Moving

When we moved into our home 5 years ago, I imagined Gabe growing up, playing ball in the backyard and riding bikes down the beautiful tree-lined streets.  Having taught in that same district, I knew the schools and was excited to send my children there.  I envisioned bringing home another baby or 2 to that house.  Our family would grow and thrive there.

Almost two years after we moved in, Isaac was born.  I knew he may not walk, but time would tell what he would do. I imagined that he would push his way up the stairs and it would work.  Time went on, and I saw, that while amazingly, Isaac would crawl down the stairs (with supervision), it was not a safe option.  And when he wanted to get to his room, the stairs were an obstacle, and only with the help of an adult, could he get to his room.  I realized, it wasn't fair.  He needed access to his room just as easily as Gabe could get there.  I realized, I lived in fear every nap time, because I was afraid he would crawl to the stairs and become a little too brave.  I knew we needed to move, even though I had fears of that change.  I knew, my dreams had to change.

And they did.  My dreams that we would find a house that worked for our whole family happened.  We found a wonderful, 1 story home, in a great neighborhood, 25 minutes from our old house.  One week ago, we moved from that beloved house and our dear neighbors.  Our neighbors saw Gabe grow into a little boy, they came to my aide 2 hours away when all within 48 hours Isaac was born, my grandmother died and Isaac had major surgery.  They have played with our children, they have seen the worst and the best of us.  They have been our friends. And leaving them was hard.

But amazing things have happened since we have moved...
Gabe and Isaac get to go to school together and ride the same bus.

Gabe has played non stop outside with wonderful new friends, and we have met many great families that we can tell will also be great friends to us.

Hila has started army crawling.

And Isaac has been able to get up in the morning, crawl out of bed and come out to the kitchen.  All by himself.  Just writing that brings tears to my eyes.

So tonight, I sit here with great gratitude for the memories that our old house holds, and the neighbors that will remain our lifelong friends.

Making the move was hard, but it also has come with great blessings.   I look forward to memories that will be made in our new accessible home and the new friends that we have met and will meet.

"Miracles start to happen when you give as much to your dreams as you do your fears." ~ unknown

Isaac's realization: I can't walk mama

Isaac is becoming strong; like strong as in, he will do a push-up into a tripod with his bum in the air strong.  He now climbs in and out of his bed.  And he doesn't crawl up on his belly.  It's all pushing his body up, bum first.  So needless to say, when we hold him and he wants to get away, it's a true struggle.  Physically, he is really toughening up.  Not that he wasn't before, but you can now, really see his little muscles in his arms.

He reminded me yesterday, that he is also still our tough guy in his views of his world.  And I have to admit, I am so grateful for his tough, no-nonsense perspective.  I'll share with you this little guy's perspective.



Yesterday, Isaac, Gabe, Hila and I were all playing in the boys room.  Gabe was reading, Hila was chewing and Isaac was climbing into his bed.  I'm not sure what sparked this conversation, but here it is...

Isaac-  "I can't walk mama...  I just pretend walk." (Which he stated very matter of factly).

Me- (Trying to think quickly and also trying to not over-do my answer). "Yes, but you do so many things good.  Like wheel, crawl, scoot, and talk."

Isaac- "yep.  I walk in my big wheels.  I stand too.. See"... (as he proceeds to push his bum in the air with his hands).


I hope that he always has this matter of fact view on life.  I hope that he sees that just because he doesn't do things like most of us, it doesn't mean he can't do them.  He just does them different or with different tools.  And I have even greater hope that the world sees that too.

Why I write

With recent "identity theft" from our friend's blog, I have been afraid to share this blog.  The last thing I want is for my writing to affect my child in a negative way.  From the beginning, the thoughts of protecting Isaac's privacy and rights have always lingered in the back of my mind.  I don't want to put him or any of my children in harms way.  I am usually trusting of the world and see it as a loving place, but then things happen, and I am reminded that I must not be naive to the dangers of the world and internet world.

Sadly, it's out there.  People do things that harm others.  It's not cool and it's downright scary.  That's why I have contemplated, "what is the best thing to do."  Do I privatize my blog and only have people I know, that I can send and email telling them that they can follow our story and continue to be prayer warriors and supporters of our little tough guy?  (Yes!  and a thank you is not enough to express my gratitude for my faithful followers). But what about the aunt that emailed me because her sister was having a baby with OEIS and wanted advice?  What about the mother with an older child that had never met another family with OEIS? (Who by the way had the same surgeon operating on our child!) And, what about the mother that has found out her child has these random set of birth defects.  The mother that has little hope, because she has been told her child could be in the hospital for months or a year.  Her child may never walk, be able to eat by mouth or urinate in a normal way?  What about that mother, who has been told she should abort her beloved child she has been carrying for 5 months.  She is lost and sad and confused.  She loves her child, but she has no face to give her hope.  She can only imagine sadness in her child.  How could she give life to a child that only faces adversity?

Let me tell you why.....because there is something much bigger in life than "being normal".  Isaac's story is about hope, but it is mostly about love.

Does this look like the face of a child without hope or joy in his life?  (Hardly, right?)  And let me tell you..... the doctors were right about some things and wrong about others; but the thing they couldn't tell me was this..... that he is happy.  That he has a cackle laugh that is contagious.  That he can charm you with his quick wit, yes, even at 2.  That he is bold and knows exactly what he wants.  That he is ornery as heck and enjoys it.  That he will tell you everyday you pick him up from school, "mommy, I missed you."  The doctors just can't predict how much love you will have for your child, no matter how long your hospital stay is.  No matter how many birth defects your child has and no matter how rare and unknown his health will be.

I remember being that mother.  Pregnant with her beloved child, without hope.  I was the mother scouring the internet at 2:00 am with my pregnant belly, moving through the motions and searching for an answer.  And you know what?  I found the answer, Isaac's diagnosis, even before the doctors could figure it out.  I found some blogs about children with OEIS.  And I saw their precious faces, their smiles of joy, and their families, that you could tell only had love for their child.  And it gave me exactly what I needed..... hope.  Hope that while I know it may not be an easy road, that our lives were not destined for isolation and grief.

There was a beautiful child waiting for us to welcome him and give him the extra love and care that he needed.  The internet can be a very scary place.  I don't even like to imagine the harm it can bring.  But it can also be a place of finding hope.  It can be a place to share stories and messages, so that we can make better decisions.  And so, with thought, prayer and perspective, I am keeping Isaac's blog public.  Because if I hide his inspiration to the world, then I am not allowing his disability to help others in need.  If I know this is how I can help share his story to help others, then I know his suffering will always give God glory.

So, with all that being said, please respect our blog, my children and all the families out there that put their lives out there for all to see.  It's not easy to share your life with the world, but sometimes, we know that sharing can help others.  Don't take that away.  Please respect all and take nothing from others stories, except hope, prayer and respect.

This time of year

The beginning of April will likely always mark a time of inner reflection for me.  The rainy skies dampen the earth and remind me of the tears that filled my pillow for the days and weeks that followed April 5, 2011.... The day of our revealing ultrasound.  That day, in just a single moment, in the words of a short phrase, my world forever changed.

While it is painful to revisit those memories, it is important.  It is through that pain of my journey that I am able to peel off the layers of ugly about myself.... judgement, prejudice, ignorance, anger, guilt, self-centeredness, fear....

Through time, tears, prayer, self-reflection, support of loved ones; I realized that God had a different plan than mine.  It didn't seem fair to me and I didn't understand why I couldn't just have my plan.  Hadn't I been obedient enough?  What had I done to deserve this?  I did not want His plan.  I wanted to run.  I wanted to run far from His plan.

But something stopped me from running.  It was larger than hope, larger than my faith in God.  No matter what I did to try to run, I couldn't.  This force was much greater than anything.

It was Love.  It was the love from everyone around us.  It was love from my husband. It was the love I knew of being a mother of Gabriel.   It was love for this baby boy within me.  I had loved him from the moment I felt we should have another child.  This child, Isaac Michael, was meant to be and I loved him.  I knew that I had to embrace his journey and follow God's will for him.  Isaacs's plan was no longer in my hands.... but now I know, it never was in my hands.

I have read countless blogs and books of other parents' journeys.... down syndrome, dwarfism, autism, spina bifida,  etc.  I can relate to each of them in some way.  Sometimes it is the thoughts of fear that we have as parents of children with special needs.  But most of the time, it is just about love.

I hope that the love from this blog, and other blogs, helps share with the world, that different is beautiful.  That weaknesses from one person, can help bring out the strengths in another and that acceptance of others, really means acceptance of ourselves.

Walk beside me

As a child grows and enters school, I suspect a fear of all parents is, "will my child have friends?"  And for parents with children with special needs, that fear extends to "will my child have friends that accept them; exactly the way they are."

I admit, I had these fears even before Isaac was born.  We all want to be loved and be liked, right?  So of course that extends to our desires for our children.  The other day I was given this picture from Isaac's teacher.  There are so many words I could use to describe it, but really, I think just looking at it is all one needs to feel the love from it.

As I searched for quotes on friendship, this was the best one...

“Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend.” 
― Albert Camus

Yes, exactly that.   My wish for Isaac; my wish for Gabe; my wish for Hila; my wish for all children.  Let us embrace this idea.  Because everyone deserves a true friend.

Party Trick!

Isaac has a special party trick.... when he is in college and wants to really mess with people, he can just lift up his shirt and share that he has no belly button.

Yep, no belly button.  Thanks to his omphalocele.  An omphalocele happens when the intestines and sometimes other internal organs grow into the umbilical cord.  They are sealed in a thin membrane.  When he was born, they cut his umbilical cord with special thread then two days later they carefully tried to push in his intestines and close him up.  He was only 5 pounds at birth though and pushing everything into his tiny body could have meant that it all burst open again so they didn't continue to close that up in his first surgery.  Instead, we actually painted him omphalocele with a special cream and skin grew over that place.  About two months later, skin had grown over his omphalocele and he had a flat, little belly.... special with no little button to collect dirt.  (As a side note, when he was 15 months old, they surgically closed up that part of his abdomen).

I am sharing this special trick with you today because tomorrow, January 31 is Omphalocele Awareness Day.  Omphaloceles can occur in isolation or with other birth defects.  The "O" in OEIS complex stands for omphalocele.  Omphaloceles can cause serious problems for babies and require many surgeries.  We are so fortunate that for Isaac, his omphalocele was one of his easier defects to repair.

So today, I celebrate my little "O" warrior and all of his dear friends that are fellow warriors.  They all have awesome party tricks to share with their buddies someday!  I hope that they are proud of their special bellies.

A bit busy

We have been a bit busy lately and I am finally getting around to writing again.  Not only did we celebrate Gabe's fifth birthday on December 19...

 but we also welcomed our baby girl into the world on December 23, Hila Faith! (For those wondering about the pronunciation, it is Hi-la, with a long I sound.)  She is named after my great grandmother whom I always admired.

Isaac joined Gabe in the ranks of big brother!  Here is our first family photo of 5!

Isaac and Gabe have both done well with the changes.  Isaac has always done things on his own timeline and there was no exception to accepting his baby sister.  Unfortunately, he was sick with a virus and ear infection the first week of her life.  He has not shown much jealousy towards her at all, just some indifference in the beginning couple of weeks of her life.  He really liked to tell her everything that was going on (because he is quite the talker these days), but he kept his distance.  Which was actually a blessing since he was sick!

But last week, he came over to Hila on my lap and gave her the tenderest touches and then said, "I want to hold Hila.  (or as he says it, Hiya).  Of course, I jumped at the chance and took as many photos as I could.

Gabriel has adored Hila from the beginning and it is so sweet to see him always want to love on her.

We were lucky to arrive home on the night of Christmas Eve so that we could spend Christmas morning with our two boys and our families that were all so wonderful to travel to us for Christmas!

We truly couldn't have asked for a better Christmas gift!  We hope that you all had a wonderful Christmas and we wish everyone blessings in the new year!