Looking Forward

A few months ago, I wrote this post about Levi returning home:

http://miracleshappen527.blogspot.com/2018/01/starting-over.html

Reading it tonight brings it all back.  I was terrified that Levi would not be accepted at school and in the community.  I wanted so badly for him to have a smooth transition and to find his place among his peers.  I have waited but I think it is safe to say that is exactly what has happened.  He is truly home.

I have been feeling so grateful.  I am grateful for the love and acceptance Levi has received from friends, family, and caring community members.  I am grateful that barely a day goes by without someone asking me how he is doing.  I am grateful for a family that is whole again and the peace and relief that comes with that knowledge.  

Life is uncertain and that fact can be terrifying if you let it overcome you.  We have been dealt unwelcome surprises and disappointments over the years, and there is no guarantee that we will not have more to come.  I am working hard to appreciate the present and to look toward the future.  We have worked hard for this.  Our family has proven itself to be strong and we will weather whatever comes next as we have everything else-together.  Thank you, my friends, for your unwavering support.  You will never know how much it means.

Keeping It Real

     Toby and I have been struggling lately to keep up with all of the appointments necessary for two kids with extra needs.  Particularly Angela, who has had medical or dental appointments in Portland once or twice per week for the past month or longer.  The trip to Portland ends up taking most of a day each time, and I am so grateful that Toby is self-employed and has a schedule that usually allows him to take Angela to her appointments.  They both really enjoy their time together, and to be honest, I get a little jealous that it can't be me.  It is basically a party on wheels-the two of them cackling and joking the entire time.  They always come home with stories.

     We are fortunate, Toby and I.  We have been blessed with the resources to care for these children. They have added so much to our lives.  We have learned more about children with special needs than we ever thought there was to know, and we have had amazing people supporting our endeavor to make their lives as full as possible, whom we may not have met otherwise.  Our other children have reaped the benefits of developing empathy, patience, and compassion at a young age.  We do not regret jumping in with both feet, having faith that it would all work out as we raised the children we fell in love with.

     In keeping with my commitment to being honest on this blog, I want to share the other side of the story......it is HARD.  Toby and I had our biological children at a young age, planning that we would retire early and have unlimited time together.  Not.  The reality we traded that for is that almost every day Angela expresses her disappointment that I am her mom, screams and slams her door on multiple occasions, and is unable to perform many functions of self-care without help.  She "hates" me often, even though I know it is her frustration talking.  She is a full-time job.  We are no longer young parents and we are tired.

     Do you know what always happens, though, when I become discouraged?  God sends me a special sign that I did not misunderstand the calling and this is the life that was intended for me.  He never disappoints and today I received such a sign.  Today, I learned of a scholarship application in which a beautiful young lady in Josh's senior class cited Angela's influence as the driving force behind her desire to be a pediatric nurse.  Wow.  She has allowed me to share the following excerpt:

 My passion for wanting to help kids comes from a little girl that lives in my community named Angela. Angela has had more hospital visits in her lifetime than anyone should ever have to endure and she is only eight years old. This little girl continues to amaze everyone in her life with her ability to stay strong and push through all of the medical challenges she faces. She currently only has half her brain because she had a disease in her brain that caused her to have many seizures that if they hadn’t done something drastic quickly, the disease would have ended up killing her. This little girl still continues to thrive every single day of her life and because of her strength and the amount of love she still has to offer people it has pushed me towards helping kids/ families in need like her and the amazing family she has.

     She will be an outstanding nurse.  The young woman never walks by Angela in the community without stopping to talk with her and to make her feel special.  She is a gift to our world and she will probably never truly know how much her words mean to a mom who worries about the future and struggles to keep a smile on the hard days.  It is all worth it, and today I was given a reminder.

Sixteen

Sixteen years.  Sixteen years ago, a baby traveled to us from Seattle in a crazy snowstorm.  He came to us wearing nothing but a diaper and a onesie and he was the smallest baby we had ever seen.  We loved him instantly and completely.  Some of you have heard and know our story, but it needs to be repeated today.........on the eve of his sixteenth birthday.

This crazy little boy came with a load of burdens that were not his to bear.  But he had to overcome them anyway.  The first weeks and months were some of the hardest days we have had but I honestly believe that we are better people for pushing through it.  We have learned so much.  So about that.........

I would not trade this parenting experience for anything.  There have been days when I felt that all of my skills had been exhausted and were far from adequate.  The calls from school, meltdowns, and obstacles.  Many tears and much frustration.  But most of all, overwhelming joy.

Levi is loving, caring, and thoughtful.  Above all, he has always wanted to do the right thing, even when his actions have indicated otherwise.  He adores his siblings and WORSHIPS his brother.  He is funny, smart, engaging, and empathetic.  His peers seek him out because he is fun, kind and hilarious.

The past few years have been hard. I am not going to lie.  While we would never choose to have our family separated, we have had to make the excruciating choice to do so.  We never wanted that, but it was the best possible decision for our family.  Sometimes the hardest choice is also the best one.  Another lesson.

Fast forward to today.......sixteen years after our frozen newborn baby joined the family.  Levi has been back at home for over two months.  For over two months, he has made good choices, practiced respect and humility, engaged with positive influences, and he has worked hard to prove his new and improved self.  Our community has welcomed him back with kindness and we are grateful, as small towns tend to have long memories.

So here we are.  This goofy guy will be sixteen years old tomorrow.  He is a gift and a lesson.  A blessing and a joy.  He is a warrior and he has persevered through incredible adversity.  Most of all, though, he is strong.  I am so proud of his growth and his strength.  His journey has not been easy but he has not given up.  I have a feeling that sixteen will be the best year yet.

Starting Over

Today, our family is starting over.  After 18 months away, Levi is home and our family is complete.  I write this post with caution, as I want to be very clear.  As you read, please know this....we want our family to be home together, and we always have.  This move was carefully considered and meticulously planned.

We are excited to have Levi back at home, where he belongs.  We had the best day.  After picking Levi up, we went shopping together, ate lunch together, and then came home to a quiet evening together.  It felt "normal", which is a rare occurrence for us.  The missing piece of the puzzle is in place.

I know that there are those who will question our decision to move Levi home again.  He has struggled at home in the past and we have had some pretty humbling experiences together.  To those, I would say that every child deserves and needs a family.  That is what brought him into our home in the first place.  The past 18 months were not wasted and Levi has excelled in his home and school environments.  During those months, we were no less of a family, but elements of "regular" family activities were different.  We still evaluated school progress and spent weekends and vacations together.

Levi has grown and changed and he is ready to begin again in Clatskanie. It is my hope that his peers and adults alike will give him that chance.  His courage and resilience are unparalleled.  My son is a warrior, who never asked for or deserved the insults to him that happened before he was born, and who is determined to be victorious over them.

Toby and I are scared.  In fact, we are terrified.  Not that Levi will fail, or that we will.  No, we are apprehensive about our community's ability to show him the grace and compassion he deserves.  Small towns are funny that way sometimes.  It is easier to have a new start when you can assume some level of anonymity, but Levi will not have that benefit.

Bringing Levi home today is no less terrifying than the day he arrived in our home, weighing only 5 pounds, in the middle of a snowstorm.  That little bundle came with a huge batch of needs, and we felt much the same as we do today.  Excited for the future, anxious about our abilities, proud of Josh and his love for his sibling, and worried for our precious new son.  Today is a new beginning and our family is, once again, complete.

The Dread

I have been preparing myself for Angela's IEP meeting later this week.  Moms of children with special needs commiserate about the stress induced by IEP meetings, and we prop each other up with words of encouragement and bravery in the days before.  Some parents I know compare the meetings to a third world war, or a root canal.  It can be that intense.  Unfortunately, many school districts do not prioritize the needs of the child in IEP planning, and district budgets and resources determine the outcome.  I am proud to say that we have never experienced this, despite living in a small school district with limited resources.

No, I am not anxious about the prospect of having to wrestle the services Angela needs to learn from district officials, but there is something else haunting my thoughts-The Dread.  The Dread stems from knowing that when Angela's present levels are shared, I will grieve what is missing.  As much as I prepare myself, it is painful to hear that my girl is years behind her peers in almost every academic domain.  She will never catch up.  The very kind teachers and therapists will emphasize the gains she has made and the amazing new skills she is learning.  They will praise her wonderful social skills and that she is "a friend to everyone".  And I will be immobilized by the milestones she has not met.

This is not my first rodeo and I have attempted to console myself.  I tell myself that I am fortunate that I do not have the misplaced guilt experienced by some biological parents, who believe they may have contributed to their child's disability with their genetics.  I tell myself, "We chose this" and "We knew what we were taking on".  I remind myself that we have educated ourselves about Sturge-Weber syndrome and recovery from hemispherectomy surgery, and we have provided Angela with numerous opportunities and supports to maximize her potential based on what we have learned.  We are doing our job.  None of this makes a bit of difference.

I am overwhelmingly proud and grateful for Angela's successes.  She is an outstanding individual who has risen above adversity and is thriving and growing beyond our expectations.  I am not embarrassed or ashamed by her delays, nor do I wish for a different child.  I do, however, wish for her sake that she could just once achieve an academic award at the school assembly, participate in a spelling bee, or play on a sports team with her friends.  I want her to experience play dates, sleepovers, and being a winner in a game.  I want her to be included in private jokes and to be chosen first for a team during PE.  I want the same things that every parent wants.

The Dread is inevitable, but I will not break down from the weight of it.  I will bear it and I will prepare others who come behind me for the inevitable challenges of even the most amenable IEP meetings, hoping to somehow make it bearable for them too.

Things are Changing

Things are changing for this family.  My kids started their Christmas break last Friday and that is always a difficult adjustment for us.  Children with special needs can struggle with transitions and change and ours are certainly no different.  Angela has an especially hard time when we adjust our schedule during a school vacation.  Tantrums, meltdowns, frustration, and more.  Did I mention that change is HARD?  During school vacations, everything is hard!

We bought the Elf on the Shelf for the first time this year.  I have resisted until now, but Angela BEGGED for it, and I gave in.  Every night, we have to come up with new mischief for our elf, and it actually has been more fun than we expected.  The most fun is that Ang really believes the Elf is wandering the house at night causing trouble.  This week, on the eve of Toby's required (by his age) colonoscopy, our elf "pooped" chocolate chips-one of Angela's favorites so far.  A really nice benefit of having a child with special needs......they tend to "believe" much longer than their peers.

Another change on the horizon is that Levi will be moving back to our home in Clatskanie next month.  So many feelings.  We cannot wait to have our son home. He is excelling in his current program and he has grown and matured beyond our expectations.  He is ready, and we are too.  That said, there is lots of apprehension about his return to a school that has not been a good fit for him in the past.  We are grateful for the school staff and their efforts to help us plan strategies to help him be successful.  They want this to work, and so do we.  Time will tell and that is all I can say.  This is the next step in the journey and I have to trust God to chart the course.

In another resignation to change on the horizon, we have scheduled a visit to Perry Tech in Yakima to help Josh begin the application process to attend school there next year.  How can I let him go?  This child, who taught us that love and family go far beyond genetics, and that love, at first sight, does exist.  He will leave our home next year and I am not sure how I will cope.  Toby and I were head over heels for him from the moment he entered our home, with a goofy smile and unwavering attachment to us from day one.  It was as if HE adopted US, and he has brought us so much joy.  How can the time have passed so fast?  Those of you who have had children graduate high school and move on know that it never gets any easier, no matter how many times you do it.

I have to admit that I have never been very good at change.  I try to put on a happy face, but change is HARD for me.  As I approach these major changes, my only option is to pray.  This is not something I can do alone.  Thank you, my friends, for listening and supporting me through this crazy life!

Rocking the Research

Since Angela's surgery, we have been anxious to participate in research that will drive innovation and advancement for children with special needs.  Angela has been included in several medical and educational research projects over the past few years and we are always looking for new opportunities.

A few weeks ago, I was contacted by a research group that was preparing for a project authorized by a major designer clothing company.  The company is considering a line of adaptive clothing for children and adults with disabilities.  I responded and was interviewed for the program and we were accepted!!  I have always believed strongly that children with special needs should have access to the same fashion as other children, but children who require orthotics, or have physical limitations often have fewer clothing options available to them.  This is frustrating for me and I am always on the lookout for cute, yet practical clothes for Miss Angela.

Two weeks ago, our Tommy Hilfiger package arrived and I almost cried.  Really.  The clothes are THAT good.  They are cute and do not look "special".  The closures have magnets sewn into the fabric instead of buttons or snaps, and the (skinny) jeans have the magnets in the seam so the pants open to fit easily over Angela's leg brace.  The long-sleeved t-shirt has the same type of closure on the neckline so she can get it on easily with one hand.  I am posting pictures of her cuteness below, even though you can't see the magnets.  Isn't she adorable?

There is a dress, too, but I have not captured it in a photo yet.  I guess I really raved about how much I love the clothes because I was asked to send a video to share my thoughts with Tommy.  I am pretty sure we are besties now, don't you think? But seriously, I am so honored that we can be included in this project.  I am going to be furiously advocating for an adaptive clothing line to be available for all.  I will keep you posted......