Merry Christmas!!!

Merry Christmas! Thank you for all your love and support for Leah! We are so lucky to have each and every one of you a part of her life. Words can't express the gratitude we have as Leah has received a very generous Christmas gift from an anonymous person. We feel very blessed! Much love to all of you! 

A neat Christmas surprise!

Leah received a package in the mail full of Christmas cards from high school kids. It was such a neat surprise and of course it made me cry! We don't know any of these teenagers and they took the time to reach out and show love. Leah also received some gifts from some high school kids from Olympus who come to her school and help in her classroom. These kids are truly special. I went to her school last week for a Christmas party and I met these awesome kids. The love they have for her is truly overwhelming. They told me that she and the other students have changed their lives for the better. My eyes were full of tears. One girl made her a rice bag to help keep her warm and a guy gave her a Frozen snuggie blanket and explained that he wanted to give her a blanket that would cover her arms when she is in her wheelchair. I watched these teenagers love and care for her. It was so beautiful to watch! These moments of love make our Christmas extra special. 

Adding a third day at school/Meet with Genetic Doctor!

 She is also doing so great at school. They want to add a third day during the week after the Christmas break. I think this is a great idea because she has progressed so much since she has been in school. I think we made such a good choice with her school. Also, we met with a genetic doctor a couple weeks ago. He and other doctors have been doing Leah's genetic testing. They found a few things but needed to do testing on our families to confirm those specific mutations. Our families gathered and they all got cheek swabs done. I love them all for doing that for us. He also said they need to do Leah's full genome (DNA) testing. He said that he needed funding to continue. We said we are ready to do fundraising or whatever needed he became uncomfortable and said he cannot ask us for money. He said he will find the funding through some foundations. Hopefully we can move on to the next level of testing soon. I am learning to have great patience 

A sibling to a child with special needs.

One of my close friends sent this to me. I literally cried my eyes out! This is so beautifully written. I love my Lauryn, Trent & Tyler. They have become the most beautiful kids because of our little Leah. 

Hey there,

I heard you’re the sibling to a child with special needs, 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. Let me explain…

I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they’re taking care of your sibling, possibly bringing him or her to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not. You see the love your parents have for your special sibling, and it’s being embedded into your heart. You see the patience they exhibit when caring for him or her, and it’s being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it’s being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you’re 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 is a struggle. I know you have those moments where your heart stings with jealousy, where you’re worried sick over your sibling. I know you have those moments 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 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 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 you’re there for them no matter what. The bond you have is indescribable. You’re their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand.  And I tell you what, we’re so extremely jealous.

Did you know your parents watch you and your sibling’s 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 and hold hands during tests or doctor visits. Your parents recognize every time you perch yourself on the counter to help prep medicines or bring them a diaper, a syringe or whatever else they need. 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 heartache and you know what’s 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 percent 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 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’re going to change lives for the better… all because you were the sibling of a child with special needs. Rock on, my brave friend.

All my love,

The momma of a child like you and your special sibling

Let go of what is!

Let go of what is!

I don't know maybe it only makes sense to me. I have been thinking and I am very grateful that Leah has been doing pretty good lately. When I struggle to find answers and wondering why Leah has to suffer and why she got this life. I am so grateful for what comes to me...from God... let it all go! Let go of your feelings of sadness, let go of what life I thought Leah was going to have, let go of the why's. Be okay with what it is... even though I don't understand any of it. My answer is to be okay with what it is. When I get these answers and have a feeling of total peace. I feel better than I have ever felt in my entire life.

I strive every day to let go of what is.

I am so blessed!

I hope everyone had a great Thanksgiving with their family and friends.

I am so blessed! I have a little angel as my companion every single day. She doesn't leave my side almost 24/7. I tell her every day "I didn't know I was going to be given an angel". Why me I ask myself? How did I deserve to care for this precious little girl. I tell her every day "thank you for coming to me...thank you for choosing me". We have a connection that's undescribable. It's a heavenly connection, I feel it every day. I know others feel it too. People can't get enough of her- they crave her presence. Many people say "I love the way Leah looks at you".

Leah has a very wise soul. I learn from her every day. We don't need to communicate with each other-we already understand each other. I am constantly amazed by her strength. I have learned that life is precious and beautiful. I am so grateful that this little girl has taught me that all the little problems that I thought were problems really aren't problems at all. I appreciate all the small things in life. All my relationships with the people in my life have changed for the better. My life has forever changed because of her. Even though the days are hard and she still doesn't have a diagnosis there is one thing that will never be taken away from us and that is...the love I have for her!
I love you Leah!