Written April 16, 2017
I have been thinking out this post in my head for a week now. I am fully trusting the Lord to use these thoughts and words from Him to change your life as they have mine. Ten days ago our life changed forever. Our family of four became a family of 5 in an instant. Not much preparation. No third trimester to nest and get everything perfectly “ready” to bring home a new baby. With the grace of God we are doing well. We are all adjusting to our new normal as well as we can be.
Reid Samuel Tomlin joined our family on April 5, 2017.
Although it’s not legal, we have given him this name as our son that we anxiously await the day we can make it final. The day we can officially put our stamp on him. The day we can officially adopt him into our family. Lord willing, that day will be in October; 6 months from the day he joined our family.
Many of the details surrounding Reid’s life will remain private for some time as there are confidentiality rules we must follow. What I can tell you is that Reid does have a major congenital heart defect. One that will never be cured. One that will require additional open-heart surgeries throughout his lifetime. One that will require lifelong cardiology follow-up. One that could take his life at any second, without any warning. . Yes, you read that correctly. Something so beautiful, yet so fragile. Unable to care for himself or communicate to us that something is wrong. Yet, in his life, we see so many similarities in ourselves as humans. Unable to accomplish anything in life apart from the help of someone. Unable to live without full dependence on something else. The Lord is using the life of this little guy to teach us more about the truth of himself. To the Lord, these are just minor details.
His heart condition is rare, yet in my line of work, something we see often. It is estimated that 70% of babies born with this heart condition will live into adulthood. Twenty to thirty years ago, these babies did not survive. Now they have a good chance at living at full life, although not without struggle. The Lord really has a sense of humor. I can remember after I had Emma and Will, my life was consumed with worrying about their well-being. I remember just watching them breathe or checking on them frequently during their naps. Grasping to control anything I could to try to prevent anything horrible from happening to them. I was unable to see the reality of the fact that nothing I could do would stand in the way of the Lord fulfilling his purpose for their lives. That meant that there was I could do to ultimately save their lives. If the Lord was going to take them home, there is I could do to stop it. This fear of losing a child consumed me to the point of panic attacks at times when they were newborns. Such a horrible feeling.
And now I have a child that could die at any moment, for no obvious reason, and yet I have a peace that surpasses all my understanding. I would say for the most part, I have felt fully supported by the vast majority of people that understand what we have chosen to do. Yet, I can’t help but feel that there are those that think I have completely lost my mind. This isn’t just a healthy baby we brought home to raise as part of our family. This is a baby that will require two more open heart surgeries, numerous heart catheterization procedures, lifelong medications, restrictions to what he can and can’t do. This is a huge lifestyle change. I recently read this article about his heart condition and was shocked to read this statistic….
The attitudes of care provider also will influence the decision of parents and it is interesting to note that technical capability to provide care for the patient does not mean that care providers would make the same decisions when confronted with a prenatal diagnose in their own family as shown by a survey published by Jacobs and coworkers in 2005 (36): more than two-thirds answered that they would recommend termination of pregnancy to their daughter (or son) whereas 73% of the same audience would recommend surgical palliation to their patients.
In no way am I sharing this to lay guilt on anyone struggling with this very decision. I only share to show the extreme reality of how serious this is. One of my favorite parts of my job is counseling parents when they find out they are having a child with a major heart condition. As heart-breaking as it is, I am also honored to be able to step into the lives of these people and help them begin to navigate a life they never dreamed they would have nor would they choose to. I get to speak encouragement into these precious mom’s lives about the beauty of their child and how God created him or her just the way they are. At the end of every conversation with these moms, I have always closed with the statement of “you know, I can tell you everything you need to know about the diagnosis, the treatment and the expectations of how things will go, but I can’t tell you what it’s like to live this with my own child.” I get teary thinking that I will never again make this statement. I am now living what they have all now experienced or what those in the future will experience. I will be able to empathize in a way that not many can. What comes as such a devastating shock, a loss of life as many “plan” it to be; it doesn’t surprise our God at all.
Psalm 139: 13-16
13 For you formed my inward parts;
you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.[a]
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
Lord, you knitted Reid together in his mother’s womb. All of his days are written in your book. What so many see this diagnosis as a death sentence or a life of suffering, I see as a life of living only by the power of God. I see it as a chance for the world to see how BIG our God is. When the world sees death, I see LIFE. Only God. You see Reid’s heart is just like every one of our hearts. Broken. In need of a savior for life. Life apart from God is destined for death. Every one of our days are numbered too. None of us will spend a second longer on Earth than the Lord intended for our life. That may be at 1, 10, 30 or 90. Sobering thought.
People ask how we can do this knowing what could possibly come. Well, my response is that all of our days here on earth are numbered. Only God knows the number of days, minutes and seconds we will all live on this earth. I certainly never imagined I would get cancer at 34. Nothing in life is certain, except the fact that God is for us. God is with us. I think if we all looked at life through these lenses, our lives would look much differently. The decisions we make on how to live our lives and spend our time would look much differently. The way we parent our children would look much different. We may actually walk out the things we talk about.
I won’t lie. My flesh is drawn to worry about Reid. My nurse brain wants to count how fast he is breathing. I still leave his pulse oximeter on while he is sleeping at night. I hold my breath every time he refluxes and vomits for fear that he could aspirate and have a cardiac arrest that I can’t save him from. But then the Lord steps in and his peace washes over me. Not a second of this life is guaranteed for anyone. So we have a choice. I was reading in Hebrews 10 this morning…. Verse 23…
“let us hold fast the confession of our hope without wavering, for he who promised is faithful.”
To waver means to become unsteady, falter, tremble. Here the bible is telling us to cling to the truth we say we believe. Let me break this down into simple terms. The bible is telling us here to not just talk the talk but to walk the walk. We say we believe that God is sovereign over every detail, that He is the maker of life, and that there is no circumstance in this life that he can’t change in a heartbeat. But does our life reflect these beliefs? If we believe this, then why are we drawn to worry? Because our flesh is sinful. Because we believe the lie that we can be our own God and control our life. Life apart from God. In that there is no joy, in fact there is only misery and disappointment. So we must choose to believe the Lord is good and he is for us and not against us. Last night, we went to church for Easter service. I frequently need the reminder that there is NOTHING I can do to earn my salvation. There is nothing I can do to control the ultimate outcome of my life or the life of my loved ones. All that Jesus wants from me (us) is to lay down my “YES”. Then in that moment He steps into that space and begins his work. Then He gets the glory. All the Lord is asking for is our obedience to what He calls us to. That will look very differently for all of us. I certainly wouldn't have asked for cancer or to have a medically fragile child. But that's where the Lord has placed us. I've said many times, there's no other place I would rather be than walking in the will of God. I've not been there many times and I never want to be there again.
The Lord purposefully placed Reid in our lives. It was no accident. Probably better that way too. It didn’t give us time to mull over what life might look like. He laid it out there, he laid out the opportunity for Cory and me to lay our yes down. He very clearly said, I want this baby to be yours. So we said yes. We have no idea what this will look like. Here’s what we do know.
In your presence there is fullness of Joy. Psalm 16:11
I’ve said this many times, but cancer taught me that JOY is not dependent on circumstances. Happiness is. But Joy comes from the Lord only. There can be joy in any circumstance. So every day we will continue to say “yes” to the Lord. We will raise our kids to the best of our ability. I have cried several times just sitting back watching how Emma and Will have accepted Reid into our family. They love him dearly and have not for one second wished he wasn’t there. No jealousy, no fighting or any ill will towards him. Believe it or not, this little guy is doing more for us than we are doing for him. So for that we are thankful for this opportunity. We get the honor to forever change the life of this precious little boy. Generations of sin and brokenness can be broken in his life. We get to teach him about Jesus and his saving power. Both physically and eternally. We are giving him a chance at life that he otherwise wouldn’t have had. For those reasons, it is worth it. He is worth it. My life is not more significant than his. Jesus sees us all as worthy of his saving power. I am thankful the Lord has shown me a part of my heart I never knew existed. That place was perfectly carved out for Reid. My heart is so full. It is just how it should be.
So what next? Reid will be having another open-heart surgery this summer. We aren’t sure of the exact timing, but it will be in June or July sometime. Until then, he will have frequent follow-ups with his cardiologist. I am so thankful for the team and co-workers of mine that are caring for Reid. I have full trust in his cardiologist and my partner nurse practitioner. Right before we took Reid home, Cory was able to pray over Reid with his medical team and our family. For wisdom, for endurance, for healing. We will continue to pray that Reid would be healed every single day. That not a moment of his suffering would go to waste. That it will carry weight in eternity for the glory God will receive. We pray for his birth parents salvation. We pray that their lives wouldn’t be marked with guilt and shame. We pray that one day they will see the Lord’s grace extended into their own lives. We pray that they will feel peace about Reid and know that he is greatly loved and cared for.
So what can you do? Pray without ceasing.
· Pray for his healing.
· Pray that his stupid reflux would get better.
· Pray for his medical team and surgeon – for wisdom to make the best decisions regarding his care.
· Pray for Cory and I’s endurance. He is such a good baby but it’s a lot. We are settling into a routine, but it’s a lot.
· Pray as I go back to work later this week. I am already so sad at the thought of leaving him, but life must go on. For now, Cory will have him and we are trying to get him set up for home nursing to come to our house to help care for him.
· Pray that people will come to know Jesus through Reid’s life.
· Pray for Cory and I to have wisdom to make decisions about our family and how best we should structure our lives to care for Reid. There may be some major life decisions that need to be made. Lord, guide our decisions.
· Pray for Emma and Will. To continue to adjust well to this new addition. There are so many things that will change now, especially this summer with his upcoming surgery. Pray that they don’t see what they may miss in things we typically do in the summer, but that we can help them see the bigger picture.
Thank you to everyone for the texts, calls, messages and emails of encouragement. For the meals. For the gifts. Not one thing has been taken for granted. Maybe one day I will get thank you notes out, but if not in the next year, know we love you and are so thankful for you. We have felt every single prayer. Keep them coming. The Lord is good. We are trusting Him with our lives. We are believing that He is doing BIG things through little Reid. We believe that He is faithful to carry out the plans ordained for his life. No matter how long that may be. Lord, you are good. May every second of our lives be lived for YOU.
Jesus, this is all for you. Every single second. You are worth it.