Sunday, September 6, 2009
So confused as to where to even begin...
So yes it is Sunday and yes I should be in church. Let's just say that they are practicing for the Primary Program and there is no way on earth that Mason can handle it. It was so hard to just sit in the congregation while all of the other children were being directed to their seats and knowing that there was not going to be a seat for my son. I know that it is not fair to everyone else to have him even attempt it. But as a parent I already feel the rejection that he is getting. Please don't think that I am speaking badly of anyone in Primary. They are all fantastic and work very hard to accomidate Mason and his needs. This is just another "real life" situation that we knew was coming but perhaps not emotionally ready for. I love this little child so much and I just want him to be able to function normally and for it to not have to be such a struggle for him. We are trying just about everything from numerous therapists to various doctors. Everyone's answer has to do with the fact that he was a drug baby and what else should I expect. I am not going to take this for an answer. Yes he was a drug baby. Yes there is a chemical inbalance in his brain. Yes I am ready to medicate (or at least try). Yes I am scared. Yes I wish so badly that I could just make it all better. Yes I am tired of having to make a billion meals a day just so he will eat. Yes I feel hopeless and all alone. Yes I am tired of hearing how I just need to learn to deal with it. Yes I am so sick of all of the looks that I get all of the time. I could just go on and on. Bottom line is I need to get this kid some help soon. I have gotten numerous referrals to numerous specialists that somehow we never get to see because of one thing or another. I am tired of the dead ends. Something has to give and I need a good doctor who know what the heck they are doing. A doctor that will not treat me as though I am making this stuff up. I will run a freakin' video camera if I need to. Okay enough! It is Sunday and I should not be feeling like this. If any of you that read this have any input as to where I could possibly go that may be able to help please let me know. I have to get this figured out and I will be spending a great deal of time in doing so I just know it. I have to do this. For him. For me. For our family. I love my son just as much as any other mother or parent out there does and I am not going to give up!
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12 comments:
I don't have any advice other than to stick to your guns. My oldest daughter has been such a joy and such a trial. After four years of glares and snide comments about my "spoiled" child or my lack of parenting skills, or how "that girl just needs a good spanking" from other adults, and countless hours of frustration, stress, and self-doubt, I finally found someone who not only took me seriously, but who actually knew what the problem was, and it wasn't a doctor. It was another parent whose daughter had the same rare disorder, and recognized it in my daughter, and recommended she be screened. Doctors will discount what parents say, even though no one knows your child like you do. I hope that you find someone who can help you.
Our prayers are with you!
Love,
Darin and Kira
I am so sorry, Rae Lynn! You have every right to be frustrated. You are a wonderful Mom and will be blessed in your continued efforts...Our prayers are with you!
I don't have any advice other than have your husband give you a blessing for strength because it sounds like you are at your whits' end. Has Mason been given a blessing lately either?? Love ya and hope all works out.
I just feel like crying for you...sometimes a good cry helps!! I totally understand where you are coming from...There is no doubt that Mason needs you...that's why he was sent to you...you are going to figure this out, because Heavenly Father won't give you or Mason anything that you can't handle...I'll be praying for you...wish I was there to watch your other kiddos while you go to appointments...
Take it from someone who has struggled with doctors for 17 years, you need to always listen to your gut and remind yourself often that you are paying for their educated opinion. Often Doctor's like to make you feel like they know everything and you are ignorant. When you find a good one you'll know to keep them on your team, and when they are good they will treat your family and their office just like a team. You are not alone, though I know how it can feel that way, remember to ask for help when you need it. You were given this spirit to tend to because you hold the capacity within your family, marriage and heart to help him grow and achieve his plan.
Medically, keep a journal and it would not hurt a think to break out the video camera. Try finding some forums on-line or support groups on line. They are GREAT resources for doctor suggestions. I found my endo through a on-line yahoo support group and she has changed my life! I've grown into a medical researcher with my many, many, many medical challenges and I would be happy to help you research doctors. Let me know what insurance you have and what kind of specialists you are looking for - I'm on it!!!!!!
This is not something you just need to learn to live with! You and Mason are on a journey you will walk this together, and we can do hard things, just one step at a time ;)
Think how grateful Mason will be a few years from now that he has such loving parents who would not give up on him and loved him more than anything. You are So awesome and can totally do it, there is no doubt. :)
What wonderful comments so far - I especially enjoyed Christine's. Again, I don't have any advice other than to follow that motherly intuition and instinct you've been feeling, don't take no for an answer, and be relentless until you are satisfied that you have found the right path for your family. I'm certain it will be a journey, as it seems to me that most of life's greatest challenges do not have easy ends or answers, but the meaning is found along the way. I wish you strength, and joy, and know that you are a wonderful mother for caring and seeking the best for your kids - the kids who were meant to be yours for a reason!!!
Thank you all so much for your kind words, thoughts, and prayers. I do think that getting a couple of Priesthood blessings is needed by both Mason and Mom..as well as a few Temple trips for Mom and Dad. I did just stock up on some paper products from all of the school sales and I think that a daily journal will also be implemented. We are in the process of getting the children on our insurance so hopefully more options will open up. I am so grateful for great friends who really do care and are so supportive. Thank you ~ Love Ya!
sweet, dear, precious RaeLynn. You are an awesome woman! I feel so sad that you are frustrated and discouraged! You just can't give up. The Lord loves you and Mason and your little family! You will be blessed for your perserverence. I want to talk to you sometime about how I can help you. I love you!
It really doesn't matter what anyone else thinks of him, you, your parenting, whatever! It's between your family and Heavenly Father what is going on with him and how to deal with him.
That being said, I think he should still be in the primary program, and I think most people understand that he is a special circumstance and to just go with it! You're going to find some answers and something that works for him some day. Maybe his 'help' hasn't been invented yet. =)
Just ignore the snide comments or sideways glances. You're a great mommy and he's a great kid. (I'm tellin ya, have your sister come with him to primary each week!)
to say that you are an amazing mom doesn't even come close to conveying the truth to those words. I wish i could help. I'll pray instead! xoxox
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