We waited a little over an hour for the Dr to come in and say, in less then three minutes, that Lillian is too immature and too delayed to even attempt studying the mouth/speech problems. All along, we have been being told that Lillian's speech is impeded due to her structural problems. Not that I know anything whatsoever, but I'm not sure how he can tell just by looking at her that she is too delayed to try the study. He assured me that he is very experienced in this area, which I have no doubts of, but it just seems like I'm missing something. I am SO disappointed, and that would be an understatement. I feel crushed. He went on to say it could be YEARS before she was up to doing the V&E. He told me there was no reason why she shouldn't be able to speak, so it was her brain development that is the problem. He sees that she is receptively there, but not able to get it out. He told me he didn't want me to be discouraged....um....ok. I just blurted out that I am discouraged. I then proceeded to cry and try not to cry so I could try and make sense of the things he was saying. Which made me feel like a complete idiot. He didn't seem to be at all impressed with the speech report I'd given him. He didn't even read it prior to making his decision. He then went on to tell me that he did these types of surgeries on kids who were 13 and 15 years old. If that didn't just want to make me puke. He also said her tonsils are pretty big and perhaps they should come out and that should not have any bearing on her speech...once again, contradictory to what the ENT has said. Also, we've seen three different doctors in the last month and all of them have had a different opinion on the size of her tonsils. It is mind boggling. Are they big or not? Then I feel like, if not one person can agree on the size of her tonsils, how much of what we are dealing with in the area of her speech is subjective? So, the car ride home again was brutal. Struggling to just accept it, really what other choice so I have? I was smacked in the face, again, with how hard this journey is. What a roller coaster. I felt, again, that overwhelming pressure of thinking how hard it is to bear at times. I remember on her first visit back to the developmental peds clinic, the doctor saying that her life should not bring our lives to a screaming halt. That the world did not revolve around her. Truth be told, when you have a special needs child the exact opposite happens. The dynamics of your family change, your finances change, it affects every single aspect of your life and sometimes, its a hard. Very hard.
My wounds are gaping and hurting right now, so please understand my venting. Sometimes, I just need to. As always, I'm thankful, just hurting. God is good all the time.
**something else I remembered...he also stated her tonsils are big enough, that if he did do more work to her palate, they could cause her airway to obstruct again.
I'm so sorry that your hope was broken today! This must be heartbreaking!
ReplyDeleteAnd, obviously that doctor who told you that "life shouldn't come to a halt, and life doesn't revolve around your special needs child".........well, they obviously never had a child with special needs.....or they just don't care very much!
Life does become so very complicated when families are given a special child! There is no way around it! And, only those who walk this road can possibly understand the heartbreak that we face daily!
On the other hand, those not walking this road are also not given the extreme blessing of a gift that we have been given! Our lives become more complicated, but they are also filled with SO MUCH MORE!!!!
I pray that you are given hope and grace concerning this blow.....but try to focus on the blessings that come from having sweet Lil! I'll be thinking of you! Big Hugs!!!
Many many prayers. Those kinds of appointments just plain suck.
ReplyDeleteI too am very sorry for your disappointment, I know it is very hard. But remember one thing Lilian does have 4 older sisters, and you know your first child always does things faster than the ones later, due to the fact that they rely on the older sibling to speak, and do for them. It will be challenging, but you need a family meeting, and everyone needs to start working on not doing lillians speaking for her. Rough I know, but it is worth the time if she only starts at least making a little progress. Wish there were a magical fix, but will say a little prayer for your family to the strength to let Lillian grow:)
ReplyDeleteMichelle, I am so sorry to hear how discouraged you are with all of this. Just don't give up your Hope, that is the most important thing. I will continue to pray for all of you and I know it seems hopeless at times but things are going to work out for the best, I really believe that. Lillian is such a beautiful and special little girl and she is so
ReplyDeletelucky to have a family that loves her so much.
Just think if she had been born into a family who didn't want to deal with all of this and might have just given her up. God picked you because you are a wonderful mother and you will continue to do what is best for her.