Year 2: The Roller Coaster Ride

Our second year with Anjali was amazing and hard. One thing for sure, Anjali is without a doubt one of the bravest people I have ever met.She continues to carry herself with an infectious joy and excitement despite all that she has been through. It reminds me how lucky we are that this beautiful little girl is ours. Raising her has not been hard, but watching her suffer through the unexpected pain and sickness that this year brought has probably been one of the most difficult things we have had to do.When your child is sick and suffering, all you want to do is take all the pain for them. As I write this post, Anjali is attending her first day of kindergarten which is a huge win for our family, but reflecting on this past year begins in August 2016 where she was making huge improvements in her recovery from her major surgeries in the spring of 2016 and starting school for the very first time.

August 2016

 This month started with a nice family getaway at the Outerbanks.We stayed at a fisherman's house in Hatteras from August 6th-13th.It was a much needed relaxing time where we alternated between lounging at the beach house, going to the beach and going kayaking. It was Anjali's first real trip swimming at the beach and she had a blast. She loved playing in the waves, building sand castles and collecting sea shells. Anjali was able to try out some of her new found swimming skills she had learned in swimming lessons this summer. We got to take a Ferry to Ocracoke and she got to hang out at a bar and listen to live music and the band leader even gave her a CD. When we got back from our trip, there was only a week left until school started. Her recovery was going well. Her appetite was improving and she was making a lot of progress with her physical strength with the help of her physical therapist, Abby at Abilitations. I was nervous, but also very excited to have her start at Arts Together, a very special preschool that has been a wonderful start to her school education.The school focuses on the creative arts and students attend dance, drama, and art classes daily. I met with the preschool director and lead teacher before school and they were wonderful about getting to know Anjali and being sensitive to her needs. I knew that Anjali would be just fine after meeting with them. She was so happy to begin school.

September 2016

September involved establishing comfortable routines and enjoying life together as a family. The funnest thing we did in September was to attend the Family Services Picnic and go to the National Folk Festival in Greensboro. The picnic was sponsored by Family Services who is the local adoption agency who helped us with our adoption. It was neat to see families who we met during trainings and to see their children. It was also wonderful to introduce Anjali to all the people who helped with her adoption. We headed to the Folk Festival after the picnic not really knowing what to expect and were pleasantly surprised by the diversity of music showcased and all the hands on activities for kids. Anjali danced so much. It was great to see her so active and happy. Highlights included a Trinidadian carnival parade, jump roping crews and of course the headliner, Grandmaster Flash.  We also went on our very first camping trip.  We went close by to Falls of Neuse.  Anjali loved it.  She is a true camper.

October 2016

There was a lot of excitement in October with a planned trip to Albuquerque for the Balloon Festival for Grandma Pixie's birthday.  It was a fabulous trip.  Anjali had a lot of fun with all the family especially her cousins Gemma and Giselle and the Balloon Festival was incredibly fun.  Of course, the highlight was riding in a hot air balloon which was simply spectacular and not at all scary.  We made it to Santa Fe for a day as well and the highlight for Anjali was getting turquoise jewelry from a local vendor.  Then, of course, there was Halloween.  At Arts Together, the students got their pictures taken in their Halloween costumes by a professional photographer from New York.  Anjali was a beautiful peacock.  Her photos were absolutely stunning and she got lots of compliments Halloween night.  Anjali's second Halloween was a big success!  October marked 1 year in the U.S.  for Anjali.

November 2016

November started out with a Anjali's first trip to the voting booths.  It wasn't exactly the best lesson in your vote counts, but an important step for Anjali as a citizen of the US.  Anjali also had a big Thanksgiving  Stone Soup celebration at her school.  The kids made their own placemats, headbands, name cards and clay pots.  It was our first time getting to come to her school and meet all of her classmates and celebrate the Fall season.  Then we headed to Las Vegas for Thanksgiving and Anjali got to meet the newest member of the family, Sheba, her Aji and Ajoba's new dog.  We had a wonderful  time preparing and sharing our Thanksgiving meal.  It was nice to relax in Las Vegas.  We took many trips to the playground and headed up to Red Rock canyon where Anjali impressed us all with her rock climbing skills.

December 2016

December is always marked with the excitement of Christmas for sweet Anjali.  She was very focused on what Santa might bring her.  Anjali had her first stage experience in the Christmas pageant at the Church of the Good Shephard where she was an absolutely adorable angel.  Then there was a lot of excitement at her preschool as the children prepared for their first production, The Muttcracker.  It was super cute production and Anjali had several roles where she showed off her dancing skills.  Here's a link to one of her dances:  https://photos.app.goo.gl/8XPFMo0PNM8nrJrn2 
Adam was in a bad car accident a day before the production which scared all of us, but he still made it to see her perform the following day. We had a low key, but enjoyable Christmas holiday. Adam rested a lot and Anjali was excited to get her first doll house as well as a lunch box and T ball set from Santa.  Here's another video of her bringing in the Christmas cheer with her ukelele.

January 2017

January is when things started getting difficult.  It was clear that Adam was in for a long recovery from his car accident.  Anjali started to have bouts of pain and diarrhea that we could not explain.  Anjali's pediatrician wrote it off as a stomach bug, but she was in a lot of pain.  Anjali got a nice, long visit with her Nana this month.   She attended her first protest.  We also submitted our Adoption Dossier for a second child.  Anjali is extremely excited about getting a brother, though it will probably be a lot longer than she expects.  The weather was chilly and we got our first snow/ice storm.  Anjali had fun sledding at various spots in the neighborhood.  

February 2017

Anjali got to make Valentine's Day cards and celebrate with her classmates at Arts Together.  She made beautiful valentines for all of her classmates with Nana and she had fun sharing them and receiving valentines from her classmates.  Here's a video of them singing a Valentine's day song.  She had good and bad days, but we still had no answers to her pain.  When she was feeling good we tried to squeeze in playdates with her friends.  We had lots of long nights with worry and crying.  Most of the month we spent laying low, hoping the rest would help her get better.

March 2017

March brought the excitement of Anjali's 5th birthday.  She had in mind that she wanted an easel and a watch.  We planned a birthday party at Marbles. Also this month Art Walk happened at her school where the students showcased their art work.  Anjali made a delightful vegetable garden and of course, there was the full size drawing of her.  She missed a lot of school and finally the evening of the Art Walk we realized enough was enough and took her to the emergency room at Duke.  Unfortunately, that was also the week of her planned birthday party at Marbles.  We had to postpone it, though we did change gears and have a nice celebration at the hospital.  Both the doctors and nurses sang Happy Birthday to her.  Her classmates sent her this beautiful video. By Friday it was clear we needed to go to Johns Hopkins.  After spending a week there that included 5 hours in the operating room, it was confirmed she had a blocked urethra that led to a  kidney infection.  Unfortunately, even after the diagnosis she was still in a lot of pain.

April 2017

We started April on a hopeful note.  All of her friends at Arts Together were so supportive.  She received cards and gifts and videos.  The school raised money for us and even discounted our tuition.  When we stopped by the school to see everybody, all of her classmates got up and surrounded her and gave her a big group hug.  It was such a beautiful sight for a mother.  She made so many nice friends at the school.  Anjali ended up back in the hospital right before Easter, but luckily we were able to get out the Friday before and enjoy Easter at home.  Anjali got a big basket and we did a backyard Easter egg hunt.  We also had a lovely brunch in the backyard.  It was a beautiful, good day for Anjali.  Also in April we got to go on a camping trip up in the mountains for Adam's birthday. It was just a quick weekend trip, but a calm and relaxing time for us as a family. Anjali against all odds started ukelele lessons this month.  She took them with a sweet French girl named Emily at Notasium.  Emily was a little more advanced than Anjali and we got to see her perform at the Spring recital which was motivation for Anjali. Here is a video of them playing together.  Arts Together had a fun field day where all the kids and teachers got to play.  It was great to see everybody.

May 2017

We were determined to make it through to Anjali's rescheduled birthday party, but the months of Anjali's pain had taken its toll on all of us.  She had a really great birthday party (Happy birthday video) at Marbles with her friends then the next day we were back at the emergency room and Anjali was really sick. We got home just in time for Mother's day.  We had a lovely brunch outside on our deck and then went for a family bike ride to the Falls of Neuse River.  It was seriously the best Mother's Day ever.  She had a fun day of strawberry picking with her friends.  May also marked the end of preschool for Anjali.  They did a big end of the year performance where Anjali was a pirate and a mermaid and combined it with preschool graduation.  Anjali informed us during this week that she was marrying her dance partner Mac Cousteau.  She  also lost her first tooth and was introduced to the tooth fairy.   The end of the year performance was wonderful!  I was so happy to see Anjali perform and have fun and graduate.  A big success for us all. Anjali grew so much at Arts Together this year.  It was the perfect place for her to thrive, to be creative, make friends and to start to learn the routines of school.

June 2017

This month involved several trips to Baltimore and Philadelphia. Anjali finally got her urethra unblocked early in June. Grandparents Papi and Pixie came to Baltimore for a couple of days for extra support.  The surgery went smoothly and quickly. Anjali's pain went away, though there was discomfort associated with two tubes coming out of her. There was a big party at the Ronald Donald's House on the day Anjali was released from surgery and she was certain the party was in her honor.  The following morning, we headed up to Philadelphia for the Association for Bladder Exstrophy conference. Anjali got to spend the day with kids with her condition and we were able to learn from doctors, parents and adults with Bladder Exstrophy. It was a wonderful two days. We came back and got to celebrate my birthday and Father's day.  Aji, Ajoba and Sheba all came out for the occasion and made it all the more festive and special.  Then we went back to Philadelphia at the end of the month for a second opinion at the Children's Hospital of Philadelphia. We got to go to visit the Magic Garden, a mosaic museum built by a local Philly resident and walk around Philly a bit. It's a neat city with lots of culture, great architecture and interesting people watching. We then headed back to Baltimore for the annual Johns Hopkins Picnic. Anjali again got to hang out with kids with her condition while we learned from the Johns Hopkins bladder exstrophy community.It was a good few days where we were able to compare the programs in Philadelphia and Baltimore and learn a lot.  She also got to continue her ukelele lessons, this time with her good friend Mia B (video ).

July 2017

We spent most of this month hospitalized in Baltimore.  Though it is important to note Anjali was the healthiest she had been all year.  It just took longer than expected to get all the pieces in place.  The tubes were out, but Anjali had to get comfortable with cathing twice a day which was scary for her at first.  We worked with a wonderful behavior psychologist at the Kennedy Krieger Institute.  Anjali also got to ride in an ambulance from Johns Hopkins to Kennedy Krieger which she thought was pretty cool.  We did also have some fun in Baltimore.  We went to the National Aquarium.  Anjali got to go on a pirate ship (video) in the harbor and we had fun exploring the science museum and the Visionary museum.  We made it home from the hospital just in time for our two year celebration as a family.  We had a nice brunch at a restaurant called Mandolin.  Then we headed to Seattle for a vacation with Anjali's grandparents, Papi and Pixie which was definitely the highlight of the summer for Anjali.  She got to hang out with her cousins Gemma and Giselle and her favorite aunt, Aunty Tata, and meet relatives who had not met her yet.  There was of course, the obligatory trip to Pikes place and Seattle center and then Anjali and family took off to Gig harbor where she got to go whale watching and pick lavender at a Lavender farm.  Her grandmother Pixie made this beautiful video about the trip.  Unfortunately, our dear sweet Leela, passed away during the vacation.  Anjali will miss her first dog very much and was saddened by the loss when she came back from vacation.  Anjali's health by the end of July continued to be at its best and we are hopeful the most difficult, painful days of this year are behind us.

Our second year together definitely held its challenges, but we grew stronger together as a family.  When I think about how much Anjali grew this year as a person and pushed forward despite the setbacks, I continue to be amazed and inspired by this spirited, beautiful, bright,  joyful daughter of mine. Hopefully, this upcoming year will bring us rest, good health, peace of mind, and if all goes well a new member of the family!

Firecrackers and a Ferris Wheel

It seems fitting that the month that marks our one year together as a family is July.  Anjali got to experience her final big American holiday, 4th of July and we were able to celebrate in a low key way that was a lot of fun.  Anjali and her papa started the day by building a White House cookie house that I purchased from Trader Joe's.  It was a nice hands on activity that they both enjoyed.  Next it was down the street for the kids parade where the kids in our neighborhood got to decorate their bikes, scooters or strollers and parade down the street to Mordecai Mini Park where sno cones and a cotton candy and popcorn machine were waiting for the kids.  Anjali got her first taste of cotton candy and sno cones and went on the swings for a while.  We then headed home and put some hot dogs and hamburgers on the grill and had a proper Fourth of July picnic out on our front porch.   The highlight of the holiday was lighting sparklers and small firecrackers in the front yard.  Anjali squeeled with joy as she moved the sparklers in big circles and 'oohhed' and 'aahhed' as the small fireworks went off.

July was a month of healing and baby steps forward and regression.   Anjali was dealing with a lot emotionally and physically and it was often hard to know what was the source of pain and upset that she experienced on a daily basis.  She had night terrors at night, slept a lot--some days, all day and had very little appetite.  Luckily there were plenty of successes and happy moments as well.  Anjali went to her first camp--cooking camp at Marbles museum for a week.  She had a blast and made pizza, mashed potatoes, and pancakes to name a few of the creations.  It was a good way to give Anjali a chance at independence away from her parents.  She loves Marbles and after the first two days, she was eager to have me go away so she could be with her camp buddies and teachers.  Another thing that was really helpful was that we joined Lifetime Fitness in North Raleigh.  It has a nice pool and kids academy that includes Mommy and me classes.  We started off by spending short bursts of time at the pool and showed up for Mommy and me classes like Art and Crafts, Yoga and gymnastics.  Next, I left her alone in the toddler section for short periods of time and then when she told me she was ready to play with the big kids, she was moved to the open play area and also began taking kids academy classes while I got a break and a workout in the gym.  Anjali also got to go to her first American birthday party that was not her own.  She learned the important lesson that you do not just get presents, but you give others presents as well.    She got to ride a pony at the party for the first time.  Anjali also began swim lessons and continued with physical therapy.  Every day she got a little bit stronger.  Getting strong and healthy was our family motto for the summer as the year had definitely taken its toll on all of us, but absolutely no regrets.

We celebrated our one year together on July 23rd by riding our bikes to the Destination Dix Festival.  It was a really hot summer day and when we arrived we didn't think Anjali would last long, but she surprised us.   We found lots of shady spots and refreshing Italian ice.  There was an exhibition of city trucks and Anjali enjoyed climbing in the fire truck and bulldozer.  The highlight was definitely going on the ferris wheel together.  We had to wait in line for about an 45 minutes, but it's something every American kid needs to do at least once.  Anjali doesn't yet know about Disneyland or amusement parks, so this was pretty exciting for her.  We finished the day by getting some surprisingly delicious Food Truck food, I got a Korean BBQ bowl and Adam got fish and chips.  I expected Anjali to like the rice bowl, but it was the fish and chips that she loved.  After dinner, we just rolled around in the grass for a while and cherished being a family together.

As I write this last post, it is the end of August and Anjali has just finished her first week of preschool at Arts Together.  She loves it!!  Being an educator, the start of the school is always the beginning of the year rather than January for me.  And it really is the start of a new chapter in our lives as a family of three.  This first year together was an emotional and physical roller coaster for our little family.  I am amazed when I think of all that Anjali has been through and what a strong, resilient, joyful child she remains even through the many struggles her life has brought her thus far.  We are settling into a new normal now filled with gratitude and love.  We are so honored to be Anjali parents and filled with joy and pride each day as we watch her grow and live life with the sense of excitement and curiosity that makes Anjali so special.  I hope some day Anjali will read this and recall the wonderful memories and even the challenges that shaped our family and Anjali during this first year together. Most of all I hope she knows how deeply she is loved by her family and that we will alway be here to support her.  I hope she is always proud of where she comes from and what she has been through, and will use it as a source of strength through out her life.  We love you, Anjali. 

Going home again

Anjali was discharged from the hospital on June 1st and we were so relieved.  We packed up everything in Anjali's hospital room and made arrangements to get her a wheelchair to head out to the car.  I can't tell you how happy we were!  It was bittersweet for Anjali.  She was definitely ready to go, but there is a certain amount of comfort and protection she felt in the hospital and the real world out there was a bit over stimulating and scary after being there for two months.

When we got back to the Ronald McDonald House, Anjali rang the good news bell but was a bit stunned when a throng of people came out to inquire what the good news was.  We scheduled our plane tickets home and held our breath.  Adam arrived one last Friday to take us home, but then Anjali got a fever of 102, and by the time we got to the emergency room at 11pm it was at 104 and not much later we realized we wouldn't be making the trip home the following day.  It was the low point for me.  I was devastated and worried.  It would be at least 48 hours before we would get any conclusive results about what was wrong.  Luckily, it turned out to be a minor infection and we were released again on the 7th.  We booked tickets home the following day.  We all just really felt that we needed to get home.

And what a relief it was to be home! My parents were such a big help with the transition back to home.  It felt so good for all of us to be there together with the long hospital stay behind us.  Anjali especially seemed to thrive being in the familiar surroundings of home.  We quickly got her back to her favorite place, Marbles, where she could play her little heart out.

We spent much of June in the safe comfort of home taking each day as it came.  Anjali had both good and bad days and took many naps throughout the day.  She started going to physical therapy at Abilitations, which helped tremendously.  Her therapist Holly was wonderful and she loved going and tried hard for Holly.  

Another milestone this month for Anjali was going to her first movie at a movie theater.  I decided to take her to see Finding Dory.  I took her to an IMAX theater, but didn't realize it was also 3D.  Anjali sat through the hole movie and enjoyed it.  Unfortunately, she was so excited about the 3D glasses that she threw off her prescription glasses somewhere on the theater floor.  We spent about 30 minutes after the movie trying to find them to no avail.  She was very upset about losing her glasses, but loved the movie.

We were all beginning to rejuvenate after a challenging hospital stay, so glad to have this most difficult period of our lives behind us and looking forward to returning to somewhat of a normalcy at least our new normalcy as a family of three.

Mother's Day Blues

I wish I could say things got easier in May.  With Anjali's two major surgeries out of the way, we really hoped that Anjali would be on the road to recovery, but a week into May, Anjali seemed to be getting worse and worse.  Although mostly sleeping, she seemed pained and was losing a lot of weight.  Adam's mother left on the Saturday before Mother's Day and my parents arrived that evening.  They were anxious to see her and I had to relay my feelings to them that she was not doing so well to prepare them for the visit.

We visited her that night and I went back to the Ronald McDonald house for a much needed rest from a stressful week at the hospital.  I was looking forward to spending my first Mother's Day with Anjali and my mother.  But then I got a call first thing in the morning from Adam letting me know that they found an infection in the wound site and Anjali would be getting emergency surgery at noon.  My heart dropped. 

The director of the Ronald McDonald house and her family had a wonderful breakfast prepared for all the residents.  It was very touching, but my mother and I could hardly eat as we dreaded the unknowns of knowing Anjali would go back to the operating room.

Anjali's surgery went well.  Dr. Gearheart operated on her.  She had to go back to the operating room 4 more times to keep the wound clean.  From there, the process of recovery started to happen.  And she truly did seem to get better and stronger each day.   There were daily challenges and frustrations, but we were definitely acclimated to life at Johns Hopkins.  During the last week of May, Anjali was allowed to get out of the hospital bed and I was able to hold her in my arms.  It felt so good to hold her again.

What really made all the difference was having family support throughout the whole process.  My parents were there every day to lift my and Anjali's spirits and give me breaks from staying at the hospital.  They were always so positive through it all.  Anjali's other grandparents Papi and Pixie also came to visit and they were so wonderful at spending time with Anjali and their eagerness to help in anyway they could was simply heartwarming.  We are so lucky to have the loving, supportive family that we do.  They have given so much to help Anjali and start her off on the right foot.

We were all so ready to go home at the end of the month.  The end was within sight.  It was hard to believe that this challenge was almost behind us.  Anjali was so excited about the prospect of going back to her blue house in Raleigh and so was I.

Baltimore Beginnings

There is no easy way to prepare yourself or your daughter for a two month hospital stay, but we did the best we could the first week in April.  After a wonderful trip in California, Anjali was in good spirits.  We read Curious George Goes to the Hospital or  Franklin Goes to the Hospital almost every night and talked about going to the hospital.  We played hospital where Anjali performed surgery on her dolls and planned out what toys, books and clothes she would take with her.

We drove to Baltimore on April 10th and settled into our room at the Ronald McDonald house.  It was then that it truly sunk in that it was really going to happen and it was tough.  As her mother, I knew that this was the best thing for her and so grateful to be able to take Anjali to see the top surgeons in the world for her condition, but honestly, I just wanted this difficult period to hurry up and be over.  We had a couple of days to enjoy Baltimore before her surgeries.  The highlight for Anjali was going to Port Discovery, a children's museum where she enjoyed playing in the many exhibits.

The Children's Center at Johns Hopkins is world class and  we knew Anjali was in care of the most skilled hands around with surgeons Dr. Gearheart, Dr. DiCarlo and Dr. Sponseller.  Everyone at JHH was  very good at what they did and that was a huge relief.  I never imagined that there would be so many different people involved to give Anjali the best care possible--nurses, IV techs, child life specialists, hospitalists, pain management specialists, physical therapists, and nutritionists are just a few of the wonderful people that helped Anjali during her stay.  The tricky part was knowing who to ask what to and dealing with such a large stream of people coming through our room.

I thought Anjali's first surgery an osteotomy performed by Dr. Sponseller would be the most difficult, but it turned out to be pretty straightforward.  Anjali handled it all so well and was in pretty good spirits.  She was able to sit up and even got to get out of her room a couple of days in a wheelchair.  We went to the goldfish pond and to the children's library.  What was most overwhelming was getting used to life in the hospital and trying to figure out ways to best help Anjali.  The bladder closure surgery performed by Dr. DiCarlo and Dr. Gearheart which took place 2.5 weeks after the osteotomy was the far more complex procedure and much harder on Anjali. 

Luckily, I was able to basically stay with Anjali in her room.  Adam came up every Friday and stayed for the weekend.  We were also blessed to have Adam's mother come up for the first month to help us out.  She made a beautiful felt basket and flowers for Anjali.  Each day, Anjali looked forward to picking a new flower and adding it to her basket.  Little things like that were the most important in getting us through this difficult time.  Finding distractions and things that lifted her and our spirits was a daily challenge.  Anjali was a champ through it all. She handled it all much better than I would have! She is truly an inspiration and such a strong little girl.