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.