with Usher Syndrome is 25%. The same chance Hunter had. And as they said, it's a totally different roll of the dice, and sometimes you can roll the same thing twice. Fabulous. Not the best news, but it's the facts. He then told us about the possibility of doing IVF and weaning out the embryo with the Usher gene. To me, that's playing God... and we're not big fans of that. What if we got rid of the embryo with Usher, implanted the other and our baby was born without a limb or with other birth defects. I would never ever ever in a million years be able to live with myself. What I'm trying to say is no matter what, it's not my choice to make. It's religion vs science and modern medicine, and as tempting as it sounds, I'm not sure it's something I could ever choose to do. For now, the thought of having more children will have to be put on hold. Blair needs time to let this all settle in, and I think we both need to do a little soul searching to decide whether or not we will have anymore children. As sad as it makes me to even think about not having more, Hunter hasn't been through any of the struggles that RP will cause him. It won't start to affect him for at least (hopefully) another 5 years. While emailing another mother, Blair was finally able to pin point how he feels about the situation... and it's that there's nothing worse than watching your child suffer. There's absolutely.nothing.worse. I have been having baby fever so badly lately. I want to be pregnant again, I want to have another newborn in the house, and most of all I want Hunter to have a sibling. He is one very lucky boy who had 5 cousins born last year, so either way he will never be alone. But it's a matter of deciding whether or not we are willing to take that risk.

Fast forward to today, Wednesday. My mom came with Hunter and me to Baton Rouge for therapy today. But the morning started with a visit to the pediatrician. Hunter has had a rash on him for the last few days that looked to me a lot like eczema. After bathing him with Dove sensitive and coating him in cetaphill, it was only spreading. Rewind three weeks, and Hunter left the sitter one day with hives and a fever. Since it was after 5, we just went straight to the ER. It was far from normal or anything I had ever seen, and it turned out to be what they thought was either an allergic reaction or something viral. He was on meds for a few days, but by the next morning the fever and the entire rash was gone. Which covered the back of his legs from top to bottom. Anyway, this current rash that has a really long name is something that usually comes after a viral infection, it doesn't itch, it can't be treated, and it takes anywhere from 3-8 weeks to go away. So good, no meds and it doesn't seem to bother him.

We took off for Baton Rouge after only a 20 minute nap in the ped's office, and he was bright eyed the entire way there, but did surprisingly well on such little sleep. He lasted a full 50 minutes until he was done. We got 5 different head turns to 5 completely different sounds and lots of noises from him, so we were very excited. Our goal in the next week is to get him to notice and respond to 5-8 totally different sounds. Oh, and bubbles are his A.B.S.O.L.U.T.E. favorite new thing! Thanks to Aunt Shelley (our AV therapist!) Every time he even glances at the bubbles he is pointing and wants them that second. Even at 6:30am. We should really take them out from underneath the carport....

So after a long day and a birthday dinner for my brother tonight, we didn't get home until 7:30 when Hunter is normally in bed for 7. He did surprisingly well, and we were lucky that he fell asleep on the way home from BR and stayed asleep until we got back into Lafayette. But when I took away his toy to put him in the tub, he completely lost it. He cried the entire time he was in there so I made it fairly quick. After brushing his teeth he pulled it together because he loves chewing on the toothbrush. Not long after sitting in the rocker, he layed his head on my shoulder and was out. My mom came by to get her car, and made a comment about how I never stop. I don't remember exactly what she said, but something to the extent of my life being non-stop and how the road that lies ahead of us seems so daunting. I will add that she mentioned she wishes she could take it all away, as we all do. But my life has always been non-stop. I wouldn't know what to do with myself if I didn't always have a zillion things going on. Between birthday parties, weddings, wedding and baby showers, bachelorette parties, fitting in girls' weekend getaways, and hosting half of the forementioned, it really never stops. I keep making the comment about how our wedding schedule is slowing deminishing and it's kind of weird not to have 18 in the next year! But maybe it's all for a reason, maybe it's because we've got new things ahead of us. I have never really felt 100% fulfilled with my career, only because I always wanted to do something where I made a difference in the world. I have always wanted to help other people. And I don't mean by being a CPA and helping people with their taxes. I want to make a real difference. And although I may never directly save lives, I plan on saving Hunter's quality of life, and hopefully many many more with Usher Syndrome.

This life, this diagnosis, this pain staking syndrome... it's not what I ever had in mind for my life or my children, but it's the card we've been delt. And I'm fine because I have to be fine. I have to be fine because I have to be a good and reputable employee at my full time job, I have to be the best wife I can be, I have to be the kind of friend I've always been in the past, and I have to be the best mommy Hunter could ever ask for. As Hunter was falling asleep on my chest, the tears just started pouring down my face. Blair and I are his rock, we are all he knows, we are his providers, we are his number one advocates, and most of all we are his biggest, and I mean biggest fans. If you could see us at home on a normal night after work, it's like we are two children fighting for Hunter's attention to play with us. I'm fine, but like I said, I have my moments. So I had to play the song Blessings, (the second song on Hunter's 1 year slide show) to just send me a little reminder that everything happens for a reason.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise