Thursday, April 20, 2017

Happy Birthday, Leah

April 20th has become a day that I anticipate with dread and excitement. It’s a strange feeling to both love and hate a day, especially the day of your child’s birth. I mean, it’s a day; not a person who was mean to me and hurt my feelings, or a friend who did something really thoughtful and made my day. One day out of 365 in a year, and yet… this day has such significance in my life that I can almost feel it coming. It should have been a day that was filled with joy and wonderment, and it was, but it’s also a day of grief and pain. As we celebrate another year of Leah’s presence, accomplishments, and happiness, we grieve another year of milestones not reached, goals not met, and dreams that haven't come true. It’s hard not to think about what an 8 year old should be doing and compare that to Leah.  It’s hard not to be overcome with emotion. It’s hard to watch your child struggle with every day life things. It’s hard to not be planning a party for a child who doesn’t have friends, doesn’t care about parties or presents, and doesn’t like to eat cake. It’s hard to explain to your other children why we are not having a birthday party for Leah, but why we celebrate her anyway. It’s hard to admit that being Leah’s mom makes me sad sometimes.  Some days it is easier to be the mother of a child with significant disabilities, but today is not one of them. It is not easy, but today I choose thankfulness. Today, I am thankful for three healthy children. Today, I am thankful for grandparents to be with us to celebrate and pick up the ice cream that Leah will eat. Today, I am thankful for friends and family who sit with me in my grief, who pray with me and for me, and who direct my gaze back up. Today, I am thankful for my eternal hope, one day everything will be perfect. Today, I am thankful for a Savior who also grieved, and who will one day wipe away all tears. Today, I am thankful for a Sovereign God, who shows me that He is providentially at work in our lives, for our good and His glory. Today, I am thankful for Leah, my child, made in the image of God, one of His prized possessions, my girl, whom I love more than my own life. Happy 8th Birthday, Leah.

Happy BIRTHday, Leah!

Happy 8th Birthday, Leah!

Monday, September 22, 2014

Micah is 2 Months Old!

Our Micah Boy is two months old, and it has been two months of change! In addition to the obvious differences of having a boy (different anatomy ;), different pronouns), Micah has proven to be very different from his sisters. He is a loud baby, almost constantly grunting, groaning, snoring, cooing, crying, some sort of sound! It makes it quite difficult to sleep soundly (in between nursing). Speaking of nursing, he nurses way more than the girls ever did. Not only does he nurse more frequently than they did, he nurses for a longer time than they did. While the girls nursed quickly and were done, he nurses a little, takes a break, and nurses more. We haven't had his two month check-up yet, but we know he is becoming quite the chunky boy from all that nursing! He is still the delight of Rebekah. She just loves him and loves to love on him (a little too much!). And Leah likes to touch his feet and mimic his cries. Everyday he is becoming more and more alert, making eye contact more, smiling a lot, and cooing, too! We are loving getting to know our precious boy!


Tuesday, September 16, 2014

Leah's Big Summer

Leah girl has had a big summer! It all started with finishing preschool.  Our girl spent two years at Easton Preschool, growing and developing, and I can't tell you how much we loved having her there. Easton is just one piece of the evidence of God's sovereignty in placing us in Norfolk. And this year she had an amazing teacher, Ms. Liane, who possesses the best attributes a teacher can have: kind and encouraging, innovative and experienced, and a great communicator who loves our girl. We feel so blessed to have had her for Leah's last year of preschool. We will miss Easton and Ms. Liane, but are so ready for kindergarten and a new school!
Each class got to perform a special song on the stage for the "moving on" ceremony.
Leah with Ms. Liane and Ms. Robin (the teacher's aide).

Summer is usually a difficult time for Leah. She really needs the structure and routine of school, which is something that is hard for Mommy to keep up for her. It was especially hard this summer, having a toddling little sister and a very pregnant mommy to try to coordinate along with our special girl! However, we managed to go and do something fun out of the house everyday, whether that was a trip to the zoo, the mall, the botanical garden, the museum, the downtown splash park, our neighborhood park, or our backyard. Daddy was especially helpful this summer. He made sure to be available to go with us whenever we left the house. And our Leah girl had the best summer she's had in years. We did not have nearly as many meltdowns as we normally do. We even went some days without a single tantrum!
Enjoying the summer sun in our backyard

Leah also had her annual check up in Iowa with both of her ophthalmologists. As I was almost 38 weeks pregnant, only Stephen and Leah went to these appointments. They had a special trip planned, flying together to Iowa, staying in a fun hotel with a big pool slide, going to her appointments, and flying back home to Mommy and Rebekah (or so they thought...). The trip started off as planned. They drove to D.C. (a three hour drive) to have a better chance of getting on a flight as stand by passengers and flew to Chicago, where they rented a car and drove the rest of the way to Iowa (about a 4 hour drive).  Leah is usually a great traveler, but she is so unpredictable and when she gets set off, its very difficult to calm her down. So, we decided to limit the amount of time on a plane. One of the hard things with having an almost nonverbal child is that we have to guess why she is upset, which can be hard to do. And being on a plane with nowhere to take a 5 year old who is having a tantrum can be stressful, to say the least. So, Stephen explained to the flight attendants about Leah, gave her tons of snacks to keep her occupied, and prayed for the best. And our girl did great!
Ready for take off!
Leah's annual check up in Iowa was with 2 different ophthalmologists: Dr. Wilkinson, who is in charge of functional vision (using the vision she has as best as she can) and Dr. Stone, who is a molecular ophthalmologist and geneticist, in charge of defining how her chromosomal translocation has impacted her development and what it means for her future. We found out last year, that Leah has a chromosomal translocation, meaning that two of her chromosome pairs exchanged segments. We also learned that this event is isolated to Leah and that it is believed to be the underlying reason for all of her disabilities. However, they have been unable to prove that, up to this point, so we have a new plan. During this visit, some of Leah's skin cells were removed in order to grow stem cells to see what they can learn about the underlying dysfunction of her retinas and brain. Crazy stuff! We are also sending them Leah's latest MRI images, so that they can look at her brain and see if they can learn anything from that. So, we know what is different about Leah, genetically speaking, and we assume that those genetic anomolies are the reason for her disabilities, and we are working on proving that theory. We also know that there is no reports of anyone else having this same translocation, which means, we can't compare or get an idea of Leah's future. We know that Leah has been fearfully and wonderfully made, and that God has led us to these wonderful doctors to find answers. Now, we just trust and wait on the Lord, knowing that He loves us and will be glorified in Leah's life.
Taking the visual acuity exam

They made some time for fun, while on their trip. And after a somewhat traumatic appointment (getting a skin biopsy is no fun!), Stephen and Leah tried their hardest to get home before Micah was born. Click here for that story!
Special dinner at a fancy restaurant in Washington, D.C.
Leah loved the big water slide at the hotel pool!
The final big event of the summer for Leah is the start of kindergarten! It's hard to believe that our little girl is going to elementary school! In some ways, it's not that big of a deal, though. I mean, she has been going to school for the last 2 years and riding the school bus both years. But, there is something different about being in kindergarten. Leah will get to go to resource (PE, art, music, and media), she has a daily behavior chart (which has had all happy faces all week long!), and if she misses school, we have to write a note. Leah will work on goals developed at her IEP (Individual Education Plan) meeting at the end of the last school year. These goals include academic goals for reading and math and developmental goals for fine motor and gross motor development as well as communication development. Stephen and I were very involved with creating these goals and are excited to see what Leah accomplishes this year. We are also excited about her new school (both new to her and a new facility) and her new teacher (who seems wonderful), and that her friend, June, is in the same class!
Waiting for the bus!
Ready for a new school year!

Thursday, September 4, 2014

Summer Fun!

This summer has been quite a busy one! Besides having a baby (see the previous post!), we have had a pretty busy and very fun summer. Summer started with our first family camping trip for Father's Day. We drove down to Cape Hatteras National Seashore and camped right on the beach. It was also one of the first opportunities for Stephen to take out his Father's Day present - a kayak! We decided to only spend one night, not wanting to be too crazy for our first camping trip ;). And how did everyone do? Leah slept through the night (helped out by a sleep aid), Bekah woke up several times (totally thrown off by being in the same bed with the whole family), Stephen and Pippin slept like logs, and I tossed and turned the whole night (I was in my third trimester of pregnancy, sleeping on the ground, totally consumed with keeping my girls asleep all night long!). After it was all said and done, I can honestly say it wasn't that bad, and camping is something we will definitely do again... maybe next year!
The girls had a lot of fun playing in the tent.
Bekah's first kayak ride with Daddy.
Outer Banks Beauty
Daddy and his girls at the Cape Hatteras Lighthouse.

Our other major trip was for Fourth of July. We went to Washington, D.C. and to Philadelphia. We spent a couple of days with Sarah and Dustin and the Hanks boys, enjoying their new house, splashing at the Yards park, going to a parade, and a special time for Leah and Daddy to see fireworks on the National Mall. We made a quick stop in Baltimore, at Ft. McHenry, to see the place that inspired Francis Scott Key to write the words to the Star Spangled Banner 200 years ago. Then we went onto Philadelphia to see and learn about some of our Nation's history in the place where the Declaration of Independence was written and signed.
At the Jefferson Memorial
Cousin cuties watching a parade
Listening to a concert before the fireworks start
Our lover of the light celebrating with Daddy on his favorite day of the year
At Ft. McHenry, watching the Star Spangled Banner yet wave o'er the land of the free and the home of the brave

In front of Independence Hall
Waiting for a tour of Independence Hall
Daddy and Bekah at the Liberty Bell
He's got the eye of the tiger!

In the midst of these big events, we managed to find time to have fun in and around Norfolk. We took many trips to the splash park, the zoo and the Virginia Children's Museum, went to lots of free concerts, picked peaches, and had fun right in our own backyard. 
One likes water a little more than the other!
Future vet (?) at the children's museum in Portsmouth
Dancing with Daddy at a concert in Ocean View.
Picking peaches in Chesapeake
A picnic in the backyard
Our very own splash park

Wednesday, September 3, 2014

Micah is Here!

Micah Stephen Burgin was born on July 22, 2014 at 10:33 pm, about an hour and a half before his daddy met him for the first time. What a birth story! My due date was August 6th, and with both of the girls being induced almost a week after their due dates, we were not the least bit worried when Stephen took Leah to Iowa for her annual check up with her ophthalmologists. My mom came to be with me, just in case something happened, but we were planning on a fun girls weekend: making freezer meals, doing some last minute shopping, watching movies, etc. Everything went according to plan until Tuesday morning (2 weeks before my due date!), sometime very early, when I started having contractions. After a couple of hours of somewhat painful contractions (and a couple of other signs of labor), I went to wake mom. As soon as I told her I was having contractions, they stopped. A few hours later, while shopping, the contractions started again. I called Stephen to tell him and he told me to go home and lay down. I did, hoping that would stall labor. These contractions were different from the ones I had before both of my girls' labors, and very similar to the ones I had during both of their labors. After laying on the couch for a few hours, continuing to have contractions that were getting closer and closer and stronger and stronger, I finally admitted I was in labor and decided we needed to have a plan. I called my babysitter to make sure she could come and be with Rebekah, called my dad to tell him to start looking at flights, and called Stephen to tell him to hurry up because I was going to have a baby! I called the doctor, who let me come in, despite the fact that my contractions were only 7 minutes apart, not consistently for an hour yet. I explained to her that I had been laying down for about 5 hours straight and was still progressing and that during my last labor, once my contractions were to about this level, Rebekah had been born within a couple of hours. She agreed that it was a good idea for me to go. Once we made the decision to go in, we kicked it into high gear, packing bags, getting stuff ready for Rebekah and a babysitter, and working on flights to get Stephen in as soon as possible. And, along with all of that activity, my contractions got increasingly more frequent and painful. We made it to the hospital, checked in at about 6:45, and started really laboring. My mom was a great coach. I'm so thankful that we made sure to have her come that weekend! She was comforting and encouraging to me and one of the first people to meet Micah. She even got to cut the cord! I think she will always have a special bond with Micah. And Stephen made it after an adventure of his own! We got them on a flight into Baltimore (to get in earlier) and our brother-in-law, Dustin picked them up and drove them to Reagan National airport, where their car was parked, before they drove home to Norfolk. We'll share their adventure in another blog post. And, now, some pics of baby Micah.
Micah Stephen
First time meeting Daddy
 The little guy, all strapped in.
Ready to go home!
Sweet baby boy
Big feet on a tiny boy!
Welcoming brother home
First bath!
First time being peed on!
 Just the first of many firsts in your life, little Micah! We are so thrilled to have our little boy!

Friday, April 11, 2014

Playing Catch Up...

... I feel like this is what I am constantly doing with the blog. I keep coming up with ideas for ways to keep the blog up to date, but I continually fail.  I can give a list of reasons for why I have not updated this blog in about 5 months, but I am not going to. Instead, I am going to give myself some grace, and finally admit: I am not a good blogger. I want to be, but I'm not. Maybe someday, but not right now. In the meantime, I will give a quick 5 months in review. Here goes:

Leah got cuter.
Bekah got older (11 months).
Leah got to go to her first ODU basketball game.
We had Howell Thanksgiving in Tennessee.
Bekah found out she was going to be a big sister (and wasn't happy about it).
The girls met Santa.
We had our first Christmas in our new home (and Bekah's first Christmas ever!).
Bekah liked all her new toys...
... Leah's toys, too
Leah was able to keep some presents to herself.
We went to South Carolina for Burgin Christmas (the grandkids in age order).
The two youngest got to open Baby Jesus (a family tradition).
Leah got a special present: Baby Kate, her cabbage patch doll.
Bekah turned 1 year old!
She had a special birthday party...
... loved her new baby doll...
... her tea set...
... her farm...
... and her pink cupcake.
It snowed...
... And snowed.
With all the snow, we had to bring the slide into the house
Stephen made a snow angel.
We had lots of fires in our fireplace.
It snowed some more.
We had to start baby proofing.
Baby proofing failed.
We spent Stephen's spring break in Tennessee.
Bekah touched a waterfall.
Stephen tried to fall off of a waterfall.
Bekah met her new best friend - Daniel Tiger.
Mommy snuggled her Leah girl.
Bekah learned how to climb up and slide down all by herself (while no one was looking).
Bekah also learned how to drive.
I reached the mid-point of my pregnancy (20 weeks).
We got to see Baby #3.
It finally got warm enough to go outside and play.
The girls found some audible Easter eggs...
 ... and enjoyed a wagon ride at the beach.
Spring has finally bloomed...
... and we are enjoying all the pretty trees...
... and beautiful flowers.