The monsters

"I'm friends with the monsters under my bed,
get along with the voices inside of my head,
You're trying to save me
Stop wasting your breath
You think I'm crazy,
And that's not fair"

This song has a strong feeling in my heart for my son. To be only seven he already battles depression and anxiety and most days he hates himself. His inner struggles are bad. He says he is bad, he hates his brain, he hates that everything that he does he can't control and it frustrates him.
This is his life. The meltdowns that look that like a two year olds temper tantrum, the difference is... it's not for attention, he can't control them and you can't stop them. He struggles to make sense of his world, his self. He feels he let's people down and he feels so different from everyone else. He thinks no one likes him.
Today was hard.
Today he broke his brothers heart. 
Today he scared me more than I thought I could be.
I am not going to explain everything that happened because we need to work through this first. We need expert advice from his trusted and loved psychologist.  But he needs prayers for comfort and peace. He needs guidance and assurance that everything will be ok in his world.
That's all I ask. He's only seven and shouldn't have to feel this way about himself. My heart needs some comfort. My mommy heart is breaking for my sweet boy.  I can't explain how hard it is to watch him struggle with himself. I hate to watch him cry and tell me he doesn't want to be here. That he's a bad boy and no one loves him.
I feel helpless and sad. I want to help him, I want to make him see that he is wonderful and perfect. I couldn't love him anymore than I do now no mater what. No matter who he is or was or is going to be. I just want him to understand this. I need him to understand that he is loved and he is needed.

On your way...

I am so proud of you. 

My miracle baby that came into this world 8 weeks too soon, you have just finished your first week of Kindergarten. I feared these days. With all your struggles and your differences, the days of sending you off in the care of others and me not by your side to hold your hand and say it's ok. You are growing up and I don't know what your future brings but I am so proud of you for where you are. 

You amaze me everyday. I saw you kick your legs on the swing yesterday, that is such a big step! And today your teacher told me that you played in PE! It's the little things that make me proud. You will never have to win awards or come in first place to amaze me. I find amazement in the things that you are getting better at, the button that you couldn't work yesterday but today you got it. The letters that I found you wrote on a piece of paper all by yourself, and the shoes that you put on and got them on the right feet. 

You are a miracle and you will accomplish great things. 

I am so proud of you. 

Lucas birth til Kindergarten in pictures-

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Comparing him

I want the very best for him and I want him to succeed in everything and to be like other kids his age.

I think that is the hardest part for me, He is not like other kids, but it so hard to not compare. It's frustrating to see classmates of his or friends' kids succeed in things way before my son. I feel like a bad parent or failure because my son can't tie his shoes, can't ride a bike, that he doesn't know his ABC's. And it's hard to explain to other parents when they ask, is he in kindergarten? how is school for him? how old is he? because you know they are asking to compare...

"No he hasn't started kindergarten, he wasn't ready and quite frankly, he isn't ready now. How is school for him?- great question, school is HARD, he can't concentrate, he can't sit still. His friends are writing notes, and reading.. he knows, he sees what others can do.. he knows what he can't. And it frustrates him, it saddens him. And he won't tell you, but he tells me...he is embarrassed for others to see his struggles." And it is not fair!!

He is 6 years old and has no idea what the world will bring. He has an imagination that soars and can build a 5 star building with any objects you give him. He will be my engineer, my architect. But honestly he wants to be a doctor. He always has since his baby brother was sick. I can remember the day I found out, I walked into his pre k classroom to find his drawing of himself that said "I want to be a doctor to make my brother better"

That is the quality that makes him special. His heart is far bigger than his classmates, he excels in loving others. No it doesn't matter that he is 6 and doesn't know his alphabet, or how to write words or how to read. He will get there, he will learn all the things that his classmates know. What matters is that he will love everyone, he will know that everyone has different challenges they face but that we are all special.

I am learning to not compare him, which is hard but because I know what and why he is special and I know that he isn't like everyone else and will never be like anyone else.. because he is him and he is perfect.

Updated Us... very long overdue

 

 I am a stay at home mom to two very special boys, have been married to my husband for 10 years this November. Our family has gone through a lot these past couple of years with our boys and things are still coming into perspective. This blog is just a little glimpse into our everyday lives raising 2 special needs boys and also helping bring awareness to many rare disorders and very special kids.
Now about us…

Thing 1 (Lucas)- is a new 6 year old going on 18, who knows everything and always has to have the last word. He has been diagnosed with ADHD combined type, oral and developmental dyspraxia, fine motor and gross motor delays, phonological processing disorder, dyslexia, dysgraphia and receives speech, OT and PT.
He was born at 32 weeks via emergency c-section, he was in distress, having the cord wrapped around his neck preventing blood supply to his brain. We are very lucky to have him, he would not have made it full term and we are very grateful for our doctors for finding out.
Thing 1 is very smart, very creative, and his imagination is far greater than I could imagine. He is truly one of a kind.

 Thing 2 (Zach)- is our 4 year old love muffin, he is a momma’s boy to every extent. He spent a lot of his early years in and out of hospitals trying to survive. He has been through feeding tubes, central lines, iv nutrition, special formulas, tests, tests and more tests, and more surgeries than I can list. But through it all, he remained a strong willed, happy little boy who loves Superman.
No one really knows a diagnosis for him, we know he has Eosiniphillic Esophagitis, food allergies, and some autonomic dysfunctions (mild- mainly sensitive to heat and flushing when over stimulated)

 

For those that have followed our story from day one- thank you from the bottom of our hearts believing in us and keeping us in your prayers. We have made it, our boys are doing good, our family is good, and the past is behind us. Our boys are thriving and growing.

Through all of the crazy mess over the past year we have kept our faith in God and knew he would bring us through and we will continue to walk the path he has for us.