Posted on April 27, 2011 - by Megan
The Adventure Continues: An Unexpected Chapter
A couple weeks ago, we found out that Baby J might be positive for Sickle Cell Anemia. This was quite unexpected, since we thought both boys were perfectly healthy.
As we waited for a second round of tests to confirm whether he was just a carrier of the trait or actually had the disease, Joel and I went through the exercise of considering whether or not we could move forward if the worst was true. Could we be open to special needs, though it wasn’t something we originally planned to consider?
As we waited, we prayed and we talked and we sought counsel from doctors. But it was clear from the beginning—regardless of the test results, God meant for Baby J to be in our family. We would press ahead.
When the test finally came, they confirmed that Baby J had Sickle Cell Disease, not just the trait. As I found out yesterday while talking with a physician at Vanderbilt Children’s Hospital, he has the most serious iteration of the condition, though he is doing surprisingly well in spite of that and does not yet have any symptoms.
What is Sickle Cell?
In case you aren’t familiar (and we weren’t), Sickle Cell Anemia is a serious, but not contagious, genetic blood disorder that causes the red blood cells to mutate and become crescent shaped. If blood oxygen or hydration levels drop too low, the cells harden and stick together, causing blockages in blood vessels.
When sickling occurs, a “pain crisis” or even organ damage can result. Life expectancy is projected to be lower than normal, though good, preventative medical care is thought to mitigate this.
Sickle Cell Disease is found mostly in people of African descent (1 in 350) as well as some people from Hispanic, Mediterranean and Middle Eastern cultures. It is thought to be a way that the body has adapted to protect itself against malaria.
What does this mean for our future?
Our biggest concern right now is infection. The spleen, which filters blood, is compromised in Sickle Cell patients, so any fever has to be taken seriously.
Once we are home, we will make sure he is thoroughly hydrated and well oxygenated at all times. When he exercises or plays sports, he’ll need to take frequent rest breaks to allow his blood to re-oxygenate so his cells don’t sickle. We’ll avoid high altitude and won’t expose him to extremely hot and cold temperatures for the same reason.
He’ll also be on a daily dose of penicillin until he is five years old to protect against infection. There is a possibility of hospitalization due to fever, pain crisis, or infection, but we hope to keep those to a minimum with proactive treatment and preventative measures at home.
Our doctor explained yesterday there is a range in severity in how Sickle Cell presents in patients. She said there is good reason to hope Baby J will do very well, given where his blood levels are on the tests we received. We are encouraged.
Why did we decide to move forward?
Very simply, because this is our son. We believe God has lead us to both of our boys, and just as we would with biological children, we accept whatever comes with them as part of our story.
As I’ve said before, we believe every life matters and deserves to be lived to the fullest, regardless of its challenges and difficulties in play. Every child deserves to be loved and to have a family. We believe God chose Baby J to be part of ours.
Certainly, there will be difficult days. Without a doubt, our life will become more complicated. But, we also believe it will be filled with more joy as God asks us to love boldly.
Once again, this journey is not what we planned. But, it is what God planned. It’s exciting to know—now more than ever—that God is writing our story, including ever twist and turn along the way.
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My name is Megan Hyatt Miller. I'm a little Emmilou Harris, a little Bonnie Rait, and a dash of Paula Dean—mostly because I identify with her unbridled use of butter and ample hips. I am passionate about living and telling a good story. I'm a wife, a stepmom and and an adoptive mom. I am passionate about adoption, racial reconciliation, and creating beauty and a sense belonging for those I love. To learn more, click here. Thanks for stopping by.
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April 27, 2011
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Cassie Hansen said:
Megan, I truly believe that God led you to Baby J because you have Vanderbilt Children’s Hospital so close. That sweet baby needs not only your love and protection, but the vast wealth of knowledge that hospital provides. J’s life will be so amazing and beautiful, and one I hope to be just a tiny part of!! Love you!!!
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April 27, 2011
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Megan said:
Cassie, I have wondered the same thing myself. It just can’t be an accident that we have Vanderbilt right here. People come from all over the country to see these docs and they are in our backyard. We are blessed and so grateful. Love you, Friend!
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April 27, 2011
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Erica said:
Megan, I know your mom and dad and have been following your adoption journey for a few months now. Love your heart and your response to this speed bump. I imagine it was scary to find this out, but I love the way you are choosing to trust God and finding peace that these boys are your children! Can’t wait to watch everything come together! =)
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April 27, 2011
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Megan said:
Thanks so much, Erica! I appreciate your encouragement. We can’t wait to watch it come together too:)
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April 27, 2011
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Michael Hyatt said:
I am so proud of you and Joel, Megan. You are being very courageous. This baby is blessed to have you in his life. I can’t wait to see how this plays out. Let the adventure begin!
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April 27, 2011
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Audrey @ The Brown Brigade said:
God is writing your story!! And this baby needs your family as much as you need him. Praise the Lord that you are willing to be obedient.
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April 27, 2011
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Angela Hays said:
I went through a lot of “why us” when we first got the diagnosis of a severe peanut allergy for my boys. I knew that from now on our life would be “different”. I mourned for the life I expected for us. I was fearful that the boys would never get to go to birthday parties, summer camp or even an ice cream parlor. Instead, we’ve just come to accept that this is “normal” for us. We’ve learned ways to adapt and we’ve enjoyed birthday parties and ice cream parlors (with necessary precautions). We hope they will be going to camp soon.
It’s OK to mourn for the life you had imagined, but know that God has so many wonderful blessings ahead for you!
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April 27, 2011
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Annie Mc said:
Megan,
I admire you. That is all. xo
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April 27, 2011
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Megan said:
Thank you so much. XO to you!
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April 27, 2011
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Jennifer Gillett said:
You and Joel are SO the right mommy and daddy for Baby J and I’m so excited that he and M will have your arms to embrace them as they learn the true meaning of family. Love your heart, sweet friend.
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April 27, 2011
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Megan said:
Thanks, Friend! Love yours. Thankful to have your company on this journey.
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April 27, 2011
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Donna Maria Coles Johnson said:
Via your father’s Tweet, I’m here to encourage you. While I have never dealt with serious medical challenges like this, I know what it’s like when our plans clash with God’s will. You have faced a tough decision with much grace, and that encourages many, including me.
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April 27, 2011
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Bethany Planton said:
It is so inspiring to hear how you and Joel are going to be taking care of these boys! I know God is going to place all kinds of blessing in your lives because of your obedience and love.
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April 27, 2011
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Megan said:
Bethany, thank you so much. We are grateful for the chance to experience Jesus in a deeper way through this new chapter in our story.
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April 27, 2011
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Rachel Wojnarowski said:
Thanks for your honesty in this post! God’s plan is always way better than our dreams. I love that you are displaying such Christ-likeness through this adoption; it is the ultimate human example of what He did for us! Many prayers from one special needs mom to another.
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April 27, 2011
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Megan said:
Rachel, thank you for sharing this. I am so grateful for your prayers.
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April 27, 2011
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steph said:
This is such a beautiful picture of what The Gospel is all about! Thank you for demonstrating the love of Christ! I have no doubt that countless lives will be changed because of your incredible heart.
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April 27, 2011
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Julie Armstrong said:
Megan,
As a Mom of five, including one adopted child from Ethiopia (though our son was 7 years old when he came to us), I want to encourage you that ALL adopted children are “Special Needs” children. The moment God called you to adopt, He called you to a “Special Needs” child.
Adopted children – whether they are adopted as infants, teenagers, or somewhere in between – have all sorts of “special needs” because before they were adopted, they were orphaned. And being orphaned leaves all sorts of scars. Especially those who are orphaned in desperately impoverished parts of the world. These children have a life experience that is simply “different” from those of a child who is raised with his or her biological parents in a loving home – and THIS is what makes them ALL “special.”
Over the course of their lives, these children will have needs that present as physical, medical, emotional, relational, psychological, or spiritual. They will be revealed to you in time, but you can be sure that God will equip you to shepherd your child through each one – just as He has provided you with such excellent medical care for this one.
So, good for you, Megan and Joel, for continuing to see God’s hand in this child’s life, and for your obedience to His call on yours. You do, indeed, have TWO “special needs” children.
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April 27, 2011
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Megan said:
Julie, excellent point. You are absolutely right. Thank you for your valuable insight.
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April 28, 2011
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Gail Hyatt said:
Well said. And I’d like to focus on the “special” part. They are unique, special and individually loved. God will indeed provide all that is necessary for you to love them to the fullest, regardless of what challenges present themselves. That’s the kind of God he is and that’s the kind of parents you are.
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April 27, 2011
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Kim Bruce said:
Your mom told me about this possibility while we were on the cruise. I’m sorry that you and your sweet boy will have to go through this. But, I’m so thankful that the Lord gave him to you two…a couple who already sees him with the eyes of Christ and loves him with Christ’s sacrificial love. I wish we lived closer so I could know you better and be able to walk more directly through this time with you! Blessings on you, Joel, and ALL of your kiddos!
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April 27, 2011
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Megan said:
Kim, aww. thank you so much. I wish we lived closer too! We are sorry little J has has to go through this too, but we are trusting God will provide for us all every step of the way. Hope our paths will cross soon.
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April 27, 2011
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Amanda said:
Megan, I am inspired by your faith and your trust in God’s plan for you and your family. I can’t wait to meet those sweet boys! Our prayers continue for you all.
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April 28, 2011
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Holly said:
Megan-
You are an awesome mom! I can only imagine how much your heart is swelling in anticipation of meeting your boys. Many prayers as you continue on this amazing journey!
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April 28, 2011
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Donna Earnhardt said:
He will know he is loved by you – his family! He will be cared for by the best doctors- what a blessing! And as he grows in to an adult, he will grow to love others and care for others in the same manner he has been. WHat a legacy!
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April 28, 2011
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Dennis said:
As an African-American I grew up with two children in the community who had sickle Cell. Had they not told me I probably would not have noticed on my own.
God has shown his faith in the two of you by choosing you for these boys. You have shown that God was right by not backing out when the journey took an unexpected turn. You are already a blessing to the boys and to those with whom you have shared your journey. While the road may have rough spots I am sure God will repay your faithfulness with abundant blessing.
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April 29, 2011
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Dawn said:
Megan,
If ever there were a pair or a family so fit for these children it is yours. I reared up knowing you’ve continued in your journey as God has planned it. Each life is a gift and you have great and loving church family to be with you each step of the way .
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April 29, 2011
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Chandra Hester said:
Megan, I am soooo sad to read about sweet baby J. He can do what u can’t do. That’s why we call Him- GOD
My daily gift to you- my prayers for you.
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May 1, 2011
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KKSorrell said:
Baby J. is already blessed by your love and prayers, and I’m sure he will be a blessing to you – sickle cell anemia or not!
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May 29, 2011
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Kim D. said:
Megan,
On the day you posted this, we finalized the adoption of our African-American daughter. She came to us through foster care and in January, when she was 6 months old, we found out that she has Sickle Cell Anemia (Hgb SS). We were suprised by the number of people who asked us if we were still going to adopt her. Giving her up wasn’t going to make the Sickle Cell go away! Without a doubt, we know that this child is our daughter, chosen by God to be in our family. This is the road we need to be on. Sometimes it is scary, sometimes my heart breaks. That is no different than for a child that we might carry in our womb.
God bless Baby J and keep his body strong. Lord, bless all the Baby J’s and Baby Z’s that suffer from this disease. Fill us with the wisdom and faith to trust You through it all.
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June 1, 2011
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KKSorrell said:
Hey I found out today that we have a third grader at my school with sickle cell anemia. HIs teacher said that the only symptom she’s noticed is that he is more tired after playing outside than the others. Otherwise he fits right in!
I know there is more to it than just that. Medications, other complications, etc. But it just tells you that a child with sickle cell can have a mostly normal life!
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June 14, 2011
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Lara said:
Hi Megan, I’ve “seen” you on the UG boards, and somehow just stumbled on this one post (first time I’ve seen your blog!) Funny because we just found out our little one in UG has Sickle Cell Anemia too.