Stronger (update on Sam)

 This Girl CAN!! 

I can’t even begin to explain the level of pride and disbelief I feel looking at our girl. The last few weeks have brought so much growth, bravery and strength. She has fought through the things that once caused her paralyzing fear and moved forward further than even she thought she could. 

She has gone from a pale shell of herself, frail and thin, to a girl working to get her muscles back.

She is determined and she is ready. She has continued OT and has been doing big things. She even climbed on the play set this week! Jumping and attempting to run. Things her body wouldn’t allow her to do a month ago. She has been walking the stairs using every other foot and even carrying things with her when she walks.

She is so proud each session to show her OT, Sarah, what she can do. Sarah has been blown away at her progress too and said she is ready to add in PT to help. This is a step we hadn’t expected this soon and we are excited to get it started. 

Her appetite is back! She has been requesting snacks between meals and desserts! Tonight I was at Kroger and I actually got tears in my eyes as I grabbed ice cream sandwiches that she had requested. It was only a few weeks ago I was in tears searching the protein content on liquids I could maybe get her to ingest. Knowing nothing I bought would be welcome. 

She is one of the “coaches” now for the basketball team she was originally playing on.

Her coaches are amazing friends who made her feel so welcome and even got her a uniform to wear while she coaches at the games. When I say our village is in the best, this is what I am talking about! 

She asked to play in the snow this week. As we got her ready she looked at me and said, “a few weeks ago I couldn’t have done this, I wouldn’t have been able to play”.

She is right. She could barely walk. But, she put her stuff on and she played in the snow. She pulled her friend on a sled (which is something she does in OT:) she even rode the sleds down a hill. She was so excited to be out there with her friends. 

Her journey is far from over. She has a lot more work to do and months of therapy. FND is something that may flare. She may have setbacks. She may never notice it again. One thing is for sure, she is a fighter!! She is a tough cookie and that sassy part of her has made her work harder and get better.

 This week our girl turns 9. We are so happy to celebrate all of her achievements and every part of who she is! Please keep the prayers coming as we continue this journey. 

Sam I Am 💗

 

I haven’t posted on this blog in years. I kind of forgot I even had it! I have had a few people reach out and I wanted to write this out to let those who care know what has been going on and to have it all documented for myself💗 

  In late November Sam fell and hurt her knee. Not a significant fall or injury. Throughout the following week we noticed she was walking differently and fearful to play volleyball with her team. She also didn’t want to play her beloved soccer. By the end of the next week she was showing signs of weakness in her legs.

 When she spiked a fever during a sleepover and seemed tired the next day we decided to take her to Children’s. While there she had a fever and the on call doctor being an Oncologist was very concerned with how she was presenting. He ran many blood tests and expected to see bad results. As we waited in the waiting room terrified we tried to calm Sam who was completely distraught after having her first ever blood draw. Thank God the bloodwork came back normal. Even surprising the on call doc. We were sent home counting our blessing without any answers, but happy with what had been ruled out. 

Over the following week we noticed she was walking less. She was unable to navigate stairs normally and wouldn’t engage in any activity that required mobility. She stopped playing volleyball and soccer and was sick with worry going to practice even to watch. She struggled to go to school and was constantly afraid of something happening, of falling and hurting herself or being away from home. During this time she also ended up with a stomach bug and got sick at school. We watched our happy silly girl become a shell of herself. She cried morning and night, was afraid of anything and everything. Couldn’t step down the front step from our house and feared walking next door. She struggled getting in and out of the car. She looked frail. We tried to do Christmas things like go to the museum, but she was scared to walk around. Scared of the people, crying and just wanted to go home. Everyday it got worse.  She started talking to the therapist at her pediatrician. She saw her a few times and she suggested having her see an Occupational Therapist as well. 

At the start of Christmas break her fear became paralyzing. She was moving very slow, her body was stiff and the movements she did make were rigid.

She struggled with normal tasks like to get in the bath, off of the toilet, stand up, sit on the ground, bend her legs. She feared standing up at all and walking was incredibly hard to get her to do. When she did walk her gait was so incredibly off.  She had her OT assessment and continued therapy. The days got worse and she was afraid to eat. We spent our days forcing her to eat or drink in small amounts as she feared vomiting If she ate. Anyone who is familiar with ARFID understands how incredibly awful this disorder can be. She was losing strength in her legs and cried from fear off and on all day. We found small moments of joy over Christmas, but it was all consuming for not only Sam, but our whole family. We are so blessed that we are surrounded by people who love us so much. Sis took over Christmas dinner with a days notice. We spent it together and it really was a great day.

The whole season was different than we had expected, but it was the best it could be and we were together.

 Throughout the weeks Sam had a spot she felt safe on, on the couch and we had to make her get up and walk a “lap” to move her legs. She cried to have to get up and we had to help lift her to her feet. Grandma and Papa came over to get her up and talking and played many games of Sorry and Uno. 

 I was in constant contact with her pediatrician. She assured me that physically the doctor had ran every blood test. Thank God I have a dear friend who is a doctor and he was able to assure me and calm me down when my own fear set in. We felt helpless and like we had no direction. 

After a month of not knowing what was happening we were relieved to get a diagnosis. Functional Neurological Disorder (FND) also known as Conversion disorder. We explained it to Sam that something in her brain misfired and her body and brain weren’t communicating. This disorder has caused physical, emotional, mobility and sensory issues. We aren’t sure if underlying anxiety caused it or if it caused the anxiety. We do know that the last few years of trauma surrounding Wyatt’s injury could have been part of it. When she hurt her knee she immediately went to Wyatt’s injury. She and I spent a lot of time talking about that with skills we both learned from her therapy sessions. 

With the help of a friend and Sam’s fear of Children’s Sam started OT at ABC Pediatric therapy. She has been able to start to trust her body again,  We also discovered using sour spray to distract our brain when we felt overwhelmed.  As of the beginning of January it had been over a month since Sam jumped, ran, walked up the stairs without holding on, stood up without help, or did any physical activity. As she continues to deal with the physical aspects, but we have seen some amazing changes with her too. One morning when she woke up it was like a switch had flipped. She woke up happy and wasn’t crying. We heard her laugh and she had a little more pep in her. I heard her singing along to One Direction in the car. Things I had once taken for granted.  Tj and I held our breath afraid to say anything! She has thankfully been our sweet girl since. She has woken in the morning smiling instead of in tears. She has laughed and been able to enjoy playing with her toys. 

She has been able to go out in public places, which made her panic a few weeks ago. She has been eating chicken nuggets and Mac and cheese! After weeks of barely anything she has some pounds to pack back on. She has been able to get into the bathtub again, which caused such panic attacks she could barely breathe a few weeks ago. Slowly, She is starting to use her body again. After three sessions of OT with her beloved Sarah, she started to trust herself again. Last week she jumped and hopped in place. Tj and I felt like she learned to walk again. Anna and Wyatt cheered with actual joy. Sam was so proud of herself we sent videos to grandma, papa and sissy. 

She has a long road of recovery ahead of her over the next few months. We hope and pray that we continue to see improvements and we are so incredibly thankful to have our girl back smiling and happy. She has OT twice a week for the next few months and will add PT into that soon to help her to correct her gait and gain more strength in her arms and legs. We continue to work with her therapist and pediatrician as well. As of mid January she has had 5 sessions of OT. She loves going and has been working so hard.  What she can’t do one day she will come back and show Sarah she can do it the next visit. She has been able to jump on a trampoline, bend her knees, do log rolls and walk backwards. This week she kneeled and crawled!

These are huge fetes from a few weeks ago when she could barely walk, couldn’t bend her legs and would actually pick her leg up with her hands to get into and out of bed. She has been working so hard to use her muscles. She still lacks a lot of muscle tone,lost over the last months, but her OT is optimistic she will get it back with OT and PT. 

A few weeks ago we went to the mall and made it to 2 stores. She struggled walking. Today we walked almost the whole thing and she happily spent my money on skin care and new shoes!

The differences are astonishing seeing how far she has come. Thanks to her good friend, Stella, school has been so much better too. Mornings were tough and there were a lot of tears and fears. Last week we asked if Stella (and her brother) could come in our car to school. It has been a game changer and made our mornings full of smiles! 

She has worked so hard both in therapy and outside of therapy. She made a big decision to go back to her soccer team as a “coach” to cheer them on. The last game we attended left both of us in tears and absolutely broke my heart. She sat at a table just broken and in tears. She didn’t even want to see her friends. This time she sat with her team and coached and cheered. She hugged her friends and was so warmly welcomed. This time I wanted to cry happy tears as I saw her walk to the box across the field. 

She has started eating all of her favorites again! Not eating may have been the scariest part of it all. We watched our girl lose weight and color in her face. A few weeks of very little food make a big difference in someone already thin. We are so happy that she is back to chicken, Kraft Mac and cheese, fries, cucumbers, ice cream cake and fruit roll ups! Not everyone understands how awful it can be to see your child afraid of food, having them come through it and be happy to eat is a huge win! 

The last 7 weeks have been a bit surreal. Each morning I brace myself that we go back to where we were, but pray for continued healing and happiness. Our girl is amazing and resilient and has come so far! 

We told Sam we know she will be back to running and playing and doing the things she loves. In the meantime Please keep our girl in your prayers!

Long time no write….

 Wow. About 4 years ago my Blogger app stopped working and apparently I gave up on writing. That whole pandemic probably didn’t help:) A lot of life has happened in that time. Some really scary things and some really amazing things. Writing has always been therapeutic for me and I’ve missed it. Hoping to come back to this space more often and get back to that part of my life. In the meantime as I reorganize my thoughts and think back over the time since I last posted I leave you with this tiny note.

Grief

It’s not even my grief 

and it haunts me

Not my story

Not even in my lifetime

But, it lives inside me each day. 

Somehow

 my mother 

my father 

Survived 40 years

Lived 40 years 

Smiled and loved 

For 40 years

Raised two children 

Missing one child 

Perfectly 

Healthy

Toddler

With 

Beautiful 

Brown 

Eyes 

GONE 

From a sweet boy

22 months old 

to a memory

One day here

the next day 

Gone

as time can heal us 

it can be a cruel reminder 

that the fear

doesnt go away

the sadness

is

the reality 

is

Grief knows no boundaries

Grief doesn’t go away. 

We become a new version

of the person 

that death left us

As anniversaries approach

the sting 

the memories

The reality of it all 

Is that grief 

Is the greatest 

most painful

selfless 

act of love 

we can give

love that never 

ceases to exist 

Ten Years-

How has it been 10 years?
Some days go by so slowly,
Some years go by so fast.
I sit back and think of the little
“Memories”
I have of you
they have faded.
Ten years of healing.
Ten years of grieving.
Ten years of regret.
Wondering,
if I could have given you more.
You made me who I am today.
You gave me the strength,
I didn’t know I had.
You changed my life forever.
This day 10 years ago,
Changed my life forever.
Changed my life me forever.
When a day supposed to be full
Of joy,
Of excitement and surprise,
Turns into
 the darkest hour,
 of the darkest day,
 from your worst nightmare.
Holding little Anna’s hand that day.
smiling to TJ waiting on news
Of a girl or a boy.
Having the doctor come in,
with the worst words.
 Incompatible with life.
Will not survive.
Hearing a wail fill the air
Of the ultrasound room
Not even recognizing that the cry was mine.
Leaving the office in a daze,
disbelief and pain.
Calling my mom from the parking lot,
 screaming into the phone.
My baby is dying.
It can’t live.
The baby is dying.
Ten years later these moments feel
Like yesterday.
I wish the memories I had
were better than what they are.
Ten years later.
You would be turning 10 years old.
In the 4th grade.
God had other plans for us.
The pain of losing you,
is never far from my mind.
Days like today,
it hits hard.
I love you, Emma Jean.
I hope we have made you proud.
I hope you look down from Heaven,
and see how much you have changed me.
See the person I am because of you.
Your life on Earth may have been short,
But the impact you have made will never end.
So today on “D -Day” a decade later,
I’m going to try my best to smile,
Give a hug,
Enjoy the sunshine,
And be thankful God made you mine.

You are More ...

When he walked in the door he didn’t say anything about it. I asked him how his day was and he said good, we snuggled and he changed his clothes. He ate his Oreos and milk and did his homework. As he worked on a math page he looked up and said Mom, someone was talking about me today. My heart sank. I was imagining the things that someone might have said about him. Imagining how I would respond. Then he told me- 
It happened today. For the last 8 years I have prepared myself for this moment. I have thought about what I would say and how I would say it. I have thought about how my words and reactions would have a major impact on him. Someone told other people he was adopted. I asked him if it upset him and he said that it did. He said the kid told him he had a secret about him and then whispered to other kids near them. He said the way he did it made it seem like it was bad. I asked him what he did and he said he told the teacher. I asked him if he said anything else to the boy and he said no. 

I apologized to him first. Told him how sorry I was that someone made him feel like he was less than. I told him I was sorry that someone made him feel like he should be ashamed of something we are so proud of. I told him that I am so sorry that he has to ever feel different, because I understand sometimes being different is hard. I asked him what upset him the most and he said that he didn’t understand how the kid knew he was adopted. I explained to him that sometimes people know because we look different. Sometimes people know because we are proud of Adoption. I explained that some people, like this kid, probably don’t know how amazing adoption is. I then told him what I have been rehearsing in my head for 8 years-The next time anyone makes you feel less than because you are adopted you can look them in they eye and tell them, well my mom and Dad chose me out of all of the little boys in the world, yours got stuck with you.

So, maybe it isn’t the most mature way of dealing with it, but it made my gorgeous brown eyed boy smile. I told him it was the truth. That daddy and I saw his face and knew God meant for him to be ours. That we wanted him more than anything in the world and we are so incredibly happy that he is our baby boy. Someday if it comes up again I may tell him about the 30 other families who wanted to adopt him, but Our Family was chosen. For now I want him to know that we are proud of Adoption being a part of our family. Anna was sitting near us and told him how much she loves adoption and she is sorry he felt so badly today. I told him how proud I was of him for telling me how he felt and that I never want him to not tell me how he feels, in fear of hurting my feelings. There may be times he wishes he were not adopted, not different and that is okay. That I will always be here to listen and to try and help him feel better about the amazing kid he is. I told him that as a mom sometimes I have to learn, just like kids. I have never been in his shoes and although I am proud to be an adoptive parent, I have never been a child who was adopted. I told him that we would work together to figure these things out as they come along. I told him he may be adopted, but he is so much more than that. Adoption is just one part of who he is. 

He is a Caito.

  He is daddy and mommy’s son, Anna and Sam’s brother. He is an amazing cousin and friend. He is funny and smart and a bad news bear. He is an artist and a rapper and has the kindest soul of any kid I know. He is happy and silly and hates to be alone. He is always hungry and will try any food.  He is fast and witty the best snuggler around. 

He is Wyatt Thomas Caito-

 exactly who and exactly where God meant for him to be.

 I pray he is never made to feel less than because he is adopted again, but for now I know he felt pretty good when he left to ride his bike.  

I am writing this and sharing it because I hope that maybe just one parent can talk to their child about adoption. Not everyone’s family is like ours where it is a “normal” everyday thing. I hadn’t really thought about it before, so I am asking that if you talk to your child about it let them know what a blessing it is. That it is another way that God creates families. That being adopted is something to be proud of, not to whisper about. 

  

Tough choices

Parent. 

Advocate.

Voice.

Biggest fan. 

Kids are pretty amazing. But, sometimes It's difficult to make the right choices to lead them in the right direction. It is difficult to know if you are helping to better them or screwing them up! 

Last year Wyatt had a rough time. As I fought for him time and time again, I felt defeated. More importantly, he felt defeated. He was sad that he couldn't succeed. Sad that he wasn't his best self and often put in situations with expectations that wouldn't allow these things to happen. It took ten meetings, what seems like a hundred emails and a few heart to hearts to come to the decision to switch schools. It wasn't because of sports or commitments. It was because I didn't want to see my son defeated. This kid has been through more than enough in his life. He is an amazing, kind, courteous, smart and gorgeous kid. He needs those around him to help him to be his best self. It isn't too much to expect. It isn't too much to ask for. Last year was rough. He walked out of school sullen because of behavior marks for things beyond his control, things accommodations were to be made for daily. 

This year is different. This school he comes home from daily with a skip in his step and a smile on his face. Even on the days where he has been beaten down (literally and figuratively), he still feels happy and welcome. He is proud of himself. He tells me about school and friends, about lunch and religion. I get positive feedback and the necessary information to help him make better choices. Instead of not taking the time for the one on one he needs, the principal takes the time to be the person to give him his tests. They help him to be successful and most importantly to feel successful. 

Today he received his first report card at his new school. He was out of breath as he ran through the door from running home. He immediately ran in to show me what he had received. He feels smart. He feels recognized. He is proud of himself in school. This is what we want for our son. This is why we made the choice we did. 

It is days like today that help us realize that the hardest choices sometimes bring the best results.