Miracle Myra is FOUR!

This is sort of an odd day for me.  Myra seems like she's been around forever, yet I can't wrap my mind around calling her four.  She is, in fact, a large four year old.  So, that I can assure you!  Carrying her 34lb- 40inch self is getting harder and harder for any period of time.  I loved carrying her in my sling or wrap.  I just cannot do it anymore.  So, in that way she very much feels like four.

But, I simply cannot believe her birth was a whole four years ago.  I remember that day so clearly.  It is probably the worse day I've ever experienced, yet that experience has changed the course of my life forever.  In many ways I wish I could take it back and change it.  In many ways I wouldn't dare, for the person I was fours years ago on September 23, 2009 is no longer living.  I sort of had a birth of my own on her birthday four years ago.

(If you don't know her birth story you can read it HERE.  Her step by step story is typed below her photo in the right column but you can also read more about her MRI results HERE and her diagnosis HERE and my perspective HERE and HERE.)

I'm almost as a loss of words today.  It's very hard to describe my feelings.  I honestly never thought we would be where we are four years later.  I truly believed Myra would be running around with her siblings and chatting up a storm by now.  Don't get me wrong, we celebrate each and every accomplishment - ask my Facebook friends!  And I've learned well that milestone lists are not what is important in life.  I've seen compassion for people who are different grow in my children, and that has been amazing.  I look at each and every child around me with a sense of wonder.  Their abilities amaze me, their speech, their laugh, their toddle as they learn to walk, their big noggins.  I see things through different eyes.  This I like.  I'm more appreciative.  More observant.  More in awe of God and His creation. 

And I feel like I can actually see through Myra, to her heart.  Through the cries, through the screams, through the protests during therapy.  She's a super sweet personality.  Very laid back, in fact.  She loves to observe, but if you involve her in something, she lights up.  She loves people, loves listening to them talk and interact.  She loves music- Celtic, country, lullabies, guitar, banjo, men's voices, bells.  Most people either see her crying or staring off into space.  But, she's listening.  She's interacting every way she knows how.  She may not react when you say 'HI', but if you just stayed a moment longer, often a smile will erupt just as you walk away.  Her reactions are delayed, but they are there.  She loves when kids play with her, play with her toys, touch her hands and face.  Many kids at church or on outings come up and ask about her hearing aids while touching her ear or start playing with her toy.  Most parents shoo them away, but she loves that.  They don't understand it's the only interaction with other children that she gets besides her siblings.  I can see her light up when her 3-year-old cousin comes to say 'HI' as she starts playing with her toys, touching her hands and talking to her.

Myra is the best cuddle bug.  She curls up in her dad's arms, my lap or envelops one of her siblings completely as they try to manipulate her as she's gotten so big.  She loves to listen to our heartbeats and is content for so long with that.  She feels safe.  Her vision isn't great, so when she goes for periods of time in her wheelchair or on the floor and she isn't hearing constant chatter, because the kids are outside or I'm cooking in the kitchen, she cries because she's lonely.  She is a people person.  I wish you could all know her like I do...

The fact that Myra isn't mobile or verbal stinks.  Truly.  But, the biggest heartache isn't that I can't mark it off a chart to say that she did it, but that she cannot express herself like the rest of us.  She's in there and can't tell us all she's thinking and feeling.  She's trapped in a body that doesn't do what it should.  When she's crying and we can't figure out why, I'm just heartbroken.  That is the biggest thing to swallow.  That no one else knows her like I do, and I don't even know her like God does.

But, can't you see her spunk?  :)

Our pastor shared a vision with us when she was only hours old.  He said she was around the age of three and was dancing at the alter with dark, curly hair and everyone could see the glory of God on her.  I have chosen to believe this vision wholeheartedly and have tried hard to not to put God in a box.  I'd like to think that this means she is healed completely of every single disability, but I know that that may not be true.  But, I am still waiting.  Despite the fact that she's now four, I'm still going to wait.  God is not one to break His promises.  But, I think of the possibilities if she is healed completely- the people I would tell, the story she would have, the vast number of people that would witness God's healing hand and how many people this could affect in their walk with God.  The truth is, she IS a miracle!  We HAVE seen God heal her in so many ways already.  I HAVE told many people and she IS affecting people's lives, just as she is.  So, all I can say is, even though my little human brain can make plans and see the benefits of a completely healed little girl, God often uses those of us that are broken to make the biggest statements and touch the most people.  And though I'm not completely ready to let my dreams of complete healing go, I can accept God's plan for her life. 

If I've learned anything in these last four years, it's been that His plans are greater than mine.

This song sings my heart....

"Even If" -Kutless

Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

Lord we know Your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

You’re still the Great and Mighty One
We trust You always
You’re working all things for our good
We’ll sing your praise

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn’t come
Even if the healing doesn’t come

And even if the healing doesn't come in this lifetime, it is coming. 

I can rest in that.

I love you, Myra.  More than you will ever know.

But my love is incomparable to HIS.

Day 1 DONE!

Finished with Homeschool Day 1 and completed and graded everything by 2:30pm!  Now, we aren't doing our full school schedule, but doing chores and getting back into routine is taking quite some extra time.  We got done all I had planned, so I am pleased.  Despite feeling like I'm only half ready for school this year, we had a fabulous first day!

Tomorrow we will add in flash card work, poetry and scripture memorization and our Answers in Genesis apologetics curriculum.

Next week we will add in science, history and Character Quality Language Arts.  I still have lots of planning to do with these.

First Day of School photos, unedited and unplanned....

 Boo Boo's first day of 1st grade!

Angelica Pickle's first day of 2nd grade!

Princess Pea's first day of 4th grade!

 Sid the Science Kid's first day of 6th grade!

I also made over seven phone calls this morning taking care of a few things since I've been gone three weeks.  We realized last night that our monthly order for Miracle's g-tube supplies and formula hadn't arrived yet.  We have supplies for TODAY and that's it.  They had some excuse about Medicaid changing things, but it's ridiculous UNacceptable, no matter what excuse they have.  A local branch will bring us supplies to last a few more days as they work out insurance issues, but nothing will arrive before 10:30AM tomorrow.  I will have to throw some baby food together for her morning feeding to get us through the morning.  That added some extra stress to my day! 

Had to throw in these pictures from our church's carnival yesterday, they are so cute!  I think my 10 year old is too old for face painting, but whatever.

See other First Day of School photos at the Not Back to School Blog Hop 2013!

Managing a NICU Baby with Children at Home AND Life as a Special Needs Mom

The hospital where Myra was born is putting together an informational and encouraging book for parents who find themselves in the Newborn Intensive Care Unit (NICU) with a medically fragile newborn.  I have been asked to write a few excerpts in my experiences with Myra, specifically managing a child in the NICU with other children at home and having a child with special needs.  I thought the Blog World might enjoy these excerpts, also.

Life with a medically fragile newborn and four children at home:

                When our daughter Myra was born under traumatic circumstances, my husband and I had four other children under the age of five at home.  We had generous family to help watch them for the first week as I recovered from my C-section, but after about 10 days everyone else’s life had to go on, so we were left to manage our five children between the two of us.  Because of my attachment parenting style, I never wanted to leave my daughter’s side.   And I didn’t for the first week.  My children came to the hospital to visit Myra and me.  Then, the H1N1 virus caused the hospital to not allow children under the age of 18 in the hospital at all, and we had to come up with a new plan.  I had a very needy newborn in the hospital that wasn’t promised to make it through her difficult circumstances, and four very needy children at home that didn’t understand why their Mommy wasn’t around and why their baby sister was hooked up to all these machines and not snuggled in their arms at home.

                 We created a schedule that allowed both of us to visit Myra and spend time with our other kids, trying to make life as normal as possible.  And thankfully my husband was able to take off work all 30 days she was in the hospital.  I would stay the night at the hospital and come home early in the morning.  My husband and I would switch and he would visit Myra for about two hours while I visited with the other four kids.  Mid-morning we would switch again and I would spend the day at the hospital.  At dinner time I would go home and eat with my family, all six of us together at the table.  After dinner my husband would visit Myra for another few hours, and in the evening we would switch again and I would stay the night.  My kids always had a parent home and knew we would all be together every evening.  They seemed to do great through the whole process.  We had an amazing church family that provided meals for us for many nights that made our life a little easier.

                In these 30 days we read books to our kids about sick siblings, discussed Myra’s condition and prayed with them.  A friend put together a brag book of photos of Myra and we looked at them often with our kids.  We explained all the tubes and wires and how they helped her get better.  When they visited her the first time at two days old I think they still were shocked, as anyone would be, but they were able to see through all the ‘stuff’ and smile and love on their baby sister.  We put the pulse oximeter on them and let them touch her and ask more questions.  And I’ll never forget their faces when they saw Myra again the day she came home, weeks since the last time they had seen her.  There have never been four more proud siblings in the whole world!

Mommy and Myra bonding

Kangaroo Care

Day 2, swollen

MommyK and Mr. Prince

Day 14, surgery for g-tube and Nissen Fundoplication

We both cried on and off for 15 hours while did a poor job of managing her pain

Day 11, First Family Photo

Day 30, Homecoming! 

Princess Pea (5), Angelica Pickles (3), Sid the Science Kid (6)

 

Boo Boo (18 months)

 

 Angelica Pickles (3)

 

Princess Pea (5)

Sid the Science Kid (6)

Adapting to being a parent of a child with special needs:

                Perfect.  That’s what we all want as we rush to the hospital in joyous expectancy of our newborn.  I had experienced four of these types of births.  I couldn’t wait to delivery our fifth.  But, our daughter Myra was born via C-section after broken waters, with significant amounts of meconium, and when her heart rate rapidly declined during early labor.  Myra suffered ‘severe global brain damage’ from lack of oxygen.  The doctors painted a grave picture while we were in the hospital with scary words like ‘cerebral palsy’, ‘mental retardation’ and ‘developmental delays’.  As any parent, I just wanted the best for my child and the expectancy of having a ‘healthy’ or ‘perfect’ baby seemed to be buried in the sand somewhere.  We clung to our faith, praying that God would do a miracle in Myra’s life.  We had a difficult 30 days in the hospital and brought home a tiny little newborn with only questions for her future.  She had many doctor appointments in the first few months, sometimes as many as 12 in one week.  I had five children ages five and under that I dragged around with me to every one.  She seemed to be developing ‘normally’ for the first weeks and we thought all would be well.

                Then, I started to questions whether she was hearing okay.  And she didn’t seem to look at me like my other babies did.  It was hard to change her diaper because she wasn’t as limber as my other children.  And at a few months old, she still wasn’t trying to play with toys or hold up her head.  All those words the doctors had mentioned started to repeat in my head.  I think my heart broke over and over in that first year as the milestone charts were thrown away and we realized that raising this child would not be like our other four children.

                Our first year was filled with therapies multiple times a week, numerous doctor appointments, hospital stays due to seizures, disorders that required me to give her shots for 4 months and other medical emergencies no child should ever have to endure.  Through it all, we were able to snuggle with our little girl and watch our other children love on her, and were so thankful she had made it through those first 30 days.  It was hard with so many sleepless nights and trying not to worry constantly, but we persevered and started a ‘new normal’ for our family.

                Over the next few years the diagnoses came.  Many of those scary words the doctors had mentioned after she was born, but not all.  ‘Microcephaly’ (small head), ‘epilepsy’, ‘cortical visual impairment’, ‘hearing impairment’, ‘developmental delay’, ‘oral feeding dysfunction’ …the labels stacked up.  The kicker: ‘Cerebral palsy’.  I eventually came to accept this as a diagnosis of her body, not a diagnosis of her being.  This is just a description of how her brain is communicating with her muscles, it’s not who she is.  What gives a child real quality of life amongst all these labels?  I’m still learning the answer to this question, but I’m on a path to find out. 

                At around 20 months our therapist suggested we get a wheelchair since Myra was growing out of our stroller and high chair.  I felt like if I ordered it, I was giving up on her.  It took me a number of months before I realized that this was just a tool.  Something to help her right now in her current circumstances, but didn’t define her future abilities.  This pattern repeated as we added hearing aids, hand splints, adaptive stroller, Ankle Foot Orthodics, a stander and a gait trainer to her list of assistive devices and ‘tools’.

                No matter what, Myra will always be our miracle.  God has proven his love to us over and over and we have seen so many miracles as Myra has defied her circumstances and done much more than the doctors ever thought she could.  And they need to keep watching, because I know there are more miracles coming!

                Having a child with special needs isn’t a cake walk.  But, it is the greatest adventure as you learn the true value of a person, learn that service is more rewarding than receiving and learn that life is more than milestones, achievement tests and labels.  And the byproduct of having four other children watch Myra grow is amazingly compassionate children, un-phased by physical or mental disabilities.  Children who see value and potential in all persons.   And I personally have a new definition for life, happiness, contentment and unconditional love.  I can look back and see how positive this experience has been for not only our family, but friends and acquaintances, and I know Myra’s complete story is not yet written.  So, we continue to press on…proud of our daughter and all the more better because of her existence, exactly as she is.   

Perfect.

 Therapy

Seizures :(

Sisters

 

Joyful!

Cuddly

 Daddy time

Sisters playing

Stander

Bike at therapy

 Cousins

 Gait Trainer with Ankle Foot Orthodics

Unconditional Love

 Sibling Fun

 Therapy Cat, Oreo and Miracle