Our story - A mother's heart exposed

Have you ever felt so hopeless that you have to try and look through a situation (I mean literally through, like X-ray vision), to hopefully catch a glimpse of something deeper on the other side that is trying to surface. Something of great value. Something that reaches beyond your own tangible hopes. A level of such clarity that you are certain only comes from God during the darkest moments in life. Or to put it differently, have you tried to look into the eyes of your own portrait and tried to ask the "you" in the portrait...."what were your dreams?".

We are there now. Looking in the eyes of our wedding portrait. What were the dreams of two hopeful people, wanting a fresh lease on life? Coming out of difficult loss and looking to the horizon, trusting God with our future. Looking to each other for love and compassion. Finally finding that one person who would urge us on during these dark moments. Always hopeful and encouraging. Yet, very innocent to the turn of events that will soon shake our world. Still very much committed and holding tightly to each other when we hear one bit of bad news after another. What a very different life we lead now, than our dreams had looked like 4 short years ago. Wondering all the while if God had forgotten our plea for help. Trusting His Word, but also afraid that His Will would allow even more suffering in the near future.

Reality came with a crash at the news that our baby son, Aidan, had Autism. Many don't realize the impact this had on my heart. The truth is, I waited for over 15 years to conceive my 2nd child and my biggest fear was that they could possibly be Autistic (since it runs in families and I have a 1/2 brother who has Autism). Before we saw any signs of his condition, I was already pregnant with our daughter Kaelynn. When Aidan was 2 and Kaelynn was only 10 months old, our home became a therapy zoo, with 20+ hours of therapy every week. I have counted, on average, 8-10 different people in my house, any given week. During this time we also had our two oldest sons living here (Jake, who was 16 at the time, and Alex who was 12 lived with us for the first 3 years). Living in a two bedroom, with 4 children and intense therapy...was enough to drive me mad. Just 2 months after this therapy started, we got the surprising news, we were going to have another baby. Prayers for a larger house increased and so did our stress level. Screaming is how these kids communicate and there was no rhyme or reason to the tantrums, fits, spells...whatever you call them. I know the difference because I had had another child who developed normally, and this was NOT normal! Watching Aidan was so painful because he really appeared to be in a panic and sometimes it was in the middle of the night. These type of things really leaves you isolated because going out to public restaurants, parks, library etc just doesn't work. As Kaelynn started getting older we watched her carefully. She seemed to be developing normally. But, the ugliest part of this disorder is it can appear out of the blue around age 2...as your child will start to lose skills they once had. Right now, we aren't sure but Kaelynn is undergoing therapy for much of the same things Aidan did at this age. Baby Kylie was born in October 2011. Immediately after her birth, Aidan had to transfer from his county program to our local school district. They have no flexibility, so at age 3 in Nov 2011, Aidan began a transition to a special preschool program. Starting in March, Kaelynn started her assessment, and now we have double the amount of people coming and going in this 900 square ft place. Since all this started we have a never ending challenge of keeping kids (who have no danger compass) safe, fed (food justs gets thrown around), clean (sensory issues don't allow for water, brushing, scrubbing etc); bungee cords, stroller straps or high chairs, baby gates, locks on doors and cabinets are no match for children who don't respond to requests or discipline or even their names or simple commands like STOP!! Very few people are able to watch our children so breaking away just for a couple of hours to recharge is impossible. Since Aidan was born, he has consistently had sleep issues...and I don't mean the kid has a hard time sleeping....he has a hard time not running around the house at 2am and bashing his body into walls...hence the sensory issues. Kaelynn has now learned this behavior so we have played musical beds/bedroom since they were born. You can imagine the stress level in a house that hasn't truly slept in 3+ years. Our rooms are basically on top of each other and we have no bath tub to bathe our kids in a safe setting...man, this story just keeps getting better and better!! One night when Kyle was praying about all of this I just started laughing hysterically...it sounded like a made up story.

Was this our dream? No. It has become the hardest part of our life. Yes, partly because of the stress and extra work load, but mostly because my heart aches for my babies and the struggles they have to face. Will they make friends? I don't know. Will they ever speak? I'm told maybe not. Tears are forming now as I write this very sad reality. We pray for healing and we still love our kids where they are at but going against the "mantra" of parents who support the "accept" theory, I have to say...I hate Autism! I hate what it's done to my son. I hate what its done to the rest of my family. There is no way around this feeling. Do I accept my child? Yes. I love him as much as all the rest, and because of his needs might even provide a little more affection and tenderness. But I still hate that we can't have meaningful conversation. He doesn't want to be close to me. He doesn't acknowledge us as his family. I don't get to teach him in a way we both understand. Everything is choppy and rigid. Nothing flows socially. I tell you, it's sucks!

When I spoke earlier about looking through a situation, this is one that I long to get my arms around. I'm trying to find that deep meaning of why?? It's a scary place to go, because its there that really deep hurt is exposed. I have been there before...but never on behalf of my children. I don't want to dig deep on something that will reveal my child's pain to me. The reason I am writing this...is that I need to air out my emotions. I spend most days in this house with 3 diaper babies who scream all day. I'm writing because one day I'd like to look back and see where I've come from. I'm writing because I hope someone will read this that feels this same agony and I can help them be okay with "hating autism", and to not feel guilty about it. So much of what you hear on the Internet is about accepting. I understand the concept of why you might want to accept it...but I also don't see what is wrong with stating the obvious...Autism steals from families. Can I still find joy in my days?? Of course! I am making the most of a bad situation and Jesus is helping me, or more likely carrying me. I am lost without Him and He knows how I feel.

If you find it in your heart to pray for our family, please do...as we have a most uncertain future and many more challenges ahead. With no cure and such a wide spectrum, the outcome for Aidan and Kaelynn is totally and completely in Gods hands.