One thing I really think is great about blogging is the fact that I can write my personal feelings and thoughts about my life with my baby girl. I will say this though, I am not one to share my personal battles or fears that I have but today I feel like I must. So I will. I’ve been battling this for 2 months now and I have got to get it out, so I will vent.I will start with the one thing that has put me in this position.
I took Remi to get a hearing test at the Children’s Hospital in Dallas sometime in January. There wasn’t a reason to believe Remi wasn’t hearing right, but because of the fact that she has down syndrome, it’s always requested. So we had ophthalmology and audiology scheduled for the same day. She passed her eye test with flying colors but she failed her hearing test. “No worries” said her doctor, “she seems to just have fluid in her ear”. As a mother you still worry no matter what so you can just imagine how nervous I was when her follow-up test came this past Monday. They tested her eardrums and there was no response to sound. They tested her hearing and she, again, failed but could hear louder noises. She is at “mild hearing loss”.
Hearing those words come from the doctor’s mouth gave me an urge to cry. I didn’t know how to react other than to cry, but I am not one to cry in front of others and especially not in front of Remi. The pain from that experience took me back to the day I was told about Remi’s down syndrome. I sat their thinking to myself that this was not happening. That they had the wrong results. There was no way that this perfect little baby had a genetic disorder…… I finally began to cry after 2 minutes of disbelief that day. How were Ryan and I suppose to handle it all? How are we suppose to prepare ourselves for the list of illnesses that can befall on our baby just because of that extra chromosome? We went for test after test after test since that day and thankfully they all came out with good results. My thoughts were, “Ok. We are out of the woods and there is nothing else to worry about.” Boy was I wrong and so that brought more fear of the unknown. Just yesterday I was watching a movie about a girl that dies from cancer and her mom helped her plan her funeral. I cried. Not because the girl dies but because I was thinking how that’s a chance for us. To think that my Remi has a greater risk for cancer kills me so deeply. I don’t ever think about it but somehow, this hearing test has brought all my fears forwards.
So our next step is to see an ENT specialist, get tubes put in her ears, and pray that it’s just fluid in her ears. She goes back for retesting in 8 weeks so being strong for Remi and just doing all that I can for her is all I can do for now. I don’t want her to know that I’m all wacked up. She needs her mommy happy at all times so I will do so.