Lizzie Land

Lizzie is two.  She is a very precious and special two-year-old.  She brings joy and light to our household.  She also is a miracle in and of herself.  I had two miscarriages before finally conceiving her six months after my second miscarriage.  I had prayed and asked God to give me a healthy pregnancy and a baby 'not like Katie'.  Katie is my sister.  She has a genetic disorder known as an unbalanced translocation.  She is mentally handicapped and is totally dependent on my mom and dad, even at 25 years of age.  I am a carrier of the genetic disorder, meaning I have a balanced translocation.  It was my prayer that my children not have to deal with never being independent of their mom and dad.    As every parent wants, I want to see my kids go to college, get married, have kids, and lead a 'normal' life.  I was told that I only had a 10% chance of carrying a child like Katie full term.  Most pregnancies with a genetic problem miscarry.  The woman's body senses the abnormality and naturally rejects the baby most of the time before a mother even knows she is pregnant.  I found out I was pregnant with Lizzie after a full day of playing in a snow storm that randomly hit South Carolina.  I went sledding, tumbled down hills, collided with Jason...we had a lot of fun, though we sure felt those bruises later!

Yep. Sledding while pregnant. Smart.

After experiencing two miscarriages, I was terrified when I found out I was expecting again.  Jason and I were both shocked, excited, and scared to death.  Yeah, yeah.  I'm a Christian, and that means that God is with me and directing my life, right?  But that doesn't make me less human.  Rather, giving up control is a pretty terrifying thing to do.  If I could have controlled my pregnancies and knit together my babies in my own womb, trust me, I would have.  However, that is irrelevant to Lizzie's story.  Being the nonconformist that I am, I never call the doctor as soon as I find out I am pregnant.  Nope.  I wait until 11-13 weeks along.  That first ultrasound is more...informative.  There are arms, legs, and a head to see instead of a little blob.  Plus, I am a bit of a naturalist.  The fewer ultrasounds, the better.  God does intend for some things to be a mystery.  So, here is my Lizzie in my belly:

Isn't she a doll? :-) 

I had a pretty uneventful pregnancy.  I put on 40 pounds of pure pregnancy weight.  I had a lot of amniotic fluid.  Really, that should have alerted me.  I was induced with Lizzie three days after her due date.  After 28 grueling hours (seriously, don't go on pitocin if you don't have to.  That stuff makes labor SO MUCH WORSE!  Just wait.  Your bundle will come when he or she is ready.), I was rushed back to an emergency c-section.  It seemed like the worst possible ending to a pretty good pregnancy.  All the drugs they had to give me and the recovery time...ugh.  For awhile, I blamed the drugs for the delays I started to see in Lizzie.  Oh, wait.  Here she is as a newborn:

The first few things that started to make me concerned were her lack of muscle tone and her reactions to external stimulation.  Flourescent lights, perfumes, medium level noise (like in a grocery store), and too many people in one room at once seemed to send her into a frenzy.  Her pupils would dilate, her hands would start shaking uncontrollably, and then she would just suddenly conk out into a sleep like she fainted.  That is known as overstimulation.  Once she got neck control, she liked to rock her head from side to side, which Katie does.  She also had sensory issues with food and stuff she touched.  Some things made her squirm, while others became a point of obsession.  The doctor monitoring her growth kept voicing concerns and wanted me to take her to a variety of testing.  One main reason for wanting to run tests was because I refused to vaccinate Lizzie, and the doctor wanted to give her 'vaccine immunity' by coming up with a diagnosis.  Now, I am not hopping on this vaccine bandwagon.  I have seen both sides and completely understand both stances.  However, you cannot know whether or not vaccines will injure your child until it is too late. And I have grown up with a special needs sister who had children in her classes that were perfectly normal until they received their vaccines.  I did my own research and reached the conclusion that I wasn't willing to risk my children's health based on the 'herd mentality'.  I am a stay-at-home mom and felt that my children did not need the vaccines.  Do your own research and come to the decision that is best for your children and your family, but please do your research!  Don't go with one side or the other based on other people.  Check into both sides with an open mind.  By the way, Lizzie and Judah have an awesome pediatrician in the Charlotte area that I highly recommend if you are looking for doctors who will honor your choices as a parent.

While I was pregnant with Judah, we took Lizzie to a doctor who sent off some of her DNA for genetic testing.  They put a rush on the tests to try and get the results before I delivered Judah.  God had other plans.  Judah was born three weeks early.  We were still celebrating Judah's miraculous birth, but we didn't realize we had two miracle children.  Two weeks, after his birth, as we were leaving his newborn photo shoot, I got the results phone call.

Trisomy 20 and Monosomy 16

The call revealed that Lizzie has an unbalanced translocation of chromosomes 16 and 20.  Trisomy 20 is actually the most common unbalanced translocation and results in developmental delays and 'learning disabilities despite normal intelligence'.  Physical problems include low muscle tone (hypotonia), spinal abnormalities, and developmental delays due to low muscle tone such as difficulty swallowing, latching, talking, sitting up, walking, etc.  The genetic disorder is considered rare when paired with Monosomy 16.  There are, in fact, no other reported cases to compare Lizzie to.  I will tell you this, one of those is a hair gene because both my kids have a load of hair.  Oh, yeah.  We just recently found out that initial tests on Judah were wrong.  He also has Trisomy 20 and Monosomy 16.  Now, before you start shaking your head in pity, let me tell you that both my babies are true miracles. I should have miscarried them.  They should not be here, but God.  That's it.  But God.  He saw fit to make their lives a reality.  I am completely thankful for both of them.  Part of the genetic abnormality is a sweet, easy-going, loving, cuddly personality.  Lizzie and Judah are both cuddlers.  They love to be hugged and rocked.  They love sleep (praise God!), and the time others spend with them seems priceless to them.  They smile and laugh easily.  Lizzie has always been easy-going even in stressful situations.  My sister, Katie, has also always been sweet and easy-going.  She loves being around people and loves to laugh.  You may be asking, "Are Lizzie and Judah mentally handicapped since Katie is and they all share the same translocation?"  No.  A mental handicap has not shown itself.  Here's where God answered my prayer.  Yes, He answered my prayer.  You see, He answers according to His purposes.  Katie was born naturally and inhaled fluid during birth.  She suffered oxygen deprivation.  Lizzie and Judah were born via c-section.  I had plenty of time to naturally deliver them.  I was very close to delivering Judah, but God had other plans.  He intended to answer my prayer by having me have a c-section.  Jason always says that God works through the natural to bring about the supernatural.  We just don't view things that way.  Yeah.  I was disappointed to have c-sections.  Recovery stinks, and my belly button will never look forward again, but God oversaw that process in order to answer my prayer, and I praise Him for it.  This mangled, scarred body of mine produced two incredible, against-the-odds miracles.
So, Trisomy 20 causes developmental delays.  If you want to compare milestones, here are Lizzie's so far:

Holding her head up steadily: 4.5 months old
Pushing up into a crawling position: 12 months
Sitting up without support: 11 months
Crawling: 13 months
Pulling to standing: 16 months
Walking: 20 months

She is still not talking at 30 months of age.

And Judah's because he is a little different with his:

Holding his head up steady: a work in progress

Pushing into a crawling position: a work in progress

Sitting up without support: 8 months old

Crawling: Not yet at nearly 10 months old

Fine motor skills like transferring objects from hand to hand and clapping things together are on target, which they weren't for Lizzie.  I am hitting on physical milestones, but there are other milestones, too, that they have hit on time.

Lizzie started occupational therapy at 12 months of age.  We found out about her genetic disorder at 20 months of age.  She then qualified for more therapy.  She has two occupational therapists, a speech therapist, and a physical therapist.  Judah started therapy in February 2014 with a physical therapist and two occupational therapists.  Early intervention really is key to helping a child.  We lead a busy life.  Therapists come Monday through Thursday.  We drive an hour to take the kids to physical therapy.  It's hard.

Here's a picture of Lizzie at 3 months old for good measure.

Reality

There are times when I look at my kids and wish they were 'normal'.  That Lizzie could just tell me what she wants.  That she would be able to drink out of a regular cup with the rest of her Sunday School class instead of needing a sippy cup.  That she could play with other kids instead of standing on the outskirts.  That she could walk without tripping so much.  That she could talk to the other children and adults that she is around.  I have always wanted to homeschool my kids.  I was badly bullied in school and want to protect my children from that.  Especially now.  I have to face facts that I may never be able to homeschool.  That my kids will get made fun of like my sister for riding a 'short bus' and being 'retarded'.  The sting from hearing that junk in regards to my sister is still there.  It hurts even writing it.  But now, my kids, too?  I wouldn't be human if I said I was completely okay with this.  I see other couples who conceive outside of wedlock, have normal, healthy children, and go about their lives as normal.  It's hard to understand why God chose this path for my family.  I would be lying if I said I haven't cried over it.  I would be lying if I said that it did nothing to affect my faith.  It has absolutely shaken me to the core.  It has made me feel isolated and fiercely protective of my family.  That goes for my husband, too.  Don't mess with Jason.  He has walked this road with me as a supportive, loving husband.  He hasn't blamed me for anything, though I am the reason my kids have the genes they have.  He loves our children and supports their therapies and the time I have to put into helping them.  I am so lucky, and I know it.  Of course, I will always blame myself in my heart.  My dream of having four children has been forever destroyed.  I have my hands full as it is.  Sometimes, I really feel like I am going to lose it.  Like the calm outer defense that I have created is going to crumble and result in a hysterical meltdown *gasp* in public.  I hope that doesn't happen.  I am just being raw and real here.  It is hard seeing my kids struggle with things other kids take for granted.  It.  Is.  Hard.  But it all comes back around to faith.  Part of me finds strength in knowing that God fought for my children's lives against all odds.  Part of me finds strength in knowing that God carefully fashioned my children and that He doesn't consider the unbalanced translocation as a mistake.  My heart finds rest in His strength and in knowing that He is the Potter, carefully crafting their futures, smoothing the hard edges and perfecting them for His glory.  If Psalm 24 says that God is the God of hosts and the King of Glory, then He knows how to lead my children and myself to the life He wants for us.  Psalm 24:1- The earth is the Lord's, and the fullness thereof; the world, and they that dwell therein.

My babies

Their mouths may have low muscle tone, but they sure look cute!