Tag: faith

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down syndrome

Good Friday Thoughts in the Hospital

I am currently sitting on the bench at the back of my son’s hospital room. Three days ago he had open heart surgery to correct a his atrial ventricular heart defect. He has just had his breathing tube removed and he is doing great. During that procedure however, I was not. I stood frozen in the door way, hands covering my eyes even though I was peeking through. I was unable to help my crying little baby while 4 nurses and a doctor huddled around him to ensure he was doing fine as they took him off the device that was making sure he kept breathing. The doctor turned around once he was satisfied, saw me and said “Oh my goodness mom, don’t worry, he is doing great. Crying means he is breathing.” I tried my best to keep my face positive, but it was taking everything in me to not want to push everyone away so I could scoop up my little guy and comfort him. I waited patiently until they told me I could come in to soothe him; I gave him his pacifier, let his little hand grip my finger, stroked his cheek (the little space not covered by his new oxygen mask) and spoke my love all over him.

The weight of the difference of how my heart was feeling compared to the day when I found out Ben would have down syndrome crashed over me. The love a mother feels for her baby is the truest form of unconditional love I think exists in the world. That is what I wish I could go back and jam into my brain 10 months ago. I wish I could make it where nothing else mattered to me than other than the pure well being of my child. I was devastated over something that has now been replaced with a bursting love that can’t be contained. A love that makes me cower in the corner terrified of the object of my affection experiencing any type of pain. A love that makes me want to tackle someone to the ground so they stop inflicting pain on my baby.

I was so afraid of what this life of special needs would look like, and there is still so much that is a big, fat unknown, but what I know now, that I didn’t know then, is a love that would wash over it all.

That, my friends, is EXACTLY how Christ loves us. In fact, his unconditional love goes even a step further. While my fears and doubts have been all speculation over Ben’s life, Christ knows my shortcomings and ugliness in my heart, He knows every misstep and failure and He took the blame. Just as I want to throw myself into Ben’s place and take all of his pain, Christ has already done that for me. He paid my penalty for sin, through death on the cross. He has washed me and made me new.

Good Friday is right around the corner and this is what we remember. I had always heard that having a child teaches you more about Christ’s love than anything else, and that is oh so true. He is good to be there to reassure me where I fall and reminding me of His promise. That in three days He rose again proving He conquered death and promising to do the same for me. There is nothing that I could do or nothing that would happen to me that would make His love and promise fade. I can just imagine Christ is standing there heart aching when I am in pain through anything and everything that pulls me away from Him, and I can reach out to grab His hand and let the love of Lord wash over me.

Christ saw me in the midst of my sin, in the depths of my pain, in the middle of my weakness and said, “I want her, exactly her.” That is what Ben has taught me. In the middle of his pain, in the middle of his weakness, and all of his body – extra chromosome and heart defect – I am saying “I want him, exactly him,” and there is nothing that would change that. I used to be annoyed by things I would read by other mom’s of children with down syndrome when they would say something to this effect, because I felt like it couldn’t be true. How can you not wish that your child’s DNA was “correct”. But today, in this moment of feeling in my heart was completely on that little hospital bed I understand. I love Ben completely and wholly and unconditionally, not in spite of his diagnoses and needs, but because he is Ben.

And Christ knew us completely and wholly and unconditionally gave himself up for us. Remember these truths this week as we remember the Christ’s sacrifice as the truest and purest form of love.

But God showed his love for us, that while we were still sinners, Christ died for us. – Romans 5:8

Categories
down syndrome

Living by Faith

Tonight is the eve of World Down Syndrome Day, and it is the first year I have ever actually known of its existence. I now tally this up to ignorance and a general “head in the sand” experience I have had to anyone who is vastly different than me in the past. Leading up to this day has been a mix of emotions for me. I have enjoyed seeing the new community I have been thrust into, celebrated so beautifully. I have heard countless stories of many family’s experiences, and how children and adults with Down syndrome are thriving as they navigate this crazy life. But I have also experienced a heaviness. A heaviness of uncertainty.

Today, on the eve, I have even reached the point of tears, flat out not wanting my family to have to deal with all of the medical issues that my son, Ben, who has Down syndrome, is currently experiencing. Yesterday we had an appointment with his cardiologist confirming that there was not any improvement to his lung pressures making it necessary that his heart surgery be preformed sooner rather than later. He will be starting new medication with some scary potential side effects. All of this to say, I am trying my best not to be worried, but it creeps in like an ugly virus threatening to consume all of my thoughts.

So today was a day to let it in, to cry, and to try to put some of those feelings behind me. A wise and dear new friend told me today, when I let her know that I was not having a great day, “We are allowed to have these [hard, sad] feelings, but we can’t stay in that place.” It got me thinking, what does it look like to feel emotions, but not to stay in them. I believe it looks like 2 Corinthians 5:7.

For we walk by faith, not by sight.

My emotions of fear are rooted firmly in not knowing the outcomes. Whether the outcomes I fear are Ben’s surgery in a few weeks, concern for his social experience in school in a few years, or wondering about his independence as an adult, all of it is unknown.

The next steps I can take into a vast sea of unknown outcomes are steps of faith. The way I move beyond the waves of fear that threaten to swallow me is to let go and say, “I don’t know, but I will keep walking.” I will keep waking up and snuggling the lovely little boy entrusted to my care. I will not allow my fears to be what drives me and my decisions, but to allow faith to carry those burdens of concern.

In second Corinthians 5, Paul is addressing the members of the church, warning them about the evil that seeks to devour them and encouraging them to lean into their faith:

6 Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. 7 Cast all your anxiety on him because he cares for you.

8 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lionlooking for someone to devour. 9 Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen.

Reading these reminders have empowered me to not allow what is difficult to consume me. The world suffers. Whether it is the loss of a loved one, loss of security in a job or a home, pain in either mental or physical ailments, or in unexpected news like my family has recently experienced, the enemy seeks to use all of these things to cause a person to lose hope. Even when I do not know what lies ahead, living by faith, I am combating the lies that the enemy tells me.

The enemy tells me I am not enough for Ben.

But Yahweh in me, is enough. (2 Corinthians 13:5)

The enemy tells me that I should fear the worst for Ben’s medical care.

But Yahweh holds Ben in His hands and His plan for Ben’s life is already set. (Job 42:2)

The enemy tells me that I am alone.

But Yahweh holds me close. (Romans 5:8)

These truths chase away the darkness in my heart and mind. They allow me to breathe in and rest when fear should overcome me. They allow me to rejoice in this new holiday I will celebrate for the first time tomorrow, even when I cried over that same Down syndrome today.

May living by faith continue to make me infinitely stronger than living by my sight.

Happy 3/21 World Down Syndrome Day, to you. Wear your crazy socks tomorrow and celebrate this corner of the world that you may know nothing about.

Categories
down syndrome

Finding Rest

The past few weeks have been interesting ones. I think whenever we have trials in our own lives, it makes us more sensitive to other people in our lives. I find myself able to read other people easier, or when I reach out and ask for prayer, I get a list back of things to pray about for the other person.

I am learning to see what a great blessing this has been for me, while I have been experiencing pain. I have found great rest in community of saying, I too have been hurting. It has allowed me to take my eyes off myself for a moment and push my arm under the load a friend is carrying and try to make it a little lighter.

Over the past three weeks, I have made a new friend who has received an atypical pregnancy diagnosis, who knew about my own because of a prayer group she is a part of with my sister. My heart leapt at the opportunity to love on this acquaintance of mine because we instantly had a connection in brokenness that I have not been able to create with others who have not walked this path. I found myself wandering around TJMaxx just hours after I received a text from her explaining her situation, looking for small comforts in a candle, a journal, a fluffy blanket. All things that I know could not fill the instant heartbreak she was experiencing, but something I hoped would let her know, I saw her, and I wanted to be there for her.

I have had another friend quietly ask for prayer in return after I asked her for prayer. I have a feeling it was hard for her to ask feeling that her experience and heartbreak was somehow less than mine. Again, my heart instantly latched on, though her experience is vastly different, her mama heart was still hurting for her baby. We talked and cried and held each other. She has been my great confidant in this whole experience and again, that connection blessed me.

Yet another friend casually made a joke about not being in a good “head space” about her self-confidence, when we were out to dinner with a large group. Normally I think my mind would have pushed this off as another sarcastic remark, not worth my time to investigate. But my heart again reached out. I pushed her to tell me more and she reached out a few days later and explained. We talked again, I cried for her and tried to send as much encouragement as I could.

In all of these situations, I can’t help but turn into my faith that I know has much stronger merit, love and encouragement than I could possibly have on my own.

Galatians 2:20 reads, I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself up for me.

I am able to be MORE than I can be, not because of extra efforts on my part or because I TRY to be a good friend, but because He is infinitely more than me. My faith allows me to surrender all of these things that are brought to me, along with my own trials and say, “Not me, Lord, but you.” I live by faith, faith in the one who loved me so much he gave himself up. He is my ultimate comfort because where I fail, he stands. Where I am tired, He persists. Where I hurt, He heals.

Because He lives,

I can face tomorrow.

Because He lives,

Every fear is gone.

I know He holds my life, my future in His hands.

I pray in your own trials you are able to find great peace in the one who lives. I pray you are able to seek out other pain in the world and point to the cross and say “That is my strength and my hope. He is the reason, I can be more than who I am when I am broken.” Find rest in that, friends. He is infinitely more.