....thank you Frayda and Jewish Caring Network for the memories.
Tuesday, December 30, 2014
....thank you Frayda and Jewish Caring Network for the memories.
Sunday, December 28, 2014
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 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, 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 leaning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person.
|A Ravens Fan early on...not by choice....|
|Always using each other for something....trying to figure out a way to get into trouble.|
|Happy 1st birthday!|
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.
|Who knows what they are doing there...but it was a photo op!|
|Happy Halloween...Mickey and Minnie.|
|Has always had an "old" soul...maybe this was just another way he was showing it.|
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. 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 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 doctors 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 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.
|Happy 11th birthday!|
|Making funny faces.|
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.
The momma of a child like you and your special sibling
Friday, December 26, 2014
Tuesday, December 23, 2014
Monday, December 22, 2014
Sunday, December 21, 2014
Saturday, December 20, 2014
Thursday, December 18, 2014
Wednesday, December 17, 2014
Tuesday, December 16, 2014
Monday, December 15, 2014
Saturday, December 13, 2014
Friday, December 12, 2014
We all made it to hear Becca play in her Winter Concert!
Thursday, December 11, 2014
Wednesday, December 10, 2014
Tuesday, December 9, 2014
So a little bit ago, I was laying with Ian. We were talking about our day and how they were. He said he did awesome in school today and I told him work was OK. Ian says "Can I ask you something?" "Sure" I said. "Did you ever have a boyfriend?" he asked. "Yes, why are you asking?" He said, "I don't know". So we keep talking about other things. Brian then comes in the room asking what are we talking about. I told him what Ian asked me. Ian looks at Brian smiling and asks him "Have you ever had a girlfriend?" He says, "yes". Ian then looks at him and says "What were their names?" So Brian answers him and Ian starts to laugh. Next he asks me some names, I tell him and Ian laughs. We are not sure why he is laughing but it is good to see him laugh. These are the crazy wonderful conversations we will remember.
Sunday, December 7, 2014
Sitting here thinking back to my high school reunion last weekend, going out with my sister-in-law, niece and Becca to the mall the other night and talking to a friend this afternoon, I realized I have lost a part of myself over the years. I am sure, Brian has as well...Becca has probably had a hard time figuring out who she is...at a really hard time in a pre-teens life. I would think given our situation this is "normal".
Leaving the house is getting harder for Ian, we don't go out much as a family or at all. One of us is always home with Ian. We are going to start working on him using his in-line humidifier more often to see if we can get him out a little more. Getting out will do all of us some good. When you are in the house most of the time and you do get out, you feel strange. I remember when the twins were first born and I came home, Brian and I had to go to Target, I felt as if everyone was staring at me. It was as if people knew I was on bed rest and just got out, as well as that my babies were in the NICU. Just like riding a bike, you remember how to do it. As my outings went on, it did get a little easier to be out.
When talking with others, you want to talk about other things and you try, very hard, but then you realize, it has become your life, it has become you. As much as you try to be more, to be about other things, you aren't. It has become you, it starts to define you....you are the caregiver of a terminally ill child and your life has become that. It was hard once I realized this because over the years I have tried not to become this, to not lose myself. I have also realized this was out of my control, no matter what we would have done, it would not have made a difference. This has become our life. I know this will change, however, I don't like what needs to happen in order for the change to occur....in time will I become something else and how will that feel.
For now, we will continue with our lives as they are, taking care of each other in whatever manner we need to.
Saturday, December 6, 2014
Ian telling us he did not want to go to the hospital anymore and was OK going to Heaven threw us for a loop. It pretty much knocked us down...hard.
Brian and I have had many conversations over the past few weeks with each other. We have also spoken with other parents who have lost a child, members on Ian's Gilchrist team, Becca and Ian. Trying to decide what our next steps could be while keeping Ian's wishes in mind as well as our wishes for him, Becca and ourselves as his journey continues has not been easy. These conversations have brought tears, laughter, smiles, as well as more tough decisions.
Medically Ian is stable. The changes we are seeing are with his outlook and enjoyment of things. Ian being OK going to Heaven and not wanting to go to the hospital is a major shift. The smiles and laughter are not there as much, oh we still get them, just not like we used to. There are times when you can see the exhaustion on his face.
So what to do? We have decided we are going to try to care for him at home if/when he gets sick again. We have been given some more tricks for when this happens along with the knowledge that his Gilchrist nurse will be over to help us assess the situation and make decisions on what to do...continue treating at home or go to the hospital ....we will have to continue to take it one day, one minute, one second at a time.
"For now, remember this: When you feel low on smiles and you feel it’s over before you’ve had a chance to begin, dig deep and remember your purpose. Laugh loud, live in the moment and dream big. And most of all, remember you matter in this world."