Monday, August 24, 2015

Because Of You

Today at 6:55am marked 11 years since you made your grand entrance into the world and changed our lives forever. I never could have been prepared for the journey that began all those years ago. I did what all moms do when they are pregnant. I imagined what you would look like. Would you have blond hair like Daddy or brown hair like Mommy? Would your eyes be blue? Would you be lucky enough to get Daddy's dimples? And I thought about who you would become. What sport you would play or musical instrument you would master. Never ending questions circled my mind as I dreamt of all the possibilities. Little did I know that your life would have more of an impact on my life and the world than I could have imagined. 


Many parents think about what they can do to help mold their child into the person they want them to be. You, my sweet one, haven't given me that opportunity. What you have given me is so much more. You have been gradually turning me into a person I can be proud of. Slowly weeding out my bad qualities. Bringing to the surface the ugly parts of myself and forcing me to have to change them. Has it been pretty? No. Growing up and maturing rarely is. In fact it is easier to stay stagnant. To do the same things that you have always done because that is where you are comfortable. But you pushed me out of my comfort zone. 



When you regressed into Autism, I fell back on an old habit of comfort to try to cope with the pain. It was an old friend that would show up whenever I didn't know how to handle my feelings. Were it not for you, I probably wouldn't have said goodbye to that old friend for good over 7.5 years ago. Because of you my sweet son, I had to find healthy ways to deal with heartache. I became stronger and healthier than ever before. I learned to be open with your Daddy and talk through the hurt instead of stuffing it into a bottle. We grew closer, and I have been able to experience a deeper form of trust and intimacy than I thought possible. Because of you. 


Because of you, I am physically healthier than I have ever been. When you were small, you weren't happy unless we were moving. So I moved. And moved. And moved some more. At one point hiking 21 miles a week on your favorite steep hiking trail with you in the jogger stroller or on my back. You were my coach, pointing your precious little fingers forward to keep me walking and running when I wanted to quit. 70 lbs and a half-marathon later, I found myself in the best shape of my life. And though I am not as fit as I was, I have been able to keep the weight off due to the huge diet changes your unique body forced us to make for all of us. And I am forever indebted to you my son. 



Because of you, I find value in what really matters. I find success in the small things that so many people let pass by without a second glance. You have taught me empathy, patience, and unconditional love. You have given me a fighting spirit I never had before. You have opened my eyes to the world of people with disabilities. No longer do I act as though they don't exist just to make me feel more comfortable. You have made me more human. And I am not the only one you have impacted in the 9 years since you graced the earth with your presence. 



Because of you, your Dad took charge of his health so that he could be around longer to care for you. He made tough, selfless choices because you gave him a reason to care about himself. He became a harder worker just so he could provide for you what you need to succeed. 


Because of you, your brother will never know what it is like to have not gotten the right help at the right time. You paved the way for James to get what he needed much quicker than you did because you taught me how to be an advocate. Your struggles have brought James success and I hope one day he will understand how much you have impacted his triumphs.


And finally, I don't know a single family member or friend of ours that you have not changed. You have shown all of them what a truly spectacular boy you are, and that Autism brings some amazing challenges and even more amazing accomplishments. They all share the joy of seeing the boy you have become and look forward to celebrating what you master next. Even Great Grandma started going to a local school on Fridays and reading books to a class of Autistic children because of you. And now through this blog. You cannot begin to fathom how far your reach will become. 


Happy Birthday my sweet Bugaboo. You deserve to be celebrated. You are an amazing boy with so much to give to the world. I can't wait to see where your life will take you. You surprise me everyday with the things that you have learned. Thank you for being so patient with me as I struggle to understand you. Forgive me for falling short so often. I am blessed to call you my son. 



My life has purpose. 

Because of you. 

Monday, August 17, 2015

Perspective

Life isn't fair.

It isn't.

I know that, but when bad things happen to people as amazing as the woman in this picture, it makes me question all over again.

Why?



I met Krista back in my college years when I was working as a counselor at a Christian camp. She was a friend of my roomate and came to visit. I was only in her presence for a couple of days, but I remember she was such a kind and wonderful girl who was a true joy to be around.

Krista went on to become a nurse, get married, and have a precious little boy. Then 6 months after the birth of her little miracle, she was told she had invasive metastatic breast cancer that has spread to her lymph nodes, liver, ovaries, spine, and pelvis.

Why God? Why?

She started writing a blog to share her journey with others.

http://trustinggodwithmyfuture.blogspot.com/

It is a painfully honest look into the day to day of what she has endured. I cried more than once reading about the struggles she was going through, all while trying to be the mother she wanted to be to her precious boy.

One of the hardest posts to read was when she went on a mini vacation for a couple days to write letters and record video of herself for her son so that he could have a piece of her during the key moments of his life. She made sure that if she couldn't be there, he would have a letter to read on every birthday, graduation, wedding day, etc.

She fought so hard. She wanted to beat this. She believed in God's healing. And though she had her angry moments where she asked God "why?", she never waivered in her trust in Him and His plan.

Today her battle ended and she ran into the arms of her Savior. She is whole again. Free. She was ready to go.....her body weary and unable to fight the cancer any longer.

She was 4 days shy of making it to her son's 3rd birthday. 

Why?!

I can't stop the tears from flowing as I write this. My prayers are for her family as they have to figure out a way to go on without her. I can't image the pain they are enduring in this moment.

To her husband and son, I pray that God will allow the wonderful memories of Krista to bring you joy in the days to come. That Matias will remember the sweet sound of his mama's voice and comfort of her touch. That he will know how hard she fought to stay with him as long as she could. I pray Xhevat will find strength to make it through the difficult moments where it hurts to breathe and you feel you can't take another step. God, give him the strength he needs to be both mom and dad to their precious little boy. 

God, be near them. Remind them of your constant presence even in the small moments.

You have left your footprint on this earth in so many ways Krista. You changed me and I barely got to know you. I can only imagine the impact you had on all who loved you.






Sunday, July 26, 2015

A Place to Belong

Finding a place to belong is one of the most important parts of this human journey, and probably one of the most devastating parts of our journey with Autism. 

From the time Andrew was very young, he didn't fit in anywhere. Not only with his typical peers, but his spectrum peers as well. He always seemed to be the one with the most struggles. Unable to adjust to any type of structured or unstructured program. Unable to handle things that others took for granted, like playing at the park, or attending birthday parties. He never seemed to be bothered by this, but Bryan and I felt our hearts break a little each time we experienced it. We felt the pain for him. 

Andrew is almost 11 years old, and this inability to fit in anywhere has not changed. He is growing up, but in many ways he is still a toddler in his mind. The older he gets, the wider the gap between him and his peers. And the less he fits in. 

When he was younger, there were more opportunities for him to be included with others. But as he gets closer to junior high age, the inclusion falls away, and he is left more alone than ever before. 

This became more true than ever today when we met with the special needs director at the new church we started attending a couple of months ago. We loved our old church, and they are one of the few out there that have a true special needs program for all. But our youngest son needed more peers to interact with than what our church could provide, so for his sake we looked elsewhere. This new church has a great pastoral staff, and great children's program for James. They have so many activities going all the time, and their budget is in the millions. 

They also advertise that they have a special needs program. But we found out very quickly that their special needs program doesn't meet the needs of any child that is not able to mainstream into a normal classroom. It doesn't provide care for children that have physical or mental disabilities.....mostly it seems they cater to kids with attention issues. They provide a buddy to be with them, but require them to be in a classroom of their peers. The director stated that she knew that this was a need, but that no parent had come forward before with a child that has needs as severe as Andrew. 

She asked no questions about him or his needs. She showed no interest in him at all. And when I tried to explain what kind of a child he was and what his limitations were, she interrupted me with excuses as to why they haven't started a program to serve families with loved ones like him. She went so far as to say that they never want to turn a family away, but that there are many churches in our area that already have programs in place to serve a child like ours. Which for the record is completely untrue.

It was a huge disappointment to say the least. 

I don't blame the director herself, but this is a huge church. A church that has missionaries all over the world and a church that makes it a point to help those less fortunate. But what of the people that live right in their neighborhood....in an area with the largest ratio of autistic children in California? These families need the ability to have a chance to be fed and grow in their faith with other believers. And that chance is rare when you have to take turns with your spouse attending church because your child is not able to be cared for in that environment.  Even more rare if you are a single parent. They have respite days for a date night, and meetings once a month for families to get together and talk about their kids with special needs, which is all awesome.....but that is the extent of what they provide. We need to be able to attend church and grow in our faith in the Lord....all the while knowing that our child is safely cared for just like the other kids.

We left church with an ache in our hearts. A sadness that only comes from feeling left out. Again.  That ache quickly turned to anger. Churches should make it a priority to serve the needs of families struggling with the care giving of a child or adult with disabilities so that they can enjoy a church service. It takes time, training, and resources, but so does having programs for typical children. 

I just wanted to be angry. To stop going there all together and find a place where our family could have our needs met. But those places are few and far between, and I have to think of other families our there now and in the future that need a church they can call home. 

So instead I offered to help them build a program to serve a broad range of kids with disabilities. I don't know what will come of it, but she seemed willing, and open, and wanting to meet the needs of other families out there that are just waiting for an opportunity like this. 

So instead of being angry that my kid has been left out of something, I will make an effort to change his circumstances. 

Anger gets you nowhere. But it can give you that boost of strength you need to make a difference. 

Here we go.

Tuesday, July 7, 2015

Grace

Last night was rough. 

Ok, I'll be honest, the last couple of months have been rough.

Drew has been really struggling ever since I had to go back into the work force, which is something that could not be foreseen or stopped. Life happens. Bryan sustained an injury so serious that he is unable to work for an unknown amount of time.

Drew has always had me around. From the moment his eyes opened in the morning to the moment they closed at night, I have always been the constant in his life. With all of the changes of therapists, schools, schedules, etc....he always knew that Mama would be there to help him ride the waves of uncertainty.

All of that changed on December 10th 2014. The day that I started working full time after 10+ years being a stay at home mom. 

Even though Dada has now taken on the stay at home parent role and is doing an excellent job (better than me as far as I am concerned), he is not me. And to Drew, this makes life very hard. He is sad. He is angry. He is insecure. 

I feel awful. 

I can't be there when he is having a hard day. I can't be there to stop him from hitting himself when he is upset. I can't be there to wipe his tears of sadness and frustration when he cannot say the words in his mind he so desperately wants to share.

I feel helpless at work when I know that he is struggling and I have to continue to do the things that need to get done here. I have to trust that he will be okay. That Bryan can handle it. I know he can. But the mommy part of me hurts that I can't comfort my child. I worry that he feels abandoned by me. He doesn't understand why things had to change. I hope someday he will be able to.

Last night.....really the last few months of nights off and on, Drew struggled to go to sleep. He is fighting sleep. Literally. He cries, and cries, and yells repeating whatever consoling words I say to him, and cries some more. He pees his bed as soon as I leave the room and his bedding has to be changed multiple times a night. We have tried everything we can think of the last couple of years to fix this behavior but nothing has helped. The other night he cried for 2 hours straight until he fell asleep due to pure exhaustion. I read to him, sang him songs, held him, wiped his tears, and told him "mama is here, mama's got you" over and over...but nothing consoles him. We have talked to doctors, done testing of all kinds, adjusted his sleep supplements, tried new things, tried old things, and nothing works.

Some nights I respond to this the way I should. With patience, love, consoling words, and more patience. Other nights when I am exhausted from my own busy day I respond to him with irritation, anger, frustration, and impatience. And then the guilt follows. I hate myself for not being able to control my reactions. I know in my mind that Drew can't help the way that he is. He is going through something and he is not wanting to have the problems he is having. He doesn't like not being able to sleep, or to cry so hard that he struggles to breathe. I know this. But sometimes I am weak. More often than I would like. 

After a long struggle to get him to sleep last night, I came out of the room and sat down with my phone. A message came to me over Facebook from an online friend that follows my blog and my boys. It took my breath away and brought tears to my eyes.

 It started with a question. "What do you do when things get really bad?"

She went on to describe difficulties with her daughter and the hardships she and her daughter face on a daily basis. She asked me how I cope, and stated her fear that she is not a strong enough mom for her daughter.

I wanted to have a brilliant answer for her. Something to encourage her about how I cope with things and something that will give her strength to get through another moment. 

But I didn't. My response was this.

"I am not strong enough. I wish I was. I try to be."

"Only God's grace sustains me. I feel guilty. I should have more patience. More strength. More endurance. I am so sorry. You are not alone. I wish I had good advice.....but I am in a broken state as well."

"I do the best I can and I feel it is never enough."

Sometimes it just has to be enough to know that you aren't alone in your struggles. That there are others out there that understand what you are going through and will support you just by listening and sharing in your struggles. 

Life is hard. It will probably always be. I just have to push on and continue battling with myself to be better for my son every single day. 

I'm gonna screw it up. 

A lot. 

But I will choose to keep trying and give myself grace along the way. 

And I hope you do the same.