Our Little Bear

Alright here it is, an update on our little Bear! We finally went to his genetics appointment on the 19th and it went amazingly well considering we had no idea what to expect. We figured we wouldn't leave with many answers, and while we don't know what it is, we did get some answers of what it isn't and that deserves a sweet sigh of relief! Barrett's Dr is almost sure that this isn't Marfan Syndrome (The scary diagnosis) apparently while dislocated lenses are very common in this syndrome it isn't associated with the dislocated pupils at the same time, thank goodness :-) ............ What this does mean is we are still wondering what it is. There is one gene that would mean that this is an isolated issue and as long as everything goes smoothly will be resolved with his surgery and contacts, of course this is what we are now praying for. Barrett's Dr was intrigued by him having never seen this before because it's so rare. If it does come back positive (which we wont find out for a few months) he still wants to see Barrett back because they know so little of this disorder and would like to study him a little more for further knowledge................ If this test does not come back positive then we will be in for a bit of a long haul as they try to figure out what it is, and what else it might affect. Since the issue in his eyes is a connective tissue disorder the other areas that are commonly affected are his joints and heart. There are not any other known genetic disorders that affect the eyes like this that they know of so they would be figuring it for the first time! So the answers could be a wide array of things............... The other thing that was brought to our attention however is that Barrett is displaying signs of another genetic disorder that affects the kidneys. The strange thing is that the signs he is showing are associated with his ears! The genetic world is a fascinating and confusing thing for sure. The Dr said that it is possible that he simply has these traits without them being associated with anything further. We will be having an ultrasound soon which will tell us a little more about this.......... Since Barrett is showing some differences on his ears we are also going to have a professional hearing test just to be sure that he isn't having any issues there. At this appointment little Bear gave some of his blood for the other tests needed. We got a negative test result back on one which was an answer to prayer and now we will be praying for a positive on the second, which will take a couple months to get the results back............. Over all we could not have asked for a more positive outcome from this visit. The Dr was amazing and proactive not wanting to leave anything unchecked. He was interested in our little boy and made us feel that he was truly putting his best interest first which we know is a huge praise! We feel so blessed to have a healthy thriving little man who continues to develop and change every day as if nothing was wrong. His sweet giggles and darling smile are a constant remind that our burden is such a small one compared to what some people have to face......... God is good and our hearts are full as we continue to move forward, as we continue to embrace this little boy into our family. Bear was made in Gods image and he has continued to teach us like any child does :-) We feel honored to love our little man and blessed to have all your love and prayer support...... P.S. I cant figure out how to make it break up my paragraphs, that's why all the..... haha

A quiet truth...

“My son is not “perfect” in the eyes of the world.” For the past few weeks this thought all to often dances across my mind whenever we are out. I see the way people look at him, and the pointing. Are they not aware that we CAN see them? We get funny questions about them like “Are they real?”… Nope just playing dress up with my 2 month old “Are those protective glasses.” Yes we are afraid your going to spit in his eyes. Or my favorite so far “Where can I get a pair of those!?!?!”

People have nice things to say as well, and I can’t blame them the kid pulls them off like a stud. Even the nice comments can be hard to stomach when your not in the mood however. It’s almost impossible for someone not to say something since its right there staring you in the face all the time, but as a parent you see so much more and you want everyone else to see it as well. He is also handsome, sweet, silly and the spitting image of his daddy!

Even more then what people see when they look at my son, I find myself struggling with what my son see’s, or doesn’t see. When I put his glasses on in the morning I get to watch his face light up and he brings out the big guns flashing smiles and squealing with delight. When I take them off of him he becomes reserved and calm, unsure of his surroundings and in constant need of cuddles (which I love). It’s a reminder that while he will be able to see, he will always be aware that he can’t see everything. My heart aches and my soul screams… “I want my son to see life the way he was meant to”

"Ahh but he is..." It's a quiet whisper; sometimes almost to quiet. It is consistent and caring, it is all knowing… And when I hear it my heart slows to a calmer rhythm and my mind once more focuses on what is true. My son was created in the image of Christ… I am in no way surprised that in this Christ continues to reveal himself to us, and call us to Him for our needs, but I am thankful He is a constant for us always. As a mother, a wife, a human I am falling short of my calling to shoulder this burden, but with His strength and grace I continue to get back up and continue on.

So you want to know what I see when I look at my son? A sweet little boy who still loves to be snuggled 95% of the time with or without glasses he is just a lover <3 A kid who can make your face hurt from smiling back at his darling little grin. A boy who already likes being dirty and screams his head off at bath time. My son who is perfect in my eyes…. And darling little glasses ;-)