Headed to San Diego tomorrow
This week has been a whirlwind of preparation. Making sure we have the right and enough medications. Double checking to-do lists. Laundry. Cleaning. Paying all the bills before we leave. Laundry. Making sure the girls are taken care of. Talking to teachers, therapists, doctors to let them all know we will be gone. Laundry.
Then there is making sure that he is prepared for the procedures that we will undertake this coming week. My son, who has a severe genetic mutation, will be undergoing some pretty crazy tests out of state to see what is going on in his stomach. You see, his genetic mutation is newer. Only two twins in Italy have similar symptoms to his. What does genetic mutation mean? It means that we don’t know the scope of his disabilities. It means that we don’t know which parts of his body could breakdown or at what point. It also means that we can’t put our faith in doctors because they know almost as much as we do. It means that our hope and our strength lie in the One who formed him when he was in my womb. He is the only one who knows the complexities of our son.
I remember four years ago when our first official diagnosis came, autism. I was relieved. I actually felt like we could have support from a community of people who had gone before us. It felt manageable (cue laughter from other special needs moms). Then, the next diagnosis, heart condition. Then, seizures. Now, GI disorder. When we get back, possibly vision. Who knows what else. Doesn’t seem so manageable anymore.
How has God used Moses to teach me about life? Don’t hold tightly to your successes. Every breath is a gift. The joy of the Lord is my strength. I am weak but He is strong. Seeing the people of God love on someone who is hurting is a beautiful sight to witness. Do everything as unto the Lord, even if that means its hard. Contentment does not come in getting what I want. Hard things, the insurmountable things of life is where I see God most clearly. Struggle makes you brave. Disease or a disorder is not my worst enemy, sin is and God has already conquered that. Rest does not just mean doing nothing. I have idolized comfort over real community for far too long. And the list could go on.
Why do I share these things with you now as we are getting ready to embark on what seems like a traumatic nightmare? And trust me, I am not over exaggerating traumatic when my child hates to be touched. I share these things because I so desperately want you to know how good our God has been through it all! We have had our rough days, months and years, no doubt. I know that those rough days will return, ebb and flow. But that’s just it, they do lighten. The hard days don’t stay hard. And the hardness often shines a light to a path of greater depth in my relationship with God. The more we suffer, the more God widens our borders of influence so that He can receive greater glory. Does that mean I should hope for greater suffering? By no means!! It does mean though, that I do not have to fear it when it comes. It means that I can rest in knowing that just as much suffering means even equal or greater compassion and suffering.
I have cried many tears this week with the thought of what we will go through in San Diego. I have been tempted to and worried about what results will be, what will change. But, for now, at the end of the day I can rest in the promises of God. I had my mom help me write these out today to post around his room. I know that we are heading into an arena of anxiety and worry, fatigue, frustration. I have been in this hospitalization scenario, to some degree, to know how I will probably respond. I can be a little more prepared this time. THESE preparations are what really matters. We battle not against flesh and blood. Clean toilets won’t matter when we are getting results. Mopped floors won’t matter. Matched outfits for my girls. Home-baked goods. Those preparations won’t guard my soul, although I have heard from some that a clean house helps their mind. It won’t for me. Here has been the prep work that has breathed life:
- - Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He give strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint. Isaiah 40:28-31
- - Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. Joshua 1:9
- - May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13
- - So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen eternal. 2 Corinthians 4: something
- - You keep him in perfect peace who mind is stayed on you, because he trusts in you. Isaiah 26:3
- - I will turn the darkness before them into light, the rough places into level ground. These are the things that I do, and I do not forsake them. Isaiah 42.16
- - He gives power to the faint, and to him who has no might he increases strength. Isaiah 40:29
- - He will be the stability of your times. Isaiah 33:6
- - He will surely be gracious to you at the sound of your cry. As soon as He hears it, he answers you. And though the Lord give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you saying, “This is the way, walk in it,” when you turn to the right or when you turn to the left. Isaiah 30:19-21
- - Peace I leave with you; my peace I give you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. John 14:27
I know by now that we will be attacked from within during this hospital admission. It is scary because there are several insurmountable tasks ahead of us. The placement of a feeding tube. Other tubes placed after surgery and leaving them in. Not being allowed to have a sedative because it will affect the test results. Not being able to move for 8-10 hours. Oh did I mention no sedative. These all seem insurmountable. I actually called a doctor to ask, “Do we really need to do this?!!!” “Yes, this is the only way.” For a kid who has a rare genetic disorder, it is the only way.
But then, I also know that God will abundantly supply grace in our time of need according to Christ’s riches. So, God will show up. He already has in so many ways! So God will comfort. He already is! Keep praying. So, however deep the wound, God’s grace will run deeper. Our hurts, your hurts cannot outrun God’s grace! He wins. And I know this, I stand firm in this, because God gave of His only Son Jesus to show me that He would put it all on the table. He would go to the mat for me, for Moses. And my circumstances, my feelings cannot change that. I am not that powerful to induce that kind of change and there is freedom in not having that type of control. This will all end well, even if it involves an incredible amount of pain. Praise God almighty for that victory!!
- - That God would be his sedative.
- - That doctors would be wise.
- - Procedures would be successful and end quick
- - Results would be favorable
- - The tubes would be inserted and stay put until the proper time
- - That our little guy would have a real and overwhelming experience of God’s presence
- - That he would not be scared
- - That he would let people touch him
- - That our girls would feel lavished in love
- - That our home would be protected from attacks from the enemy
- - That nurses, doctors, janitors, child life specialists, anesthesiologists, volunteers would come to see the glory of God and be overwhelmed with God’s goodness found in Jesus
- - That we would be quick to give reason for the hope that we have
- - That we would be a beacon of light to other hurting families in the hospital
But, though He slay me, yet I will trust Him! Stayed tuned to see how God reveals Himself to our family and wins!! Rejoicing will come from this. It has to, or Jesus’ died for nothing. And trust me, He didn’t!