Through the Blur

"Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.”
― Debra Ginsberg

I love this quote.  Isn't it true?  I am really feeling it right now.  Our kids' needs are changing and growing all at once and I can barely keep up with myself.  The emotions are HUGE.

Two weeks into first grade, we need to make adjustments to Angie's routine.  It is not working.  Regardless of the gains she has made, Angie is going to need a lot of special instruction to be successful.  School is hard!  Have you noticed that the skills we learned in 3rd grade are now taught in 1st grade, or even Kindergarten?  Crazy!  As a parent, it is always hard to hear that your child is struggling.  I consider myself to be pretty knowledgeable as far as understanding special needs and learning disabilities.  I realize now, though, that it doesn't matter how much you know......it is the heart that feels the pain and there is no escaping.  I am really grieving right now for the challenges that will be ongoing for Angie and I feel helpless to take them away.

We will transition Levi from his group home to our home over the next month. The process must be carefully planned in order to be successful and it rests heavily on my heart.  We want to be assured that Levi will have all of the supports he needs to be successful and our family will have to make some changes for it to work.  There is so much to do.  This is a very personal, private matter so I will not share many details, but know this.........we want him home with us. 

We are relying heavily on our schools to collaborate with us to help our kids.  This is where I am most hopeful.  Our school staff is amazing.  I know that the town of Clatskanie has been the subject of some negative news stories lately but let me tell you that the shining star of our community is our schools. Toby and I are grateful for the encouragement and support we have received as we have advocated for our kids over the years.  I hear a lot of horror stories about terrible, contentious IEP meetings and families who cannot get what their children need at school.  That has never been our experience. We are confident that we will have productive meetings for both Angie and Levi and that their needs will be met at school.

In the midst of the storm, Toby and I went away to Sonoma last week.  We had the best time and we were truly able to leave our worries behind and enjoy the beauty of wine country with our friends, Kyle and Christin.  The wine was pretty good, too!

Please pray for our family as we move ahead to advocate for our kids.  It is a never-ending process that will exhaust even the most robust parent.  Honestly, I feel weak and unprepared but I know that God is by my side and He will help me along.  Without my faith, I would throw in the towel here and now.  With faith, I will move forward, one step at a time.

Feeling It All

Someone recently told me that all of their feelings were coming out so strong.  They were actually describing their newly-developed potential to cry at any given moment, which had become a bit concerning to them.  I do not have the same potential, at least I don't think so, but this weekend I experienced something close....... so many feelings.

Toby and I attended two weddings last weekend.  There is nothing like a wedding to make a person feel a little weepy, right?  The first bride was a longtime employee of Fultano's who is near and dear to our hearts.  She has moved on to a new job and started a family now and it was a joy to see her married and happy.  The second bride was precious Mackenzie, who has been Jordan's best friend for forever and a day.  Sweet Mackenzie practically grew up in our home because she and Jordan were inseparable.  She has overcome a serious illness, given birth to a precious son, and has shown infinite grace throughout her challenges.  Last weekend, she married her best friend, little Roman's father, David.

My feelings were overwhelming as I watched these young couples commit their lives to one another.  So much hope and promise!!!  But also, I thought of the struggles that were sure to come as the years go by and how they could grow closer as they overcame the challenges.  I have learned to appreciate the growth that comes from being in the hard places together.  It some ways, it is just as important as the joy that comes on easy days.  What a gift these couples have opened.  I am excited for them to begin the journey.

Another journey is beginning, too.  Kaeley and Tristan will meet their baby girl soon.  Kaeley is less than four weeks from her due date.  Last Sunday, I attended her baby shower and the feelings arrived in full force! She is one of the most beautiful expectant moms.  All of the memories of my own pregnancy came again and I was overwhelmed.  I remembered how, being a first-time mom, I was scared to death by the responsibility of caring for my newborn baby.  We learned together over the days and years and eventually my joy overrode the fear. Oh, the joy that baby girl brought me!

I can't wait for Kaeley to experience motherhood.  There is no experience to match the blessing of the birth of a baby.  She will be forever changed. Her heart will grow to wrap around her little girl and she will protect her little one with amazing ferocity.

So much hope and love poured into one weekend.  I guess maybe I am getting to that stage in life when I become a weepy old woman.  I can't help it though.  The next generation is coming and I am both excited and terrified to see what comes next.  Congratulations to Mary and Zach, Mackenzie and David, and Kaeley and Tristan.  Let the adventure begin!

This Girl

This happened today.......first grade.  Now, we have been over this before but it is near and dear in my mind today.  This child was not supposed to LIVE.  And look at her:

This girl is rocking first grade.  I know when you read my words and see the pictures it is hard to imagine the peril that this little girl's life was in but let me remind you that officials connected with Oregon State DHS wanted to enact a Do Not Recussitate order.  Would you allow this for a child who clearly has a lifetime of hope ahead?  Of course not.

You know the story, Angie had life-saving surgery which required the entire left hemisphere of her brain to be removed. We fought the fight and look at her today! This girl is in first grade and today she nailed it!

Miss Angie is a survivor of the very best kind.  She doesn't even think about it. She figures her life is the same as everyone else's and she does not expect special treatment.  She embraces her life simply because it is hers.   What an example for the rest of us.

I don't know your struggles.  You probably don't know all of mine, either.  Still, we can embrace the life we have and not look back at our challenges.  Why Not?  Have ever noticed your car?  The rearview mirror is tiny and the front window is HUGE.  This is really important because we need to focus on what is ahead and what happened before is miniscule in comparison.

If Angie can do it, we can too, right?  Make no mistake, Angie has been told about her past.  She knows the history, as well as she can understand.  She simply chooses to look and to move forward.  Every. Single. Day.  What a precious lesson for all of us, if we choose it.