Farewell 2016

I know that we still have a couple of weeks left in 2016 but I am ready to say good-bye.  2016 has not been my favorite and I am done with it.  There has been political unrest, too much violence, personal disappointments, family illness, and frustrating unfinished business.  Farewell 2016, you can go now.

This time of year always makes me a little bit nostalgic and this year is the same I guess, despite the disappointments.  I am not unable to appreciate the blessings that have been bestowed on me and my family.  We are strong despite the challenges of the past year and we have not been toppled by the hard days.  I am proud of my children and their responses to discouraging situations.  My sons and daughters are resilient and they depend on one another for strength.  This makes me proud and fills my heart.  2016 has not broken us.

I have some specific hopes and dreams for 2017.  Angie's wish to be adopted will be realized and she will legally become our daughter after spending over 3100 days in foster care.  My grandson, Ezra, will be healthy and happy after a treacherous and unpredictable first year of life.  The monstrous remodeling project that has hijacked our Christmas will be completed and our home will be dust-free at last.  My parents health will be stable.  Our businesses will prosper.  My boys will continue to develop into the amazing young men they are becoming and my three adult daughters would be happy and fulfilled.  Too much to ask?

I have few other hopes too........that our community could find healing and we could learn to accept and forgive one another.  That children in foster care would always have a loving alternative home where they are safe and that the justice system would do its job and punish those who inflict pain on others.  That we could all set our political views aside and realize we are more alike than we are different.

Okay, I am asking for a lot, but I have learned that if you do not ask the answer is always NO.  I am going to dream big for 2017 and see what happens.  Farewell 2016.

There is a memory that I have not been able to get out of my mind so I have determined that I must be meant to share it.  When Angie was almost two years old she had her tonsils and adenoids removed and for some unexplained reason she became really sick the next day.  We expected to go home from the hospital on the morning following the procedure and the next thing we knew, the emergency response team was being called to Angie's room.  She was in severe respiratory distress and was immediately moved to the intensive care unit.  She would stay there for almost a month.

While Angie was sick, we were given daily updates on her condition each morning.  Day after day we received bad news and the doctors (who were amazing) continued to switch up her treatment plan to try to bring her back to us.  Angie had severe pneumonia and her lungs had collapsed due to the infection.  During this time, Angie was heavily sedated and her breathing was completely managed by machines.  She was barely there.

One day, I mistakenly received a text message that Toby meant to send to one of our close friends that said, "It does not look good for her future and I don't think Kara knows".  I knew.  But how do you accept that you may not bring your child home from the hospital?  No one wants to admit that.

Eventually, Angie fought back and she began to get better.  Just when we thought the worst was over, she developed a hospital-borne infection in her blood due to a central line that was placed in her groin  to deliver her medications.  She was also physically dependent on pain medications and she had to be slowly weaned to avoid withdrawals before she could go home.  Again, we waited.  During this time, I spent most of my days in a hospital chair holding my girl, after three long weeks when I could only pull my chair up next to her bed and hold her hand.  I had hours upon hours to do nothing but think.

For some reason these long days and my thoughts during that time have remained firmly ingrained in my memory.  As I rocked my baby girl, I tried to imagine her life in the years ahead and I couldn't.  I had no idea if or how she would survive.  We were still dealing with catastrophic seizures that did not respond to medication.  Her neurologist did not believe she was a candidate for surgery and the powers that be at DHS believed she should have a Do Not Resuscitate order developed to prevent life-saving measures when the next major seizure occurred.  They did not believe she could have a quality life.  The days were long and I treasured the moments that I believed could be some of the last I would have with Angie.  I was scared, but I had an overwhelming feeling that her story was not over.

I will never forget those days,  They are so vivid in my mind.  I am convinced that her story was not over but I could not imagine the next chapter.  Now, I know that she has been the recipient of a miracle.  There is no doubt in my mind.

After Angie's lifesaving surgery, we were thrilled by her amazing recovery.  Last summer, when we attended the 2016 Hemispherectomy Conference, we realized that her recovery has just begun.  The research and information that we have now has opened doors for her that are limitless.  Angie's school has taken the information to develop a program for her that completely meets her needs.  Because of the information we have gained from the sponsors, the Brain Recovery Project, we have started new therapies that have literally changed Angie's life.

Tomorrow is Giving Tuesday.  It is a day that is meant to highlight organizations and to raise money for worthy causes.  I ask you, will you give?  Our family, and many like ours, have benefited from the activities of the BRP and there is much more to be done.   Please consider a gift on Angie's behalf, to honor her miracle and to continue the important work that still need to be done to her children with catastrophic epilepsy.  We would be so grateful.

We are preparing for Angie's adoption in full force now.  Yesterday, my photographer friend captured some family pictures that will celebrate the formal addition of Angie to the Harris family.  It was one of the best days I can remember in a very long time.  Every single member of our family together in one place.  Children and Grandchildren laughing and loving each other. In a beautiful barn. Then, dinner together afterwards.

As you might imagine, this is a really emotional time for me.  We were recently given Angie's DHS file, which included documentation of every hospital admission, every diagnosis, every seizure, near-death experiences, and the recommendation for a DNR order for our precious child.  The file included documentation of the fight we waged against the order.  I forced myself to read every word and feel all of the feelings.  And I cried.  But what I realized was this........she has transformed our family.  We will never again be the family that existed before Angie.

Because Angie has been in foster care for over eight years, we have had regular appointments in the county courtroom and before the Citizen Review Board.  We have had so many people involved in our lives and all have known every detail of Angie's history.  Something that Toby and I have heard repeatedly (and strongly disagree with) is that we have "saved her".  No.  We have not saved her.  In fact, the opposite is true.  Angie Rae soon-to-be Harris has saved our family.  Saved us from becoming complacent and discontent.  Saved us from taking our daily lives for granted.  And saved us from a life without miracles.

Make no mistake, this child has had miracle after miracle bestowed on her as she has cheated death and overcome extreme challenges.  We have become the recipients of God's grace as we have prayed for her to stay with us forever.  We are blessed and better for her presence.

Toby and I were not seeking to add another child to our family when Angie came into our home.   We thought our family was complete with the five children we had.  But God knew better.  He did not want to leave us without bestowing his grace and mercy on us through Angie and all that she has taught us.  He knew we needed the hope and the wonder that would come with caring for her.

We are so grateful. Every. Single. Day.  We look forward to sharing Angie's official adoption date with you very, very soon.

Adoption is not for Wimps

This adoption stuff is not for wimps.  Let me be clear, this is not our first rodeo.  We have already completed two successful adoptions. So why does this one feel so different?

Maybe because Angie has been in our home for eight years, six months and 5 days .  That is 3105 days.  The plan for Angie was changed from foster care to adoption in June 2015 and we were told that the adoption process would take 6-8 months.  Seventeen months later we are still striving to get this thing done.  Each step of the way we are told by the state that they have a certain amount of time to complete the current task.  If it is 30 days, they do it on day 29 or even after.  Time after time we have completed the tasks given to us, only to wait months for the state to complete theirs.and then insist that everything is "right on track".  I am about ready to drive down to Salem and cause a ruckus~spoken like a true hick from the sticks.

Angie desperately wants to be adopted and she fully understands what that means.  She is done with foster care and so are we.  Recently, I was asked to speak to a group of potential foster and adoptive parents about what the experience is like and I had to decline.  I have spoken to groups many times over the years, but I just can't do it anymore.  How I can recommend becoming involved in a system that causes heartbreak for children and families?  I am not just referring to our case, but countless others I am aware of.  Children returned to nasty living situations time and time again.  Parents given repeated chances to hurt and neglect their children.  Children taken from the only parents they have ever known for years to be placed with relatives they have never met. The system is broken.  

The holidays and the end of 2016 are ahead.  We want so badly to make Angie a Harris forever before 2017.  I still have a thread of hope for that, but I am increasingly disillusioned by a system and people who say that permanency is a priority but act as if they have better things to do. Thank you for listening to this rant tonight as I just needed to be heard.  Updates to come.....

Busy Girl

It has been a while since I posted, mostly because I am not sure how to put this update into words........everything feels more "normal" for us right now than it has for a long time.  I know, that is kind of a weird thing to say but we are just doing the things other families do without thinking,and it feels so good.

Miss Angie is completely rocking her school year.  Her brain is in extreme learning mode and her progress just blows me away.  Today she did 6 pages of math!!!  This week, she began to read and understand plurals, and there is so much more.  She has a new awareness of the world around her.

Doing her job at school:

We went to a great pumpkin patch last weekend.  Finally, a break in the rain.  We had such an amazing day together.  Hay rides, kettle corn, pumpkin bowling, shooting pumpkins and apples out of cannons.  Again, just "normal" family stuff:

Tonight, I took Angie and a friend to the Fall Carnival at school.  I love to attend community events with Angie.  She has such a zest for life and she reacts as if every experience is the very best one ever.  She reminds me to appreciate the little things.  Every. Single. Day.

There is adoption news and I don't want to jinx it but I will say that we will be announcing our finalization date very soon.  I hope I did not just jinx it.  Oh no!! Let me say this, though.....we will be celebrating with a huge event and I expect every single person who has traveled this journey with us to attend.  No exceptions.  We wouldn't have it any other way.

We had an IEP meeting for Angie today.  As I listened to her team's comments and the data that has collected about her progress I was completely overwhelmed.  There seems to be no explanation for the explosion of learning that Angie is experiencing.  Except, there is:

Angie has a dedicated, creative team of people working with her every single day.  They "get" how she learns and they have adjusted their teaching accordingly.  It is working.  I have said this before but it bears repeating.  At the beginning of this school year, six weeks ago, Angie had no consistent sight words.  Today, she is READING!!!  Color words, number words, high frequency words, nouns, verbs, you name it.  She is reading it.

We shared information about the effects of hemispherectomy on education and they listened.  The results speak for themselves.  And she just continues to surprise us.  I am in contact with many parents of children with special needs and I know this is not the norm.  Many families struggle to get the services their children need.  I want all families to have what is needed because their children deserve it.

I cannot write about Angie's progress without mentioning her sessions of the Anat Baniel Method.  I still do not completely understand why it works but I am 100% convinced that it does.  She is a different child since starting the ABM treatments.  We are planning another series of session for her in early November.

The bottom line is that we are thrilled and amazed with the child that Angie is becoming.  She is a mystery and a wonder and she has blessed our lives beyond measure.  I can't wait to see her progress continue and to watch her continue to soar......

Breathing

Tonight, I realized how precious Angie's breathing is to me.  The fact that she is breathing is no random fact.  It is an important reminder of the weight and the depth of her miracle.

So many nights, we sat by her bed in the hospital and listened to machines breathe for her.  We stood in the corner of the room while doctors inserted a breathing tube because the seizures wracking her body were ruthless and were stealing her ability to breathe on her own.  We prayed that she would breathe on her own again afterwards and we feared that she would not.  On more than one occasion, we sat by her side in an ambulance and prayed she would breathe long enough to get to the hospital.  At one point we received a phone call asking us to hurry back to the hospital to see Angie before doctors intubated her during a serious illness they feared she would not survive.  That time, she did not breathe on her own for 21 days and then she came back to us.  Breathing is really important and I think we take it for granted.  We don't know not to.

Not anymore.  Some of you may have thought the title of the blog, "Life After a Miracle" is a little bit dramatic, but I would argue that it is not.  Angie is very much the recipient of a miracle, maybe more than one.  How else can we explain the months between the time we were told, "Her next seizure may be her last", and the day she went into surgery without one seizure occurring?  When she was having intractable seizures every two to three weeks before that?  During those months we were told she could not have surgery due to her bilateral disease.  DHS determined that a Do Not Resuscitate order was a better alternative to surgery.  Doctors performed test after test to determine if she truly could survive and thrive with only the right hemisphere of her brain.  And months went by.  A miracle, I tell you.  We fought for her life and we won, but it was more than that.

God never wastes a miracle and this one will not be any different.  Angie is using her second chance at life to teach the world around her.  She is showing us that there is no "impossible" and that no challenge is insurmountable.  She models goodness and grace for those around her and she is a living example of what happens when you ignore what people say you can't do.  She definitely isn't perfect.  She is also stubborn, sassy, and she can swear like a sailor.  She is feisty and naughty and she hates math.   I wouldn't have it any other way.

Tonight, as I write, she is sleeping beside me and her breathing is music to my ears.  I wouldn't trade this miracle for anything.  I could listen to it all night long.