It's a merciful life

It's a merciful life

Sunday, July 20, 2014

Thirty six hours

In 36 hours we are supposed to be going on vacation. As my eldest cleverly remarked "it will be our first time ever on a plane when we aren't going to adopt or volunteer in China". We have planned to go to Florida. For a rest vacation. Because, after the past year and all of the unexpected medical and school encounters, well, I am tired. The beach is a place where I have always been able to recharge and forget the tougher things of life to just experience joy. We all love being there. I want this summer to have a memory for my girls, as sisters, spending 4 days at the gulf coast. I have been counting the days for months, until our departure. I have been imagining the beautiful clear water, with baby powder sand, and watching four girls laugh and play. I have dreamed of watching a sunset on the gulf coast. It is a bucket list trip, of sorts.

Last week, Hannah Joy vomited in the middle of the night. She hadn't eaten much dinner, and seemed tired. I immediately began praying against the domino effect. With 5 of us living in pretty close quarters, dominoes could easily happen. Especially with the dreaded type of bug. By Friday, I was feeling hopeful we had dodged the bullet. Maybe, just maybe, this was a one kid thing. My hopes were dashed when Mia came into my room last night, in the middle of the night, saying she too had vomited. This, within 48 hours of flight departure.

Today, I have wondered if it is selfish of me to want this get away. Of all the weeks for my children to get sick, why now? I have been trying to make sense of it most of the day. Traveling with a cold can be tough to take. Traveling with a vomit illness is my version of torture. In 2008, on one of our orphanage volunteer trips, one of my children vomited the entire time in the airport, on our flight, and in the car. I would rather take a needle through my toe than go through that again. I am sure the child who was sick during that time would agree.

And so, I am looking for mercy here. I'm trying to hope I will find some. Single parenting during acute illness has always been the hardest for me to do. Hands down, it is always the time when I wish I had an extra set of hands. I had hoped that this vacation would be without incident. Without the need to search for mercies. I am trying to trust that it is going to work out, and will cling to any mercy I can get.

Tuesday, July 15, 2014

My village

Birthdays always seem like a natural time to look back and reflect on one's life, and look ahead to where one is going. When I was 18, I went away to college and met my first "real" long term boyfriend. I assumed we would marry, start a family, and live out our lives together happily ever after. When that didn't happen, I remember times where I questioned and wrestled with God. Why wasn't my experience like my friends who were all marrying their college sweethearts? What was my life going to look like? Would I look back someday and have regrets?

As life moved on and I got my graduate degree, the desire to become a mother grew stronger. I seriously considered adoption. The rest is history. A good history. MY history. A history which is filled with no regrets. I honestly can say that I now thank God that `I did not marry my then boyfriend. My life would have been so different. So, so different. I would never know the joy that now encompasses my life through my four daughters. I would not be the person I have become without them. I literally shudder at the thought of not having them in my life.

Being single isn't always an easy way to go through life. They say it takes a village to raise children. I actually think that the phrase should be expanded to say it takes a village to get through life. For all of us, whether single or married. A village of different roles people, important people, play in our lives. People in the roles of best friends, friends, coworkers, acquaintances, church community. I know in my life, I would be lost without the people who stand beside me. The people who are my friends. Not just "friends" in name, but real true friends.

As humans, we are formed to be in relationships with others. Since the day we are born, we are learning how to be in relationships. First with our family, and then with the outside world. We are not meant to go through life alone. In society, there is a huge emphasis on marriage, with marriage being the quintessential relationship. Understandably so, and I do not dismiss it. But, as I think on my life as one where I cherish the friendships I have made as an unmarried person, I believe there is no less value on the people who have become my deepest friends. Nor is there less value to those relationships I hold with my dearest friends. Those friends who know the joys and sorrows of my life. Those who have seen my faults and continue to stand by me. Those who know my deepest fears, and my greatest accomplishments. The people who I know I can count on whether things are great or in crisis. The people I can vent to, pray with, and laugh with. The people who can stop by and see my house in disarray without judgement. The people who can see my children misbehave and offer encouragement, not criticism. The people I can be most vulnerable with, and know that they will understand and help me grow.

Looking back at my life, I can see how God gifted me through the people He placed in my life. How He prepared me to be in the place where I am at now. This unexpected, yet beautiful place that is my life. Over the years, I have had such authentic friends who have helped me grow into who I am and who challenge me to keep on growing. Friends who have reflected the face of God. Friends who have come alongside with me to China, to experience something I love so deeply that it is hard to put into words. Friends who drop everything to bring food or drink when I am sick. Friends who would willingly choose the chaos of a vacation with me and four young girls. Friends who will pick up the phone to listen to me despite their own hectic life responsibilities. Friends who see me as I am, with four amazing little girls, and love me as well as them. Friends whose thoughtfulness and care go beyond what is deserved.

I am blessed, really incredibly blessed beyond measure, by the people in my life. Truly, they are my gifts. And today, as I reflect back on my life and consider where I might be going, I feel content at where I am. I celebrate these special people who are my friends and the roles they play in my life. I am so grateful for the chance to be in relationship with them, and for the privilege of being a friend to them too. And I am looking forward to another year with some amazing people to share life with.

Tuesday, July 1, 2014

A new year

We made it. Today marks the new fiscal year for my employer, which means that all of our benefits begin again. I ended last week with zero sick time left. Zero. Talk about panic when it comes to having 4 children where only one illness can bring a game of dominoes. I start today with 80 hours of sick time to be used in the upcoming year. Thank.You.God. The new year is here and it's a fresh start.

Those who know me know how much I love light. And warmth. Summer is, for me, the perfect time of year. It's the time to play together and rest together. The academic year is done, which brings a sense of relief. Huge relief. Especially after this past year. I think back and shudder at all that has happened. But more than that, I rejoice in all the mercies that happened along the way. We were provided for, by God and by friends and family. We were carried through. Mia's school year ended by her new first grade teacher reporting "she's not making benchmarks" and the school special education department asking to do further evaluations for her in September to give her more services that she needs. Talk about a contrast from only four months ago when her previous teacher said she sees "no disability". Lianna also was identified as needing continued help for her dyslexia, and in no way should services decrease, but increase. If we had not gone through the struggle of this past year, none of this would have come to light for either of my precious girls. Huge, huge, mercy. Mia and Hannah Joy's transfusion were able to happen as scheduled. Every single one of them. Despite coxsackie, influenza A, and random fever illnesses, not one needed to be rescheduled. My fellow thal mamas, especially those who are treated at CHB will know the significance of this. Huge mercy. I still have a long road with Mia. I have yet to set up the endocrine testing and appointments needed to start growth hormone. She will need a full body MRI, bloodwork, a hormone challenge, consults with several specialists. Given the enormity of this, and the fact that I am at the point where I need to recharge, I will begin scheduling these things in August. Part of me feels guilty about this, and part of me feels that I need to allow myself a break by just focusing on the thalassemia care for the summer rather than the Russell Silver syndrome and thalassemia. I choose to give myself that mercy. We have been welcomed into the Russell Silver community, where fellow parents can share the joys and struggles of parenting children with this condition. Another huge mercy. Despite all that was happening in our family, Katelyn did incredibly well managing the transition to middle school. She made wise choices with friends. She had perfect attendance. She played on teams for soccer and basketball. She loves youth group. She ended the year with a 4.0 GPA. Mercy. And Hannah Joy, oh my sweet baby girl, is thriving. This year began with something no child should ever need to experience. She was taken from all that was familiar to her. Familiar people, sights, smells, sounds all gone. Removed from her second set of parents, and placed into my family. Her year began with loss. Such a huge loss. Grief. And yet, she trusted. She expected to be loved and cherished. She soaked it in, over this past year, and she has thrived. She is much more secure and confident that she is here now and will never have to leave again. She is trying to believe that "mama never never leave me. Mama always always come back", words that she says each night as she falls asleep next to me. Another enormous mercy.

Our new beginning is here. As a family we will bask in the light and warmth. And try to get some rest. Talk about mercy. I cherish that one, and will look forward to what this next year will bring. I look forward to all of it. The joys, struggles, and mercies.

Friday, June 27, 2014

Space

In 2004 I was the lucky "lottery" winner in my town's affordable 40B housing program. For those unfamiliar with 40B homeownership, it is a program in my state designed to enable lower/moderate income families to purchase homes in more affluent communities where homeownership would otherwise be impossible. My dear friend who works for my town explained the process and encouraged me to apply. At that time, I was a single parent to one daughter, and condos were being built in the town I grew up in. We would qualify for a 2 bedroom condo. It was a fantastic opportunity to buy a condo in a town with a great school system and with more racial diversity than where we were living. I, along with five other families, were the recipients of the opportunity to buy one of these condos at half price, alongside fifteen others who would purchase a unit at full price. It was certainly an answer to a prayer, and has been a tremendous blessing for which I am incredibly grateful.

Over the years, as my family grew, we have adjusted our living space to make things work. When I said yes to bringing Hannah Joy home, I knew that my dream of owning a three bedroom condo or small home where the kids could play outside would need to be put aside. If I wanted to move to a southern state I could likely live this dream. But, given that I now have a child in middle school, whose emotional security centers around consistency, it would be unfair. Besides, I have two children who need to be at our current medical facility for their thalassemia treatment. And I need my amazing support network, so that parenting my girls is possible. So, we have brainstormed and adapted our 2 bedroom condo to fit our family needs. We did not need a dining room given the size of our kitchen, and made that into a third bedroom space. My eldest would occupy this space given her needs of needing to stay up later than her sisters to complete homework. It worked well for a while until, as she tried to complete homework, she was constantly disrupted by her younger sisters as there was no door to close out the sound. We made it through the academic year, and last nite, thanks to some great guys, we "switched" rooms. My eldest now has the second bedroom with a door, my two middles have their bunks in our makeshift third bedroom, and the baby, well, she still sleeps with me.

Last nite, the excitement was palpable. The girls were so excited with their new spaces. The guys even installed a ceiling fan since there is no window in the dining room/third bedroom. The girls LOVED this, especially as Nate put his hand into the running fan to show the girls they would not be hurt if a hand (or head) hit the fan while running. This was added security for Lianna, who occupies that top bunk.

Our mercies continue to abound. There is no way we could have possibly moved all that furniture by ourselves. My friends graciously agreed to come do all the work, after working long days themselves. They never complained once about the collections of things the girls have. They helped move, install, and even vacuum while four little girls all looked on. We are so grateful for their care. And last nite, my sweet girls all slept happily in their new spaces.


Sunday, June 15, 2014

Father's Day

I knew something was wrong about half way through this morning's service when my littlest one started saying she was "cold". The last time she used these words, she was running a fever. Sure enough, by the end of the service she was crying in the parking lot to go. With a 102.5 fever. It was the topper to a day which is already hard for us.

Father's Day is hard for my girls, which makes it hard for me too. It is the one time where they feel singled out for not having a dad present in their life. They all know they have birth fathers, and those who had foster fathers know of them too. And, we are fortunate to have a few exceptional male role models, whose presence is deeply appreciated and recognized. But this day isn't "positive male influence day". It's Father's Day. When my oldest was in 1st grade, each child had to do a project. The teacher called my daughter to the front of the classroom. She was asked "what do you love most about your dad"? The question was innocent enough. My brave daughter's eyes filled with tears. "I don't have a dad" she replied. The teacher then remembered I am a single parent. She tried to ensure that the beautiful craft she had prepared with the words Dad on it, could be made appropriate for a grandfather. But, it didn't matter. It was out there, in front of my then 1st grader and her classmates to see. The teacher quickly emailed a heartfelt apology, and I chose to forgive her. I later explained to my daughter that sometimes people make mistakes. Sometimes, those people are even teachers or other trusted people that we feel should know better. Every year as Father's Day approaches, my girls are torn between their desire to honor the wonderful men in our lives, and the loss they experience for my singleness. It is days like today that I wish my life was more traditional and I wish I had a husband. Someone to cherish these precious girls with.

Today's sermon by our beloved pastor was about God as Father. How He cares about us both spiritually and physically. How we are His adopted children, and He loves us as much as He loves His biological child. As I sat there listening, and looking around at the proud fathers sitting around me, I was reminded about how God weaves families together, including my beautiful family. I was reminded of our mandate to care for orphans and widows. Not everyone is called to adopt, but, we are all called to love and provide care. I remembered my call. That call to bring 4 little girls into my life, and trust in His provision. Single parenting is not easy. Single parenting 4 children, all with their own individual needs, stretches me to my max. I worry that tomorrow I will need to be out of work with my sick child, with only 4 hours of sick time left until our new fiscal year July 1st. I worry that due to fever, one or both of my two chronically transfused children will be unable to be transfused this week, which creates havoc in trying to get it rescheduled and more missed time off from work. I worry that I will be unable to meet with my new staff person who starts tomorrow, or the two other new staff who have started in the past few weeks and continue to need my supervision and support. In my limitations, I cannot do it all and I let people down despite my best efforts. Life happens, and it is messy despite how I wish it would look sometimes. If there is one important lesson I am learning through my 4th adoption it is that it is impossible to do all of this alone. Impossible. Which again reminds me of the message so brilliantly spoken today. He is my Father. He is my girls' Father. We are adopted into His family. He is asking me to rely on Him, and He will take care of me. He will take care of us. I just need to trust. And lean on His mercy as He continues to offer His provision through the many people He has placed in our life.

Wednesday, May 14, 2014

Black boxes

There is something about giving my 3 year old a medication with a black box warning. Something scary. Something which requires every ounce of trust I have in a God who is overseeing and guiding my life and her life. Something which forces me to surrender the fears I have with it to Him.

Hannah Joy's thalassemia is not clear cut. It continuously makes me wonder, and second guess the medical decisions recommended for her. To live anemic? Or to live with controlled anemia but with the significant consequence of iron overload, requiring medication to counter the overload? It's not a determination which is easy to make. Hannah's hematologist is a worldwide expert. He has seen children who live in chronic anemic states. He sees the realities those children endure as they are adults. The realities are not easy. Things like pulmonary hypertension. Chronic pain and breaks from bones which try in vain to combat the anemia. Enlarged spleens. His recommendation is to keep Hannah as healthy as possible with transfusions to control the anemia and avoid these serious complications. There are some very promising trials of treatments on the horizon for her type of thalassemia, he says. So keep her transfused. Yet, with each transfusion, we are allowing toxic iron to build up in her body. Iron, so toxic, it would eventually build up in her heart if not treated. Ironically, even without transfusions, Hannah is at risk for developing iron overload just based on the type of thalassemia she has. Eating foods with iron content or fortified with iron would eventually need to be removed, just as it is with the transfusions. When I consider it that way, there is really no escape.

There are currently two medications used to control iron overload. The first has been around for many years. It is an infusion, which means a needle is inserted into the child and carries medication to remove the excessive iron. The infusion is often 10 hours, 5-6 days a week. Mia uses this medication, and has a "pump" which delivers the medication. She wears the pump while sleeping. Miraculously, the pump does not interrupt her sleep. The second medication is an oral medication. It is taken by the patient once or twice a day. I am told it tastes horrible, like chalk. It is this medication which carries a black box warning. The warning, because, a very small number of patients taking it have developed very serious kidney issues or gastrointestinal issues. As in life-threatening issues.

The decision about which medication to give Hannah Joy was not an easy one. Just like the decision about her treatment plan. Hannah has been traumatized by frequent needle sticks. It began for her as a baby, during times where she entered hospitals without a mother to hold her tight. It continues now as I try to reassure her as her nurses need to stick her for the 3rd or 4th time to get a vein. The thought of me, as her mother, delivering a daily needle to her abdomen or thighs is too much. She is too young to understand, and there are consequences to childhood trauma. Consequences I wish to avoid as she works to become more secure emotionally. And so, the only option left is the medication with the black box warning. Some days, while I crush it up, I ask a quick prayer of protection for her little body. Other days, I live in denial about what I am actually doing.

Hannah easily takes her medication, twice a day. She chooses whether to have it crushed in pudding or applesauce. She likes to have me feed it to her. She endures the chalky taste. And she skips off to the next task of her day.

As a mother, I wish I could take this from her. I wish there were other medication choices to remove iron overload. I wish that neither of my children had to endure what they endure on a daily basis. Yet, the reality is that this is their journey. I cannot spare them from it, no matter how desperately I wish I could.

Wednesday, April 30, 2014

Faith, Hope, Love, and Joy

As I continue to wrestle with the inconsistent diagnostic information for Mia and have entered alongside fellow parents who are parenting children with both medical and special needs, it is comforting to know that people have been so supportive by encouragement, positive words, and prayers. Yesterday, one of my dearest friends wanted more details about what happened at last Friday's appointment. As we texted back and forth, I relived and reconsidered the information which was said by Dr H. I went to bed a bit unsettled, knowing that I just need to trust that Mia will receive the best care possible. I will see to it. And knowing that she is teaching me important lessons to help me grow into the person I am meant to be.

This morning, this sweet friend called to tell me she had been praying at 3:00am for me and my girls, and said she realized something that she needed to share. What she said was so beautiful, so simple, and yet so profound. She explained that my decision and dream to become a mother began with Katelyn. It required great faith, and deepened my own faith more than I ever imagined. Katelyn exemplifies faith. I followed my call to be a mother to a tiny baby who lived half way across the world. She enabled me to fall in love with her country, making it a part of myself. She helped my faith to grow, as I experienced the opportunities to go back to that country and serve. While serving, I was brought to my Lianna. Lianna, she explained, represents hope. Lianna opened my eyes to the understanding that I could parent a family, not just a single child. When I struggled with attachment issues and deep seeded insecurities plaguing Katelyn, and grappled with how to best parent her, Lianna brought hope. I learned that it was not my failures as a parent which haunted Katelyn, rather, it was the trauma of her experiences. Lianna represented the hope of overcoming trauma, and the hope of family. She shows the hope of communicating feelings, and the healing which comes from sharing. Lianna embodies hope. Last year, I received joy unimaginable, as I was given the unexpected gift of Hannah Joy. I was reminded again of how I thought my family was completed after Mia, and how I had never imagined it would be possible to overcome the hurdles of the lack of finances and confidence I had about both the adoption and parenting a 4th child. Hannah taught me that trusting God sometimes brings joy that is beyond explanation. Hannah is joy palpable. Finally, my friend explained, there is love. Not the easy, looks so pretty love, but REAL love. The love that takes self sacrifice. The love that stretches and brings people out of a comfort zone. The love where patience is required, sometimes on a daily or minute by minute basis. It's the in the trenches, hard work, type of love. Where the payoff brings rewards which are indescribable and transformational. That, she explained, is my Mia. Mia represents a love which is greater than I ever imagined. A love which has required me to move outside my skills as a parent, and lean on others. A love which has required more energy and fight than I ever thought I had. A love that is life changing because it trusts, protects, hopes, and perseveres. It is a love that doesn't fail. My Mia, and parenting her, is giving me this love. She is showing and teaching me this love. Mia epitomizes love.

Hearing this today might have made me gasp. It certainly made me cry. My friend is so wise, and offered an amazing insight into what has been happening through my little family. I am incredibly grateful for the gifts of faith, hope, love, and joy that my girls have been giving to me. I am also humbled by the friends placed into my life. Friends who encourage and support, friends to ride the trauma train with, friends to walk the special needs path beside, and friends who choose to look past imperfections and point out the faith, hope, joy, and love they see. It is just what I needed to hear.