Here's to all the MOMs....

The New Year has arrived and we are well into our way of finding out how our 2015 year will be.  At the end of every year I always look back and think what it consisted of....how many doctor appointments, therapies, hospital stays, surgeries, etc.  I am sometimes saddened that my child had a rough one, but then I smile because we made it another year.  I see all my other Facebook MOM (mommies of miracles) friends and think about how their year was and how they made it out....

These MOMs aren't like my typical Facebook friends.  These ladies have become a part of my family, albeit 95% of them I've never met in person.  Our children brought us together.  Our bond is strong because we live a life that no one else can possibly understand.  We fondly look at each other's pictures or statuses and give an encouraging word, praise their children's hard earned milestones, tell our experiences, or cry with them over some of the hardships of our children's lives.  This aspect of our lives is why Facebook has become so important, it is where our best friends are that we can't see in person.  Some MOMs have just been inducted into the club with their newly diagnosed child while others have been a MOM for many years....each MOM comes with her own experience and knowledge.  Knowing I have these women in my life, through the screen, helps me put one foot in front of the other to care for my miracle child the absolute best way I can.  So here's to you, my amazing mommy of miracle friends...

Here's to the MOM...who was just told that her sweet child has a rare disorder and will need constant care.  Her life is forever changed and she is needing support.

Here's to the MOM....who has a toddler who is developmentally delayed and hasn't reached milestones that most toddlers have.  Her hopes and dreams for her child remain in tact as she brings her child to therapies and is tirelessly working with him.

Here's to the MOM....who pushes that beautiful child in the bright blue wheelchair in and out of stores, hospitals, doctor offices, schools, parks, birthday parties, theaters.  She proudly shows her child the world and more importantly shows the world her child.

Here's to the MOM....who has a child with an invisible disorder and gets stares from strangers that judge her parenting skills.  She knows her child like the back of her hand and hopes that with enough exposure and compassion the public can see her child for the way he or she is.

Here's to the MOM....who was told that their child was born blind and would never see.  She never gives up hope that possibly the doctors were wrong.  Her life is a journey of glasses, canes, Braille, sensory integration, and overcoming stigmas.

Here's to the MOM....whose beautiful child has a disorder that will take their life.  The thought of losing her child is never far from her mind, yet she holds onto hope.  Her life is a constant state of when and holding onto her miracle for as long as she can.

Here's to the MOM....who is seen arguing with her miracle child's doctor about what her child needs.  She isn't afraid of a degree in medicine.  She only has one purpose in this life and that is getting her child the best medical care possible.

Here's to the MOM....who is learning to live this lifestyle after her healthy child was in an accident that has changed them forever.  Her heart breaks into a million pieces, but remains strong for her child.

Here's to the MOM....whose child has grown into an adult.  She knows all the ins and outs of this life dealing with special needs.  She is an valuable part of our community of MOMs and is so respected and looked up to.

Here's to the MOM....who lives in the hospital more than they do at home.  She has become great friends with the nurses, therapists, residents, custodians that work at the hospital.  She is an expert of hospital life and can pack a go back in 30 seconds flat.

Here's to the MOM....whose child with special needs has left this Earth and is now an angel.  Her arms physically ache to hold her child and to see their beautiful, sparkling eyes again.  She will forever be in our community because this was her way of  life too, and just because her child isn't with us anymore, SHE still is.  Her presence reminds us to hug our children tighter, cherish our days together, and to send her our love when she needs us.

2015 will most definitely have its ups and downs, as every year does, but this year as we endure our daily struggles and triumphs let us remember all the other MOMs out there.  Reach out to your fellow MOMs for advice and friendship and encouragement.  We are all in this together....rejoicing on a successful therapy session, being mentally and physically exhausted from an extra long hospital stay, or quietly savoring a special moment before bed holding your child where no words are needed to know and feel his or her sweet, pure love.

 

Dear sibling to a child with "specialties": Let me tell you why you're amazing....

Hey there little friend,

I heard you are the sibling to a child with "specialties" and I wanted to write you a letter explaining why you have a one up on life.  I know your life might seem hard or different from your friends, but trust me you most definitely will be more prepared for this life than anyone else walking around this big ole Earth.  Let me explain...

I heard that you deal with more than any child should, like having your parents spend a lot of time away from you.  You know they are taking care of your sibling, possibly bringing him or her to the doctor, maybe your sibling is admitted in the hospital often, they might be on the phone taking care of insurance business, or even physically caring for your sibling constantly.  I know my friend.  You see these happenings more often than not.  You see the love that your parents have for your special sibling and it is being embedded into your heart.  You see the patience they exhibit when caring for him or her and it is being buried into your soul.  You see that your parents never stop trying to get what your sibling needs and it is being ingrained into your mind.  You see your parents exhaust themselves making sure that your sibling and you are well taken care of and loved and you are learning from this.  You may not know it, but all of these "little" things are teaching you traits of how to be an amazing person.

I'm certain that being the sibling to a child with different needs than most is a struggle.  I know you have those moments where your heart stings with jealousy, where you are worried sick over your sibling, or when you get mad because you can't go to all the birthday parties you want to.  All of those times are totally understandable.  You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things that you have in your household that your friends don't.  How about all the cool equipment your sibling has? Huh?  I know you've climbed into that wheelchair or played with his super cool assistive technology toys!  How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body?   You get to experience a friendship that is like no other.  Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart.  They look at you with those beautiful eyes and know that you are there for them no matter what.  The bond you have is indescribable.  You are their sibling, their friend, and their protector.  Your sibling might not be able to speak verbally, but we both know that your hearts together carry on conversations that us adults could never possibly understand.  And I tell you what, we are so extremely jealous.

Did you know that your parents watch you and your siblings interactions on a daily basis and their heart literally wants to burst out of their body with pride and love?  They see everything you do for your brother or sister.  They notice when you walk by and give them a quick kiss, stroke their hair, or give them a hello.  Your mom and dad love to witness you sticking up for your special sibling, or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place, hold their hand during tests or doctor visits, or wipe their innocent little face.  Your parents recognize every time you perch yourself on the counter to help make medicines or bring them a diaper, a syringe, or whatever else they are calling out to you!  You do such a crazy amazing job helping your parents.  It surely takes a wonderful little boy or girl to do what you do on a daily basis.  I'm sure they tell you thank you, but sometimes if they don't just know THEY ARE BEYOND THANKFUL FOR YOU!

But most important of all, my dear one, the reason you are going to ROCK this life- you know true love, you know true heart ache, and you know what is truly important.  You have lived a life that takes a strong heart and a strong mind.  You will mature much faster than your schoolmates (don't be too hard on them), you'll exhibit compassion that astounds others, you'll know more about healthcare than 95% of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what!  When you were introduced to your sibling with complex needs for the very first time, that moment in time is pinned in the stars, for it was then that your destiny was determined.  You will be an awesome human being and you are going to change lives for the better....all because you were the sibling of a child with specialties.  Rock on my brave friend!

All my love,

the momma of a child like you and your special sibling