Transfusion in quarantine

The transfusion Mia and Yaoyao had three weeks ago was in the midst of a snowstorm. As if that was't enough fun for the month, today's transfusion is in quarantine. Due to three of us having Influenza A. Fever, chills, aches, cough, headache, sore throat, exhaustion, and diarrhea all part of Influenza A. Yaoyao, Lianna, and myself all positive. So far, Kate and Mia remained unscathed. Thank you God. We walked into Children's Hospital Boston and were handed masks. Whisked into a treatment room. Droplet precaution sign posted on door, and door closed. Everyone who enters the room has to wear glove, gown, and mask. Our hematologist came down to assess the situation. He decided transfusions can go as planned. Phew. I would have cried if I had dragged us all in here only to have to drive home again. This is the longest I have been able to remain in a position other than horizontal for the past 48 hours. That alone warrants transfusions happening.

With all of this happening, my little one immediately began freaking out, refused to put on a mask. Panicked with seeing us in masks. Panicked at seeing everyone else in masks. Crying softly, and clamoring to me to hold her tight. It makes me think of all of the times she was in China, needing transfusion. Was she scared during transfusions without a mama to hold her? While in the hospitals in China, did she need to wear a mask or did everyone else wear masks? Seeing this today, did this remind her of something? A memory without a clear thought since she was a baby, but a visceral memory none the less? I will never know the answers. It makes me think of the enormity of what my girls have experienced before they came to me. Things they experienced all alone. As orphans. It makes me grateful that now I can protect them as best I can from future trauma.

Blood is now started, and we are in isolation. Mercies have started. Actually, they have been here all along, from the beginning of this latest trial. A friend made grocery store runs for children's motrin and jello. She did this in the middle of Saturday's snow with poor driving conditions. Food and groceries were delivered by a friend from church on a Sunday, before even knowing that I would be unable to move from my bed, never mind cook. My dad made a soup and my mom has been doing pick up duty with the healthy girls. Friends have been keeping us in prayer. Coworkers and friends have been sending texts and offering runs to stop by or run to the stores. Facebook friends have sent constant words of encouragement. A dear friend offered to come relieve me of staying with the girls during the transfusion, so I could go home and rest. An offer I would have taken her up on, if Yaoyao wasn't only 7 months home, and still too fragile in her trust and security. The nurses just brought us dinner, and gave the girls some toys to play with and keep. There are beds we can take a rest on in our isolation room. Just when I think that solo parenting is toughest during times of illness, I am reminded of the village we really do have. The village that sometimes I forget about under the weight of being ill, or when life just seems overwhelming. The village which surrounds me and empowers me to make the right decisions for my girls. The village which makes these life challenges just a tad bit easier.

Grasping for mercies

Twelve hours ago I entered a room in Mia's school. Waiting in this room was the advocate, elementary head of special education, speech and language pathologist, classroom teacher, and ESL teacher. I felt calm and ready to hand things over to God. The meeting began. They asked for a medical update. I explained that Mia's hematologist is an expert in beta thalassemia major. She is receiving exceptional care with him. I explained that he was concerned about her growth failure, and sent us to the endocrinologist. The endocrinologist felt Mia had a underlying syndrome. She saw genetics and genetics agreed that she likely had a syndrome. Russell Silver Syndrome. A pin drop could be heard in the room at that moment. I was not looking up to see individual faces, but saw writing by everyone. My advocate explained that this syndrome carries many of the symptoms we have been seeing with her, from the very slow eating, slow processing, learning difficulties. We reviewed the texting Mia had last June, which showed serious deficits in comprehension, memory, reading, and math. I explained she has difficulties with homework. I explained that she has difficulty understanding words and their meaning. For example, last week's homework required writing sentences from words studied in the week. One of these words was "hung". She understood she needed to write a sentence. The sentence she wrote, was "the boy hung his grandma" (not spelled correctly, but that wasn't the intention for this assignment). I did not gasp when I read the sentence (although wanted to) but asked what it meant. She said "you know, the boy, you know, made his arms like this" (making a hugging gesture). I was calm and collected. I told them I needed help for her. She already has so much up against her with thalassemia.

The speech therapist was the first to respond. She said she did some research into children's language acquisition when adopted internationally. Within 12 months, most children show catch up in the new language, with respect to comprehension. Expressive development typically follows receptive development. For Mia, it seems backwards. Her comprehension has always seemed further behind. She cautioned me that what she was sharing was for children adopted under age 2, not at age 5 like Mia. I reminded her that Hannah was adopted at almost 3, and within 3 months showed above age comprehension. I also reminded her that Mia was developmentally at a 3 year old level when adopted. The speech therapist said she would do some type of "trial" of speech therapy. This means that she would offer 2x30 minutes, for 6-8 weeks. After that time, we will reconvene. Maybe she is thinking that a little boost is what she needs. Maybe. Again, I was trying to be open minded and receptive.

When the classroom teacher gave feedback, she said, as she did at parent/teacher conferences, that she sees no issues in the classroom. She sees her perfectly fine. No.Issues.At.All. My advocate spoke up, and asked about her thoughts about the homework difficulties she has. He said maybe it's a memory issue then. I brought up that she is unable to state her phone number or address, despite working on this for the 2 years she was in kindergarten. The special education program head asked the teacher if she believed Mia has a disability. She emphatically said NO. My heart dropped. How can this be? What was I saying and why is she not hearing? Does she see the homework I send back to her with all of the notes on it documenting the struggle? The advocate asked if she needed to review information with Mia. She replied that she needed to review information with most of the first graders. My advocate spoke up and said that Mia is beginning to become aware of the differences between herself and other first graders. It is impacting her self esteem. The teacher countered, saying she sees nothing but confidence and participation in the classroom. Every single item we brought was minimized or dismissed. Again.

Mia's ESL teacher did show some visible signs of genuine concern. She was unaware Mia was still able to retell basic information like her address and phone number. I told her that every week the reading log asks the question, "the book I like best is_______ because_______". I explained that every single week the because is answered by "I like it". It is rote. There is no explanation about why she likes something. The speech therapist said to give her a choice to see if she can expand why she likes it. I will try that. But I cannot understand why at half way through the school year the classroom teacher feels this is typical. Clearly the other kids are expanding. Hannah can even answer "It funny" at age 3. The ESL teacher responded by saying she will try to add a third time a week with Mia. She wants me to document what I am seeing with her, and keep a log of these things. A very big mercy.

When it was clear that the teacher was unwilling to support any concerns whatsoever for Mia, my advocate spoke up. The testing completed by the school all suggests that her very poor skills are due to ESL. I believe the poor skills are what impacts what I see living with her. Doing homework with her. Parenting her. My advocate said we disagree with that finding that the scores were due to ESL, and request and independent evaluation to be paid for by the school. The school had no choice to agree. They are saying they have a contract neuropsychologist, and he could likely do it quickly. My immediate thought was that he could be biased since contracted by the school system. I have the choice to find an outside person. Although I said I would accept the contracted neuropsychologist, I am considering finding a neutral person without clear ties to the school. I am praying for guidance and wisdom with this decision.

The meeting did not go as I had hoped. I had hoped that with all of the homework errors documented, and with all of the medical issues, they would at least begin development of an IEP. Or even offer her a 504. None of this happened. The advocate told me that this year for Mia is lost. She will not likely get any specialized services. I need to prepare for this. And so, I am grasping for mercies. I know they are there. I have thought about it most of the day, as people texted, called, or emailed to let me know there were thinking of us, praying for us, hoping for the best. Mercy right there. The fact that my advocate quickly asked for an independent neuropsychological evaluation and it was agreed to is another mercy. I guess the school didn't have a choice since there were not going to back down from the "only 2 years of english" issue, but it is still a mercy. The fact that I remained calm, collected, and articulate through the meeting is another mercy. This is my child we are talking about. What she has endured in her short life is unreal. What they are doing to her is a huge injustice. Many kids have an IEP/504 based on beta thalassemia major alone. Mia doesn't. Yet I remained calm, and spoke my piece. I did not react in anger. Big mercy. The ESL teacher is really a remarkable person. I do trust her, and told her this. She is asking to work with me, on the concerns I recognize, and keep in communication with her. Mercy. Mercy. Mercy.

This journey is hard right now. My hopes in the process being salvaged are gone. There was no recognition that Mia has such a long, hard road in front of her. But I see glimpses of His light. I am making myself look at it. Grasping for it. Clinging to it. I know that He is there. He is leading. He will provide.

12 hours...

In 12 hours I will be meeting with the elementary special education supervisor, Mia's classroom teacher, Mia's ESL teacher, and the school speech and language pathologist about their findings that Mia is ineligible for special education services. If it looks like I am counting the minutes, I am. If I said I was completely at peace with this meeting, I would be lying. All of my past experiences in trying to obtain special education services for Mia have been met with such opposition and dismissiveness that all of my faith in the system has been lost. I have no trust in those in charge of educating my child. This is a sad fact. However, the fear that I woke up with this morning is no longer there. It has been replaced by the sense that God is in charge of Mia. He always has been. He protected her while she was living in an orphanage, with anemia so severe that people have been known to slip into a coma and die from it. He guided my family to her, after she waited for 2 years for a family on the waiting child list. He gave grace as we struggled through the first months together. She is His. She always has been. Her needs are known to Him, and He WILL provide for her again.

I will not be walking into this meeting alone. I have hired an advocate who will accompany me. He knows the laws. He knows the rules. He knows what my rights are. He knows the system. He understands the testing which has already been completed. He has said he is literally appalled at how my child has had her needs dismissed. I feel confident that he knows what he is doing. But even greater than that, Mia has a bigger advocate going into this meeting. One who commands us to care for orphans and widows. One who asks us to love one another. One who asks us to offer forgiveness. To offer grace. Even to those who have been obstacles to my child's educational and emotional well being.

And so tomorrow, I will *try* to extend some grace to those who have wronged her. Mia is complicated. She is a child who came here a age 5 with beta thalassemia major. Perhaps because she is not a behavior problem, tries her best to please, and is truly one of the kindest children I know, the educators had hoped she would be ok. Perhaps they really did believe that all of her issues were due to "only 2 years of english". However, the circumstances changed last month with the realization that there is likely a second diagnosis of a syndrome which explains some of what is complicated about Mia. I am hoping that the educators will be able to see this. I am hoping that they will be willing to work together to help her achieve to the best of her ability. I am hoping that I remember that I have the choice to reflect Christ while in this meeting. I choose to surrender to the one who holds Mia in His hands, and trust that He knows what is best for her. I choose to believe that He will provide for her, just as He has always done.

Moving forward for 2014

A recent conversation with a dear friend reminded me that everyone in life has adversity. It is everywhere. Yet how we respond is the important part. How we *choose* to respond. Do we look for the mercies? Do we cherish the goodness amid the hardship? Or do we focus on the enormity? Do we become stuck in negativity? For the past several weeks I have felt overshadowed by the current trials. I lost my focus. There are still moments in the day where my focus is lost, but I understand what my friend was telling me. God never looks at me and thinks "her needs are too much". He looks past the needs, and says I am worth it. Always. That thought stopped me cold in my tracks.

Yesterday was transfusion day for Mia (and subsequently for Hannah, although for Hannah it isn't "life or death" as it is for Mia). It was also the day of the first blizzard of the season. By Wednesday, I was worrying about how I would get into Boston for our 3:00pm transfusion time if the weather was poor. I started worrying about how we would all get home. I worried about the two older girls having school, and possibly being released early. Worry instead of trust. Ah, yes, I still have a way to go. By 7:30pm Wednesday night we got the call that school would be canceled for both Thursday and Friday. Mercy #1. We would all go to Boston for the transfusion. Another dear friend living in Boston offered a place to crash if we became stuck in Boston due to poor driving conditions. Mercy #2. On Thursday morning, I called the hospital to see if we could come in early. The forecast was snow for the next 36 hours. The sooner we could get in and get back, the better. No cancellations yet. However, I decided to get the kids ready, pack clothes "just in case" we could not drive home, and head into Boston in case of cancellation. As we were driving, I got a call saying they would start the transfusion early. Mercy #3. We got safely into Boston, and each girl was easily accessed for IV to begin transfusion. By two of our favorite nurses, Marisa and Diana. Mercy #4. Our child life specialist Jill, heard one of the girls say she was hungry...and out came the lunch menu. For all 5 of us. Mercy #5. An hour later, Mia's hemoglobin was remarkably 9.3 despite being at day 24 since last transfusion. We would be out of the hospital at 4 hours, rather than 5 hours. Mercy #6. I could keep going and going. Minimal sibling squacking. Mercy #7. On the road home by 4:00pm. Mercy #8. Friends and family calling or texting to see if we made it home safely. Mercy #9. No transfusion reactions. Mercy #10. Children who slept the entire 2+ hour drive home, giving me a break to think, pray, and listen to music uninterrupted. Mercy #11. Ect. Mercies everywhere.

As my precious friend reminded me, my children are watching me. They are learning how they could respond, someday, when they face a trial which seems overpowering or too big. I choose to focus on the mercies. I choose to focus on what I can do, and let go of what I cannot. I choose to trust that Mia's needs will be provided for; that our needs will be provided for too. I choose a new beginning for 2014.