Saturday, April 28, 2012

Updates, thoughts, challenges, victories...

Wow I haven't had time to write in so long. Well, at least not for pleasure. In the past year to two years since my last post our family has gone through a whirlwind of changes.

Change 1: I am a full time student. I went back to school in the fall full-time and am going to be walking in commencement ceremonies in May for North Idaho College with my A.S. in General Studies. I will then go through 8 weeks of an intimidating 8 credit summer semester to get my actual degree and graduate. I am then off to the Lewis and Clark State College Coeur d'Alene campus in the fall full-time to finish in two years my bachelors in social work.

Change 2: We have just gotten an accepted offer on a house and will be moving in hopefully the next 30 days. We have been sharing housing and expenses with my parents for almost three years now and our 5 person family has been living in 2 bedrooms and 1 bathroom with 950 ish square feet.  We are excited and also a little sad.  Multi-generational housing can be a tremendous blessing and strength.   We have been so privileged to have such amazing support in my parents and the help with everyday life will be missed.   It will also mean a huge amount of changes in our children's lives. My children like many, thrive on consistency, and hate change. Unlike other children, my babies usually have substantial reactions to even normal changes in routine. We are bracing for impact and planning for extra supports even now.

Change 3: We are all older.... Some days I feel like I am 60 years old and decrepit and other days I am still fighting the fact I am now 29 and the thirties are coming and I still feel 24ish !  However for all of us with an increase in age has come growth, maturity, and well more challenges!

       Christian: He is our little professor. I am pretty sure he might be smarter than me in a year or two. He is doing really well for the most part. We have seen him rise to the challenge of first grade this year in a way we didn't even dream of. He still has his struggles but he is reading at the top of his class and excels in academics.  The exception to that being handwriting.  He is learning to have empathy and compassion. Christian has developed a passion for God and wanting to in his own words "be what his name means... a follower of Christ"  I am in awe of how much he care about others relationships with God. It comes out in funny ways sometimes but he truly wants others to know Jesus.  I blessed and surprised by him almost daily.  He brings great joy to our lives and our life will never be boring. He still struggles with many things related to Aspergers but he is truly unique and a gift from God.

        Chloe: My baby girl.  Not any more she just turned 5 years old this month. She is a ball of emotions and energy.  She feels life in every way.  Her emotions are like a wild horse. Some days she is in control of that horse, and other days she is along for the ride. She has been doing well in many areas this last year.  We are in a bit of a rough patch with anxiety and the upcoming months will be hard for her. She struggles with change and we will need to work hard to help her feel secure and safe in the months to come. She also has lived up to her name though... Chloe has blossomed. From where she was 5 years ago an overstimulated delayed meth affected infant to a beautiful, passionate, and compassionate young girl. She is extremely bright and she loves to help and spend time with me. God truly gave us an amazing daughter. She is capable of greatness and I know with God's help we can help her exceed expectations and thrive.
        Josiah: Little man has changed the most in two years. He has gone from a stone faced, flat affect child to larger than life in every way.  He has navigated multiple surgeries, feeding tubes, hospitalizations, therapies, and more. He has made huge strides in every area but there is much more to still be done.  We are still unsure of what all of his challenges are going to be and we are concerned about the potential of FAS  Fetal Alcohol Syndrome or ARND  Alcohol Related Neurodevelopmental Disorder.  Just the thought of that being the ultimate diagnosis grieves my heart and soul. He wants to make good choices so badly but impulse control is one of his biggest challenges. He is so funny and engaging and he wants to please.  He just struggles with knowing how to do it. I see pieces of the sweetest heart in him. Some days he blows my mind with what he says and does. Other days he blows my mind but not in a good way. It is challenging for him to control his behavior and temper. We struggle to find any discipline that works right now.  My heart aches for him. I am praying that we can find someone to guide us and help us to help him succeed. We have not found that yet but we are looking.  We are looking for answers, looking for tools, looking for a way to help him.

      This is why I have decided to write again.  I believe our children and our story can help others. We do not know what the future holds for any of us. I know that God has a plan.  God does not give us more than He can help us handle.

       I feel some days that we have been given an impossible task.  To parent these babies that have been given to us is no small feat and I feel woefully inadequate most days. Today is one of those days.  My heart aches for my little J-funk. Deep in my soul I ache for him. I want to do something, anything to help him. To make it so he is not so frustrated every day. I am scared and worried and full of questions. Today I have no answers. Tomorrow will probably be the same. I may never have the answers I want. I pray that we will have the wisdom and strength that we need to do the job that God has given us.

At a conference today I learned many things. One of the things I loved was to leave the past and future alone and stay in the present.

   "My child has a disability and needs my help today to be successful. "  

Yesterday and tomorrow are not the point.

I need to do the best I can to help my child today. God has the rest covered.

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