I have been struggling to write this post, how do I say it?
How do I explain how I am feeling.
I can't, I'm numb.
Mason's Riddle is almost solved.
In the past week we have had two very large Diagnosis.
The only thing left is to find the all the pieces to complete the puzzle.
On November 15, 2010 we learned that Mason has a Genetic Syndrome, Smith-Magenis.
We have learned a little about SMS in the last week, but have alot more research to do.
How do we feel about it?
It's awful.
But we also know he will get the help he needs and so will the rest of my family.
I am still dealing with the shock I think.
I have had a few moments with a tear or...
I don't think it's fully there yet.
Today, November 22, 2010 we learned that my son has been diagnosed with Autism.
Pervasive Developmental Disorder - Not Otherwise Specified, to be exact.
Now we kinda new that eventually we would get this diagnosis.
And we are really happy to get it now, so Mason can get the therapy he needs.
Early intervention is the key we have been told.
I have been thanking our Saviour all day.
This has been the hardest two years of my life & he knew I was really tired.
He knew it was his time to tell us.
He knew that we were mostly emotionally ready to handle it.
Does that mean we are not crushed? No not really.
We are upset for Mason & for our family.
This is not what we dreamed about.
This is not what we thought our life was going to be.
A good friend sent me this message today:
"God wrote the story of his little life before he was born. Nothing can change who he (M) is, just your job to manage it".
This could not have come at a better time, thank you.
So Mason has Smith-Magenis Syndrome & Autism.
Yup, still numb & overwhelmed with the sheer amount of things that need to be done in the next fews weeks.
But so grateful to have a starting point.
Thank you for your continued prayers & support.
Love that text from your friend - so true! Continuing to pray for you and your family!
ReplyDeleteI am so glad you are finally getting the diagnosis you need to give Mason all the therapy etc he needs. I'm so sorry you have to hear those words, but not hearing them, won't change it... and knowing will help you guys so much! Your family and precious Mason are in my prayers. Hugs to you beautiful mama!
ReplyDelete~Amanda
Hey Dana, we too just received Dom's autism diagnosis. In a way I'm thankful that we've been on this special needs pathway for some time. It has softened the blow a little. Dom has two rare syndromes (Beckwith-Wiedemann Syndrome and Van Der Woude Syndrome) and has had his trach since he was 3 months. We have had plenty of time to come to terms with this. I couldn't imagine how hard it must be for you to be hit with all this news at once. You are doing a fantastic job! I'm glad you have the answers you were seeking and wish you all the best. X
ReplyDeleteHugs and lots of thoughts and prayers to your family!
ReplyDeleteI cant even imagine how overwhelmed you are by this - but i am so thankful that the riddle is almost solved - so you can all get the support you need & deserve.
ReplyDeleteWIshing you all the best & thinking of you always!!
I'm so relieved that you finally have the diagnosis. And so sorry it is such a heavy one. But you are so strong! M is a lucky little boy to have such an amazing, strong family to fight so hard for him, to love him and push for him. Now you can go do whatever the next steps are in getting him the help he needs. ::hugs::
ReplyDeleteDana- wow. I'm thankful that you have a diagnosis.
ReplyDeleteI want you to know something. your friend was right. God knew about Mason's little life before he was even formed in your womb. God knew. And God knows his future too. Whatever will be, God will handle it.
You are a good mommy. Mason is in good hands with you. God gave him to you for a reason. don't forget that! (even though we may never understand why.)
I'm so glad you finally have answers. I know they aren't the answers you want though. We never want to hear that something is wrong with your child.
Take your time working through this. Rest in Him as you grieve everything you had hoped for. Take one day at a time. You know these things already.
I'm praying for you. I love you. Rest in Him sweet Mama.
Prayers and Blessings for you all.
ReplyDeleteThank God for diagnoses ... I'm sure hearing what it is doesn't make it any easier on you, but at least it's a starting point. I hope and pray that this helps you and Mason to start getting the help you all need.
ReplyDeleteThis is a marathon and a half for you, isn't it? I'm so sorry. I know you need a rest, a break. I hope and pray help is on the way for you.
Much love.
:)
ReplyDeleteK
Answers like this come with so many emotions. My Uncle, nephew and my daughter (high functioning) have autism spectrum. It is a challenge to watch my daughter stuggle through the simple things and my heart soars when she has even small victories! Autism is not who she is, I don't let it define her. I tell her that there are reason for the way she behaves but no excuses, she has to work harder to do the things that need to be done. It makes her a stronger person, and I hope gives the ones around her a little understanding. Hang in there, it is a bumpy ride but it all works out.
ReplyDeletegood luck mama. we are pulling for you.
ReplyDeleteread this with tears! i too am a mummy of a wonderful little sms kiddy. my daughter is 5 this march and the joy of my life and yes she has smith magenis syndrome. it is not an easy path but i wouldnt step of it for a moment! love and husg from another mummy who really really gets it and who cried every day for 2 years in utter shock! I know your words to the core of my soul, they are my own xxxxxxxx
ReplyDelete