Showing posts with label Personal. Show all posts
Showing posts with label Personal. Show all posts

Friday, October 24, 2014

And then there were....SEVEN?

Kids, that is!

Let me explain...

I probably will make little sense considering my emotional state right now...

But, I can't stay quiet about God's faithfulness in leading us!

If you want the short version...we just got the approval to adopt a second child from China!  If you don't already know, we had previously been approved to adopt a 4 year old little girl from China.  Now we are adopting both her and a 2 year old little boy!

If you want the very looooooong version.....keep reading.  :)

Let me start back on September 6th.  I was scrolling through some China Adoption sites on Facebook and came across a photo.  Generally, I love just looking at these sites, praying for these kids and watching their parents step forward one by one.  This little boy's eyes just drew me in.  I was actually confused because he was in a pink coat, yet the name read TEDDY.  Come to find out, an adoption advocate was looking for him, but thought he might be locked with a family interested in him at the time.  Apparently a few families has asked the agency that had his file a few weeks before to release it, but no one could find him since then. I asked my agency to look for him on the shared waiting child list, but they had no luck.  They said they would keep their eyes out.  The little boy had just turned two and had albinism.  Besides the color of his skin, he was a typical toddler!  We probably didn't have enough identifying information to search for him effectively.

Fast forward a week and I'm doing an Adoption Fundraising Garage sale at the home of some very generous friends of ours.  An older couple just about fell over when they saw my posters about Frannie, the little girl we have already been match with, being from Hohhot, Inner Mongolia.  Their son-in-law grew up there for 7 years and his grandparents still lived there.  They were so excited to share their daughter and son-in-law's contact information with us.  The next day their daughter came by to meet me!  She was so incredibly sweet!  They had a 4 year old boy born in Taiyuan City, lived there for 4 years, visited Hohhot many times and were also in the process of adopting from China!  She offered to translate paperwork or videos any time we needed it during the process.  She was so encouraging and too kind.

Fast forward another week.  On September 19th I get a message from my agency contact that they found TEDDY and we would have 72 hours to decided if we wanted to ask China to adopt him.  Someone had posted they saw him on the shared list and my agency responded right away to get the information needed!  

Whoa.  Heavy.  

I had asked for his file, but I really wasn't prepared to actually have the option to move forward with him.  I was a little shocked, yet excited.  Though, my initial instinct was that Mr. Prince would say no and I've just wasted my agency's time.

I looked up a ton of information about albinism, added myself to Facebook pages for parents of children with albinism, emailed a few parents and learned all I could before Mr. Prince got home.  We talked a lot throughout the night about fees, adjustments, finances, etc.  It was after 11PM when an adoption friend of mine was messaging me who is adopting two children from China.  She had named her kids Eden and Ezra and were were talking about their special needs.  I love both those names and thought the matching 'E' is sweet.  All of a sudden "Frannie and Finn" popped into my head.  Finn, or Finton, was the name we would have named Miracle, our 5 year old, had she been a boy.  While Paul and I talked, I looked up the name meaning for kicks... and stopped in my tracks.

Finton: Irish meaning "fair-haired” or could mean “white fire"

I just laughed.
And then I looked at Mr. Prince in shock. 
Then I covered my mouth.
Then I asked him if he wanted to know what I just read.  He said yes, hesitantly...
But, a smile grew across his face, too.

Of course I'm battling the "Is this a sign from God" thought.  I kept wondering HOW we would know in 72 hours whether or not to move forward with this little boy.   Was this it?  If not, it was kinda freaky!!

We actually sent TEDDY's file to the Chinese couple who offered to translate videos and paperwork that night.  We knew they may not be available, but it was worth a shot!  We were curious what these nannies were saying to him in the video and how he was responding.

I asked many friends to pray the next day.  A couple who had adopted two siblings from another country dropped off some bunk beds for us that morning.  Who better to pray for us than someone who has been in this exact situation, right?  They were happy to pray for us.

Then I ran into another lady picking my kids up from a program for kids with siblings with special needs.  We had met these two Chinese girls at a park earlier in the summer.  My kids got along well with them and wanted me to meet their dad.  I gave him my number for his wife to call me.  She did mid-summer, but I was so busy I forgot to return her call!  Oops!  Well, one of her daughters was at the program and Angelica Pickles, my 8 year old, had given her daughter my number again!  We chatted for a while and I asked her to pray for us as well.  She had adopted an infant 10 years ago and a 7 year old two years ago from China.  She was very happy to pray for us and asked for me to keep in touch.  Very cool.

I also talked to my mother-in-law that afternoon.  See, my mother-in-law had 4 siblings with albinism.  They had a rare recessive condition called Chediak-Higashi Syndrome, which included partial albinism and immune suppression.  They all died young, by the age of 8, from infections.  She told me they all wore glasses and they used a petroleum-like salve to protect their skin 50+ years ago.  One had photophobia, another shook his head to focus.  It was neat to hear more about her experiences with her siblings.  Part of the reason I felt an immediate connection to this little boy was because albinism was in Mr. Prince's family.

Later, I got a voice message from the Chinese couple that they had reviewed the files and were excited to share with us what they heard.  In fact, TEDDY was in the exact city their son was born and the city they lived in for 4 years in China!  What are the chances the two cities they were familiar with were the two cities the two Chinese children we had chosen were from?!  She called me and told me TEDDY seemed to follow his nanny's commands well, had good fine motor skills and didn't seem to have some of the typical orphanage behaviors.  The paperwork didn't have anything hidden in the Chinese that wasn't in the English.  They said there is a fast train between the two kids' provinces, therefore a cheaper mode of transportation if we ended up adopting them both.  She even said she had seen TEDDY on an advocacy site and thought he was adorable and prayed for his family!  She asked to pray with us right on the phone and prayed for clear confirmation or walls so that only God's Will would stand firm.  My heart was full when we got off the phone.

I had been talking to Mr. Prince through percentages all along: 0% means not submitting paperwork, 100% means submitting paperwork to try to adopt TEDDY.  I was pretty much 100% by midday, but I was set that Mr. Prince had to be on board as well.  I wasn't gonna steer this boat alone!  He had been a 55% the night before.  It wasn't long after our phone conversation with this couple that he told me he wanted to submit our Letter of Intent for TEDDY!

Then, I got another email from the Chinese couple that night.  TEDDY's Chinese name pronunciation and meaning! 

Get this...  His name means 'Healthy' and 'Exceptional or Unique'!

I LOVE it!! 

Well, Happy 33rd Birthday to ME.... the next day we submitted our Letter of Intent on September 21st!

On my birthday at church, God truly blessed me.  It was a baptismal service.  I love spending an entire morning singing praise as we watch people profess their love for God and acceptance of Christ's sacrifice!  But today, I watched two little girls who were adopted internationally when they were toddlers, along with their older brothers, be baptized together.  Oh, my heart!  The gravity of the opportunity to bring home a child (or children) and teach them about the love of Jesus that they may not have had to opportunity to learn about in their home country, was heavy on my heart.  And honestly, I just cried.  Not only did those girls get baptized, but another little girl my daughter's age, who is the grandchild of a domestic adoptive family, was baptized that day as well.  The generations that are affected by one couple's willingness to bring in an orphan just broke my heart that day.

We have been called to something much greater than just providing shelter or even love to an orphan.  We have been given the opportunity to lead these children to a Savior and eternal life!

There is nothing more important in this world.

We have been called.  And we have said YES to that calling.  That doesn't make us saints.  In fact, sometimes I think God is crazy for choosing us.  But, if He calls us, I believe He will equip us. 

I talked with a number of families who had adopted or birthed children with albinism over the next few days.  They had nothing but encouragement for us!  Their children all seemed to be doing great with very few adaptions for every day life.

We were peaceful and expectant.  In my heart I could truly say that I was willing to accept, with gratefulness, both a yes and a no.  Obviously a yes would be the step we needed to bring this little boy home, and God would just need to have our paperwork accepted and provide the extra adoption funds.  A no would tell us that this was not the child for us, possibly that we aren't supposed to adopt another child from China (right now).  But, above all, I would know early in the process that I was just bringing home one child so I could let that hope go in my own heart.  As long as there was a possibility, I wasn't going to stop looking and praying for that second child.  My heart had been, for a long time, to adopt a boy/girl sibling group through foster care.  So, the prospect of bringing home two from China was so exciting to me.  But, ultimately, no matter my heart and desires, I wanted God's Will for our family.  I have no desire to bring home a child not intended for our family and try to raise him on my own strength.  So, I was happy to allow God to make this final decision.

The evening of my birthday I asked Mr. Prince how he was feeling about our decision and his only reply was "100%."  :)  He then shared that, although he still had some concerns about finances, mostly long-term, his concerns didn't really matter because if God is calling us, we have to respond with a YES!

Our hearts were united completely.

Less than two weeks later, our homestudy draft was ready to review.  On the paperwork they approved us for one child, a girl under the age of 5.  I was a little confused, so I called the social worker.  The agency had decided, internally, that they weren't comfortable approving us to adopt two kids at the same time.  They said they knew we could likely handle it, thought we were great parents and were happy to support us in an adoption after Frannie had adjusted.  They just weren't positive the transition with two with special needs into a family of 5 biological children, one having special needs, was going to go well.  They needed to be confident, but weren't.  We asked for a reconsideration, but we got a 'No.'

I was crushed.  We felt so sure!  What does all this mean?

Tears, lots of tears.

About 20 minutes after I got off the phone with my homestudy agency, my adoption agency called me.  In so many words, they said they didn't think our homestudy agency made the right decision.  They said they have the unique perspective of seeing these children in Chinese orphanages and they were confident we could do this well.  They said families like ours with lots of experience with special needs are like gold, and they think these two children's needs fit in well with our current family.  They said they could pull our Letter of Intent for this little boy, or we could wait and see what China says.  They said I have the option of obtaining a second homestudy that states we are approved for two kids if we get Chinese Preapproval.  I thanked them for their kinds words and got off the phone.... and cried some more. 

I was really confused for most of that evening.  But then I started to think about, had we gotten this news of only being approved for one kid prior to finding this little boy, I would have simply succumb to the circumstances.   But, we fell in love with this little boy before I knew there would be a road block!  And because of that, I almost felt more confident that God could, and would, work around this obstacle.  We decided over the next few days that if China gives us Preapproval, we would pursue another homestudy to get approved to adopt two kids.

While we continued to wait, I made some phone calls to find another homestudy agency that might approve us for two kids.  The social worker I spoke with was so king and encouraging.  He said because we had a stay-at-home parent, he didn't feel the fact that we had 5 kids, one with special needs and were adopting two at once sounded unreasonable.  He seemed to understand the perspective of an orphanage and seemed to hear my heart in our short conversation.  He couldn't promise an approval for two, but he didn't see any red flags at the time.  We had a back-up plan.

And then we waited.

Our last Preapproval for Frannie came 25 days after we submitted our Letter of Intent.  25 days came.  26...27...28.  It was a long, hard wait.  29...30...31...

Day 32, October 23rd, yesterday, we got an email from our agency....we received Preapproval to adopt TEDDY....or as he'll be known to us...


Finton 'Finn' Scott Kang Te Kellogg, 2 years old
(Don't let the pink coat confuse you!)
You can see a video of him HERE!


You know where the name "Finton" came from, but his middle name "Scott" is from his great uncle who also had albinism (and it's a family name on both sides)!

Needless to say, we are so excited to bring this little boy home along with Frannie Joy!  And the circumstances and confirmations received were more than enough to PUSH us to step out in faith!  And we know God will be faithful in bringing in the finances because this is His plan!


 Frances "Frannie" Joy Yu Tang Kellogg, 4 years old
You can see 3 videos of her HERE!

After weeks of waiting for our Preapproval and our homestudy, being frustrated in the long wait, God spoke clearly about how His job works.  He knows best.  He is the Great Organizer of our lives.  I got the message this time...

That same day we received Preapproval, I also got a phone call from our homestudy agency.  Our homestudy was ready!  It was to be notarized in 24 hours and they were confirming how many copies I needed.  I debating telling them about our Preapproval while we were on the phone, but I do much better with such confrontations through writing.  I decided I would write them one last petition letter later that day for reconsideration considering our Preapproval.  It would save us $2100 and a number of month in the process. 

Well, before I got a chance to write that letter, our adoption agency called us to say that they had petitioned our homestudy agency themselves!  They thought it was in everybody's best interest for us to be approved for 2 and continue to work with this agency that knows us and loves us.  The social worker agreed to continue a 'discussion' prior to the notarization the following day.  My adoption agency asked us to write a letter about our plans to provide for these two children and include the resources we have to support us.  We sent it later that night, and we waited....again.  Thankfully it was less than 24 hours this time! 

Well, we were told today that our agency is willing to work with us throughout this adoption process to it's completion, and is going to approve us for 2 children!  Only God could have orchestrated our Preapproval from CHINA and our homestudy from INDIANA to culminate into this discussion!  And it's just one more of MANY obvious confirmations that we are following God's plan to grow our family!

Needless to say, this is going to be an expensive endeavor.  But, our God owns a cattle on a thousands hills, right?! (Psalm 50:10)  We know he will use other people, fundraisers and organizations to bring these two children home to us!

If you feel prompted to support our family to adopt these two adorable children, we are launching our next fundraiser today!!

We have puzzle pieces you can purchase to help us make a Chinese puzzle for these two kids to play with.  It's an I SPY type puzzle where they look for traditional Chinese items within the puzzle.  We think they will LOVE it and it gives a little excitement and fun to our fundraising (especially for our bio kids!).

Each puzzle piece is numbered between 1 and 100.  You choose the piece you want and donate that dollar amount, or we can randomly draw one or more pieces for you!  When the puzzle is complete, we will have raised $5000!  You can combine your donation with a friend, as well.  We will be writing names on the back of the puzzle pieces so we have a keepsake of those who donated toward our adoption in this way.




To donate, locate the Paypal donation button on the top right corner of our blog.  You do not need to have a Paypal account to donate.  Tax deductible donations can be made at http://atwakids.org/.  Just be sure to tell them it's for the Kelloggs!  You can email me at mommykellogg@hotmail.com if you have further questions.  If you want to donate any amount, feel free!

I'll update this blog regularly to show which puzzle pieces are still available!

Thank you so much to everyone who has continued to support us as we venture out into this crazy adoption journey!  It has been a ride, for sure!!

(If you want to hear our whole adoption story, you can read it HERE and HERE.)

Please, PLEASE share our story on YOUR Facebook page or blog!!  If everyone who reads this gives just even $1, we will have thousands immediately!!  

God is good, ALL THE TIME!





Sunday, June 22, 2014

Family Update *BIG NEWS*

It's been FOREVER since I blogged.  And a lot has happened in the last year.

Allow me to summarize...

We completed our school year last month and I'm currently planning year 2014-2015.  Sid the Science Kid will be doing mostly high school work during his 7th grade year, Gracelyn will be going into 5th grade, Angelica Pickles will be in 3rd and Boo Boo will be in 1st/2nd.  Miracle will continue to stay home with us due to the help of a nurse during my 'teaching' hours.

This year I'm making lots of changes to my curricula due to being in school full-time myself.  This past January I started full-time midwifery school.  It was a difficult semester managing homeschool, a home and my own school....but we survived!  This is a two year program that will take 2-4 to complete due to attending a required amount of births and prenatal appointments.  I'm SO excited about this program because birth and pregnancy has been a passion of mine for so many years!   

Mr. Prince continues to teach 3rd grade students at a local elementary school, but had a rough year.  Teaching is becoming more and more difficult as our culture shifts.  He is currently working at a summer Clubhouse program and really enjoys his time there.  Mr. Prince has been an incredible help this last semester picking up the slack I've left as I did school for hours and hours every evening.

MommyK and Mr. Prince at a cousin's wedding, 2014

Sid the Science Kid has 'graduated' from his church's elementary school program and is now in the 6th-8th grade program.  Exciting, but he is already starting to learn about 'cliques' and 'cool' kids.  I don't look forward to these middle school years coming up for any of my kids.  He is still doing leaps in bounds in school and completed a Pre-Algebra program this year!  I'm finding it hard to keep up with him.  I'm praying these next few years he finds some passions (other than Legos) and starts to develop a love for something.  These are important years coming up and I'm a little nervous about parenting a tween!

 Sid the Science Kid (11) with Miracle (4)

Princess Pea has bloomed in her dance classes this year and has matured a lot.  Academically she is keeping up with her brother and blowing me away.  She has been watching me do the laundry for years, and last month, asked to fold a basket.  She did awesome!  So, I told her for the summer I would pay her $.50/basket to help her raise money to buy her 3rd American Girl Doll (this will be the second doll she's purchased herself).  I haven't folded a load of laundry for WEEKS!  She is such a little helper and little mommy.  She blesses my heart so often!

Princess Pea (9) practicing for her Restored to Glory Presentation

Angelica Pickles just turned 8 and is still a very spunky little girl!  She had a rough beginning of her school year, but by the end of the year she was enjoying school and reading much better.  We also found out how crazy quick at math she is!  She has grown a lot dancing for Restored to Glory this year as well, and it was her first year in a different class than her sister.  She really bloomed in some friendships at church and I'm excited to see her interests in church activities, school and dance take off this year.  She adores her baby sister and often takes time to play with her daily.  She loves to help in the kitchen, too.

Angelica Pickles and MommyK

Boo Boo's personality just keeps getting better!  He's a such a clown and tries to be funny constantly.  His newest thing is the daily mo-hawk.  I have no idea where he comes up with these things.  Boo Boo finished his entire 1st grade math book this year and is reading at a 2nd grade level.  He seems ready academically to be going into 2nd, but he still seems like my baby!  I'm thinking I'll have him straddling between 1st/2nd this coming year.  He loved the soccer and basketball teams we put him on this year and is probably the one who uses the 10ft hoop we purchased for our backyard the most.  He constantly wants to be outside.  We really enjoy what he brings to our family.

Boo Boo (6) and MommyK

Miracle has had a pretty uneventful year, which is some ways is a good thing!  Her seizures have been under control for the most part and she's been happy.  She now sleep in her sister's room, per request of her sisters, but still takes naps on our laps or the downstairs couch.  Her head control hasn't improved much, but she's eating a few ounces 1-2x daily!  We just received her Upsee harness this past week and I cannot wait to work on walking with her in that!  We had numerous friends donate the $489 to pay for the Upsee a few months ago and are so thankful for their constant love and support!  

 Miracle (4) happy in her stander!
Miracle has changed our family's perspective on life completely.  And that brings us to our next update...
Stay tuned for my next post!  :)

Tuesday, September 24, 2013

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.


Wednesday, August 7, 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