One of Those Days

Today was one of those days that left me wondering at God's generosity and goodness.  How could He have decided I was deserving of this precious girl?  Why me?

We arrived at the hospital early this morning to prepare for Angie's 15th laser treatment for her port-wine birthmark.  I was apprehensive because Angie has become increasingly aware of her "polka dots" as she calls her appearance after the pulsed-dye laser treatments.  She talked about the process with each of the staff members that visited her, and she told them, "My mom says I am a rock star!".  That doesn't even begin to describe her.  She amazes me.

Look at her puppy dog jammies.  Pretty adorable, aren't they?

Angie told her doctor that she was excited for her polka dots and she wanted to "get going on the ride", meaning the trip back to the treatment room.  I was questioned more than once about my decision to forgo a pre-med to help Angie relax.  Were they kidding?  She couldn't be more relaxed!  Here she is when they came to get her:

The doctor decided to "turn up" the laser today, making it stronger and increasing its effectiveness.  As if hundreds of lasers shooting her skin wasn't traumatic enough.  Consequently, Angie was given some morphine as she came out of the anesthesia to take the edge off of the pain.  And some ibuprofen.  And some tylenol.  That is how we roll, when they "turn it up".  True to form, though, Angie was ready to go home less than an hour later after she came out of the fog, stating, "Thank you for rocking me when I cried after my polka dots, Mom".  She just blesses me, over and over.  Every day.

Most of us would call it a day at that point.  Angie, though, went on to insist on macaroni and cheese for lunch and followed her laser treatment with a stop at the pediatrician's office to check the healing of her ruptured eardrum.  In the office, she joked with Dr. Copeland and showed him her dance moves.  She told him, "I am on Spring Break, whoop-whoop!" (insert dance moves here).  Truly, she amazes me with her courage and her unstoppable humor and grace.

Now, finally, she is resting.  I can't help but look back on the day with reverence and awe.  What a privilege to be in this angel's presence every single day as she impacts the world around her.  I will never get tired of hearing how brave and strong she, as I did today, and as I do time and time again.  Thank you, Lord, for trusting me with your child.

The Story of a Boy

I will try to keep this short but I couldn't let today go by without telling the story of Levi.  Thirteen years ago today, a tiny baby was born weeks too soon in a chaotic, unsettled series of events.  Our family hoped he would join us and 3 days later our hope was made a reality.  I will never forget the day he was delivered to us in a snowstorm, wearing only a t-shirt and a diaper.  I was in love.

Our baby boy was born trembling uncontrollably and uncomfortable in his skin.  The lights and sounds of the world were an assault to his system.  He couldn't eat or sleep as other babies did and this continued for over 6 months, eventually requiring serious medical interventions.  To be truthful, it continues on some level today.  Over the years he was slapped with an alphabet soup of diagnoses but none of them should define him, they simply help the professionals understand what might or might not help him.  Pretty worthless, actually.

Since the day that we welcomed Levi into our family there have been highs and lows and they have been extreme.  We dug into our parenting reserves and often we came up empty.  And yet, there was joy.  Knowing what I know today, I would do it all over again.  Levi has made me into who I am.  Because of him, I know that I can withstand the most excruciating of tests and I will not be broken.  I have learned to advocate and to not give up when I am told NO.  I have learned the true meaning of unconditional love and that love is an action, not a feeling.  And most importantly, I have learned what it feels like to have a child take up permanent residence in my heart, regardless of his physical location.  I am a better person for knowing and loving him.

We never would have guessed that Levi would eventually be made whole by a set of circumstances that require him to live outside our home.  Of course we didn't.  What is important is that HE IS.  I am anxious for the day when he can be home again, if that day comes, but for now, it is enough to know that we have come full circle and it feels like a victory.

Happy birthday, my precious son.  We love you more than you know.

Weekend Fun

We took the kids to Great Wolf Lodge this weekend.  I think most of the rest of the world took their kids too.  We had a fun, crazy, busy weekend and it was wonderful to be there together.  Toby picked Levi up in Portland on Friday so he could join us to celebrate his and Josh's birthday.

Have you been to the Great Wolf Lodge?  If you have, you know that it can cause extreme sensory overload for even a person with nerves of steel.  The boys were old enough to do their own thing and Angie was asleep by 7 on Saturday night.  Guess what time Toby and I went bed?  I think it was 7:10.  We both came down with a cold/flu/sinus bug last week so we were grateful for an early night.

Angie LOVED the waterpark, although she was quite nervous about being knocked down.  When I was away-Toby sent me to the spa:)-Toby took her down a ride in a raft with the boys. Not something I would have done, but he is a FUN parent!

On Sunday morning, I took Levi and Angie down to Starbucks.  We waited in line with about 50 other exhausted families.  Angie was antsy and Levi kept her occupied while we waited.  When we
reached the front, I asked Levi to take Angie to the side to wait for me.  The woman behind me tapped my shoulder.  She said, "I have been watching your family and your son is so good with her.  He is such a good brother".  You know what, she is so right.  Levi is a kind, caring,wonderful child.  How nice when someone else notices.  The woman told me that her daughter has Down syndrome and she hopes that her older son will someday be as good with her.  Oh, my heart!

This weekend meant a lot to me.  I forgot to say that there was a large Down Syndrome group at the lodge this weekend and it was heartwarming to see other families raising children with special needs enjoying a typical family activity.  I already knew, but I was impacted by how much they were just like any other family.  Like my family.

It was so nice for all of us to be together this weekend.  Even though it was crazy and exhausting, we were a family, and that is all that matters.

The Change

I have been noticing a change in Miss Angie lately.  She is growing up.  All of a sudden, she has a maturity and composure about her that is new.  I read a quote today that said, "She quietly expected great things to happen to her, and no doubt that is one of the reasons why they did."  I think that sums her up perfectly.

Today was Hat Day at school as part of the celebration of Sr. Suess' birthday.  I would say she nailed it:

Sometimes I forget how hard simple tasks can be for Angie.  Things that others take for granted like getting into a chair, getting onto the school bus or in and out of a car, writing, learning, or sleeping through the night.  All of these things take so much effort for our girl.  And the reason I forget this is because she does not complain.  Ever.  She takes her lot in life in stride and she never says, "I wish I could"...........anything.

I wish I could say the same about myself, but instead I am all too happy to have a pity party when life does not deliver what I think I deserve.  You too?  It is hard not to be discouraged, isn't it?  To be honest, I don't know how she does it.  It is easy to say, "She has never known anything else", but really?  I think I would still be frustrated and angry most of the day if I had to work as hard as she does.

This little girl is my hero.  Without her in my life, I think I would be stuck in my pity party indefinitely.  Instead, I have a living breathing miracle to remind me that NOTHING is impossible.  She never gives up.  Every day I wake up and thank God for another day with this precious child.  Before I go, I want to share a video I took the other day.  It is the perfect example of the joy that is bursting from Miss Angie's little body.  I have watched it a hundred times already.  Hope you like it too.......

Finally, peace

Finally, we have peace. We met with Levi's treatment team yesterday and now we KNOW.  We did make the right decision in moving him to the placement he is in.

Levi is absolutely thriving in his home and in school.  The purpose of our meeting was to develop an Individual Support Plan (ISP) which is similar to an IEP but it addresses life skills and daily activities instead of educational services.  Levi's treatment staff TOTALLY gets him and we are so thankful for that.  Even more importantly, they truly care about him.  Per the plan that was developed yesterday, Levi will get weekly counseling. He will be taken to the public library (he is an avid reader) twice a week, he will work with animals (either at the humane society or he will participate in horse therapy) twice a week, and he will get to go to a skate park twice a week.  He is thriving in school and he is forming relationships with the other boys in his home.  He has made new friends at school and he is actively participating in making sure he keeps up with his homework.  All of this is SO ENCOURAGING.

What more could we ask for?  Our preference would be for Levi to live at home and prosper as he is currently.  Unfortunately, we do not live in a county that can meet his needs.  So, we have changed our expectations and we are grateful for the services Levi is receiving in the Albertina Kerr program.  After all, this is not about us, it is about helping him to be successful.

To come to this peace we have had to adjust our expectations.  Levi's therapist has told us that some kids never achieve the skills needed to live in a family setting.  She was not predicting this for Levi but it was a necessary reality check for us.  Our long-term goal is to bring our boy home, but the overreaching goal is to help him thrive, however that happens.

We will take each day as it comes. The process of helping Levi will undoubtedly be slower than we would hope.  That is unavoidable.  For now, we have a peaceful home and we have an improved relationship with our son in the absence of the chaos that overshadowed our life at home.  Life is complicated, isn't it?  Parenting is not what we thought it would be, but we do not regret our choices for a single moment. Yes, it is complicated.

Parenting with permission

In case you wondered about our unique parenting experience, this is what it feels like: parenting with permission.  Let me explain......

We have so many adults, professionals, and agencies involved in our children's lives that it feels like we have to get permission to parent our children.  If we want to take Levi out to lunch, we have to ask first and then we have to tell someone what time we will return him to his home.  We were not listed as contacts at his school until an agency representative added us.  We attend meeting after meeting where other people tell us what needs to happen in Levi's life.  We consult specialist upon specialist to get help and each time we are on the receiving end of the relationship.  He is in the care of others more than 95% of the time.  Our private lives are laid bare time after time and without doing so we cannot get our son the help he needs.  It can be incredibly intrusive and invasive on a personal level.

Then there is Angie.  Although she is ours in our hearts and souls, she is technically still a ward of the state.  Because of this, we can do NOTHING without permission.  We now can get her hair cut, but that is virtually the only decision we can make without state approval.  Vacations must be approved.  Overnights must be approved.  Caregivers must be approved.  Educational plans must be approved.  Medical treatments definitely must be approved. You get the idea.  Besides the fact that she is in foster care, she is also involved in a multitude of programs and services.  IEP meetings involve a minimum of 6 people, usually many more.  She has a total of 7 specialists that she visits on a regular rotation.  We have quarterly monitoring visits with our caseworker from Developmental Disability Services which involve examining our extensive documentation with a fine-toothed comb.  Every time I turn around, I must answer to someone about my parenting of this precious child.

Don't get me wrong, we are grateful for the support we have received from the people in our children's lives.  We could not continue parenting without it.  Sometimes, though, I dream about a life without the looking glass that we are under.  What would it be like to have a family crisis that you could deal with as a family without including outsiders?  To plan and complete a family vacation without permission?  To attend a medical appointment without reporting on it afterwards?  Not to attend a court hearing every six months and hope you are found worthy to continue parenting the child who is "yours" in your heart?

Many days, I don't think about it.  But, sometimes, it makes me want to scream.  My kids have enough challenges already that I could easily pull the covers up and refuse to leave my bed most days.  The extra scrutiny and supervision can sometimes seem like the last straw for me.  I will never give up, though. My special angels are way too important.  And remember, I "chose" this life, as well-meaning community members like to remind me sometimes.  Really, though, my children have captured my heart and I will not give up advocating them because it is hard.  I guess I just needed to vent tonight.  Thank you for listening:)

1-2-3

Last week, Angie had three medical appointments in a row.  Wednesday, Thursday, and Friday.  I wrote already about her visit with Dr. Wray and the plan to move forward to treat her seizures.  On Thursday, she saw a specialist about her shoulder and he determined that she needs an MRI and a referral to a new specialist that can address possible joint issues.

On Friday, Angie was diagnosed with mild hearing loss.  There are a couple of ways to process this information. We can say, "What's a little hearing deficit in light of all of her other issues?" Or, "How can we manage one more thing on top of everything else we have learned recently?".  To be honest, I have not settled on one or the other but instead have wavered from one to the other all weekend long.  I do want to find out how her hearing loss is impacting her learning and possibly her behavior.  I found a simulator online that allows you to hear what someone with hearing loss hears.  Here is a link if you want to try it:

http://www.starkey.com/hearing-loss-simulator

It is pretty cool.  The audiologist said that Angie can hear what is said but the words can sound like she is underwater, especially if there is any noise in the room.

We have an annual IEP meeting for Angie this week and my thoughts are filled with ideas and hopes for her next year.  I feel like there are so many new unanswered questions that it is difficult to know what she needs though.  I am grateful for the kind, caring staff at our school.  They are always open to our ideas and willing to try new strategies to address our complicated little girl's needs. I hear stories of nightmarish IEP meetings and I am thankful not have those worries.

Toby and I celebrated Valentine's Day with a house full of boys since it was also Josh's 15th birthday.  We agreed to celebrate our special day later, when life settles down a bit:)  I know, funny, huh?