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A Beautiful Life - By Katie Rice

Posted by Tammy Dalton on

Today, September 30, is Microcephaly Awareness Day.  Today is a day to honor a little girl that we at Adorable Essentials know and love, sweet Ansley Claire.  And so, we've invited her mom, Katie, to come and share their family's beautiful story:

 

One Sunday morning, I was sitting in Church with my grandparents and I leaned over to my grandma and pointed at this boy (who I now know as Ben) and whispered to my Nanny "I'm going to marry him."

Ben and I met in High School on a Missions Trip to Mexico.  My good friend was dating Ben's brother. I told her I HAD to meet him.  We met, fell in love and the rest is history. Giggle.

 

 

We dated the majority of our high school years. After I graduated, Ben and I KNEW we were ready to get married. Ben popped the question in August of 2006, and in June of 2007 we were Hitched!

 

 

We decided early on in our Marriage that we wanted to start a family pretty soon.  I knew I would have some troubles, as I don't have very many periods (1-2/year). So we decided in 2008 to try and start a family.

After about 6months of "trying" (giggle!) we sought help thru my OB, who then immediately sent me to a Reproductive Endocrinologist for further testing. I was diagnosed with PolyCystic Ovarian Syndrome (PCOS). Basically, my body holds onto sugar 7x longer than it should. It then creates too much insulin, which creates little cysts on my ovaries. My cysts were covered. The first RE told me "don't even try, you will never get pregnant." The second was more optimistic "You will be pregnant in 6 months, I guarantee it." So we were SO excited. Pumped!  I mean, we were going to be pregnant in 6 months!!!

Well, 6 months came and went. Then a year, then 2 years...then 3. We tried all sorts of things to boost me up, but it didn't work. I would occasionally ask Ben what he thought about Adoption and he said it wasn't for him. So I would drop it.

 

 

I prayed and prayed that God would either give me a miracle pregnancy or change Ben's mind. One afternoon, Ben came home and started talking about Adoption. I pulled out my secret folder of information I had been gathering. So we went thru all of our training, got our Home Study and waited. We then found out about a little boy who had Cerebral Palsy (God was working on us!!!) and we thought he was the ONE; God had other plans. We sent our Home Study to every agency/attorney in Florida.

 


One afternoon I got a call from a local Agency that said they may have a Birthmom for us.  I immediately called Ben and our family and asked them to pray. She asked us to get them our "LifeBook" we made so she could present it to the Birthmom the next day along with 5 other families. Needless to say, it was a very restless night. The next day we got the call saying the Birthmom CHOSE US!!!!!! Agh!!!!!!!

 


 

We then went thru the Pregnancy along with her (and Case workers/Attorney).  She was in jail the majority of the time, so we only met her once, the week before her planned C-section. We set up our Nursery, got everything prepared, had a baby shower, packed the diaper bag.

March 25th came and we were so excited. Ben, myself and our families headed out to the Hospital at 5 A.M. for C-section day. We couldn't believe THIS was the day we were starting a family. We were SOOOOO excited. So ready.

The C-section was scheduled for 7:30, so we knew we should hear something 30mins-1 hr later. An hour went by, then 2. We thought maybe she was still saying goodbye. Then a Nurse came out and got our Case Worker. We knew something was wrong. The Case Worker came back and said the BM changed her mind (I literally can't stop crying even writing this!).

 

 

We fell. Hard. I ran into the restroom just to have a moment by myself. I sobbed. I was in shock. Our Case Worker told us to stay in the area in case she changed her mind, so we stayed in the area for the day.  At one point, I told Ben "it's time to go home".

When we walked in the house, it was like running into a brick wall. We had everything out, thinking we were walking in with a baby. My mom, grandma and Ben immediately went to packing everything up, putting it in the Nursery and shutting the door. Some sweet friends sent us to Orlando for a few days just to get away, which was so so needed. It allowed us to grieve. Allowed us to escape.

Four months later, we got a call from our Attorney saying BM was on her way with Baby Girl. I was SHOCKED.  I was on vacation from work that week, so I immediately called Ben and told him to COME HOME.  I called all our families and asked them to fervently PRAY.  We got to our Attorney's office and the BM handed me my Ansley.  My baby.  My girl.  She was so skinny, so frail, screaming her little head off.  I was sobbing.  I snuggled her and she snuggled right in and fell asleep. My heart was so full.  I looked at Ben and he beamed with pride.

 

 

We took her home and did alot of "skin to skin", snuggles, bathing, and crying. Boy did we cry. Our families came over and snuggled, loved and cried. It was such a joyous occassion. We couldn't stop thanking God.  We held and loved on her all night (well...we still haven't stopped, grin!).

Within 2 days we had found a Pediatrician and took her to get her looked at. The first thing they asked us was "do you know she's retarded? Are you sure you want to adopt a handicapped child?" We were stunned. What?! We knew she was frail and unhealthy, but she was perfect. They sent us to Wolfsons and Nemours for testing. We learned she had Microcephaly (Abnormally small head due to little to no brain development), and that she would be delayed. We had no idea to what extent.

Within the next few weeks we were in and out of Specialists getting testing done. We then noticed she was having infantile spasms (seizures) and she was sent to Wolfsons. This is where they did the MRI and found she had Lissencephaly, which often goes with Microcephaly (which is why it's often referred to as MicroLissencephaly). They told us that she was categorized as "moderately severe", that she would never surpass the 3-5 month level, that she would never crawl/sit/walk/talk. We were overwhelmed to say the least. But we also had Hope. Hope that only our God could provide. We knew she was created perfectly in HIS image. We knew he made no mistake. We knew this was our baby so we loved her just the same.

 

We then noticed she was never opening up her eyes, we thought she was sleeping as she adjusted. We were referred to an Opthahmologist where we learned Ansley was visually impaired. She was diagnosed with Cortical Visiual Impairment (disease of the eye) and Optic Nerve Hypoplasia (her nerve from eye to brain is very thin). ***She has improved drastically with keeping her eyes open and working on focusing them now. Hallelujah!!!***
We started Ansley in Occupational, Physical, Vision and Speech Therapies. They referred us to a Spasticity Clinic, because she was just so stiff. We then learned she had Cerebral Palsy (Spastic Quadriplegia), which is another disorder of the brain. Since then, we have been hospitalized numerous times, 2 procedures and more doctors than we can count. She had a Gtube placed for feeding (due to the neurological disorders she has no hunger cues, and can't coordinate the suck swallow), a nissen fundoplication placed (prevent throwing up all her feeds). The procedures were so, so scary for us but have been life savers. Literally.
We serve a BIG God.  One who gives us peace, comfort and guidance.  One who loves us thru our fears and doubts.
I remember when we were in the hospital for 2.5 weeks with Ansley, getting her G-tube, Tammy (owner of Adorable Essentials) reached out and asked if she could send Ansley a few things from her company.  I thought that was just the sweetest.  Well, when we got home from our hospital stay, I was BLOWN AWAY at her generosity.  I couldn't believe it.  All the ruffles galore!  It's like she knew my Fancy girl.  We were so thankful and humbled.  From then on, we were in LOVE with Adorable Essentials and Tammy.  She really has the sweetest heart.  We have since gotten to know Heather, Adelyn and Laura, who are equally as awesome.
Then, Tammy announced they were teaming up with the "Changing the Face of Beauty" campaign, and I was ecstatic!  My favorite brand was promoting something near and dear to us.  The campaign is all about showing love to EVERYONE, with and without disabilities.  They promote using people with disabilities (visible and non-visible) in advertising.  It's such a neat campaign.  We are thrilled to be a part of something so awesome.  To show that our little divas can still rock a runway, rock modeling and rock some fancy clothes!!!  We are so thankful for AE and for CTFOB for promoting our sweet girl, our sweet Ansley.  She truly is created PERFECTLY in God's image.  She's our precious.  Our Fancy.  Our Heart.
 

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