A look back: Where I am, 2 years in


This post came through my news feed and it is just as true today as it was five years ago when I wrote it. As we adjust to new normals, God’s Word remains true and steady, even if my feelings waiver. 


November 2011:
October came and went this year with no mention of it being two years since our diagnosis. And, that is just fine with us. As we settle in to this lifestyle, we have learned to really embrace Sanfilippo as a welcomed friend more than an intruder. Let me be very clear. It pains me to see Jayden regressing. It hurts to see Brooklyn still progressing, knowing those skills will soon be a memory. That is my human desire talking. But, I can spend my days counting down till we lose them, or just embrace them while they are here.

And, although we may never have answers this side of heaven as to why God made them this way, we have gotten to a point where we actually see the many blessings hidden in Sanfilippo. Our children’s salvation is secure. They will never be a part of this awful world. They will never hurt someone’s feelings. They will never judge anyone. They never have to work and have a crummy boss. They never will have their heart-broken. They will never complain that they don’t have this or that. They will never think life is unfair. They will never talk back, get in a fight, or cause a car accident. I will never have to worry what they are doing out past curfew, whether or not they are hurting themselves, partying too much, or being fake at school. They will live their life as a blessing-always living in the moment. They will fade away slowly from this earth, only to lean more into their real home-heaven.

If we believe heaven is better than here, why do we think death is so bad? I get that is sucks for the people we leave behind, but I can’t wait to go there and see Jayden and Brooklyn restored….for me to be restored, and in the presence of God. What an awesome thought.

Further, in the last 2 years, God has taught me to embrace Psalm 139 in a new way. My kids were made just the way He wanted. He didn’t fall asleep on the job, or make a mistake. He wanted them just the way they are. And it isn’t the way I wanted them at first, but the more I ask God to make my desires His desires, I see snapshots of His plan. I actually feel weird that I am seeing my children more like God sees them and not the way the world sees them. I feel guilty, like I am a bad mom if I don’t whine about what they can’t do all the time. Isn’t that what I am supposed to do? I feel bad if I like that they are the way they are. A good mom wants their child to be normal, right? I feel pressure to want them to be a part of this world. But for me, those are just lies. And the more I embrace them-the more I feel freedom in loving them better.

I blogged about a party I went to with a bunch of 5 year olds. It was hard to see them doing what Jayden doesn’t do, until I looked at him. He was so happy in his own world. Content. At Peace. Loved. Accepted by the only people who matter. THAT is the life we all want and my kids have it. It’s just not packaged the way we all want to see it. I think everyone would be happier if we all had Sanfilippo. I think we would all be better if we stopped hoping people with special needs were more like us and started wishing we were more like them. My children are not less than, they are more than. May I be so bold to say I think they are better than normal in so many ways. A true gift.

I am reminded of 1 Samuel 16:7 But the LORD said to Samuel, “Do not consider his appearance or his height (he was big and strong), for I have rejected him. The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart.”  My kids are just different from the world and we Christians are called to be just that. We without Sanfilippo have more to let go of…where they were never holding the things we have to lay down. In a way, they have already died to so much of the world because they never had it in the first place. Matthew 10:39  (NLT) says  If you cling to your life, you will lose it; but if you give up your life for me, you will find it.
I am also brought back to Romans 12: Place Your Life Before God (MSG)
1-2 So here’s what I want you to do, God helping you: Take your everyday, ordinary life—your sleeping, eating, going-to-work, and walking-around life—and place it before God as an offering. Embracing what God does for you is the best thing you can do for him. Don’t become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You’ll be changed from the inside out. Readily recognize what he wants from you, and quickly respond to it. Unlike the culture around you, always dragging you down to its level of immaturity, God brings the best out of you, develops well-formed maturity in you. 
3 I’m speaking to you out of deep gratitude for all that God has given me, and especially as I have responsibilities in relation to you. Living then, as every one of you does, in pure grace, it’s important that you not misinterpret yourselves as people who are bringing this goodness to God. No, God brings it all to you. The only accurate way to understand ourselves is by what God is and by what he does for us, not by what we are and what we do for him. 
4-5 In this way we are like the various parts of a human body. Each part gets its meaning from the body as a whole, not the other way around. The body we’re talking about is Christ’s body of chosen people. Each of us finds our meaning and function as a part of his body. But as a chopped-off finger or cut-off toe we wouldn’t amount to much, would we? So since we find ourselves fashioned into all these excellently formed and marvelously functioning parts in Christ’s body, let’s just go ahead and be what we were made to be, without enviously or pridefully comparing ourselves with each other, or trying to be something we aren’t. 
6-8 If you preach, just preach God’s Message, nothing else; if you help, just help, don’t take over; if you teach, stick to your teaching; if you give encouraging guidance, be careful that you don’t get bossy; if you’re put in charge, don’t manipulate; if you’re called to give aid to people in distress, keep your eyes open and be quick to respond; if you work with the disadvantaged, don’t let yourself get irritated with them or depressed by them. Keep a smile on your face. 9-10 Love from the center of who you are; don’t fake it. Run for dear life from evil; hold on for dear life to good. Be good friends who love deeply; practice playing second fiddle. 
11-13 Don’t burn out; keep yourselves fueled and aflame. Be alert servants of the Master, cheerfully expectant. Don’t quit in hard times; pray all the harder. Help needy Christians; be inventive in hospitality. 
14-16 Bless your enemies; no cursing under your breath. Laugh with your happy friends when they’re happy; share tears when they’re down. Get along with each other; don’t be stuck-up. Make friends with nobodies; don’t be the great somebody. 17-19 Don’t hit back; discover beauty in everyone. If you’ve got it in you, get along with everybody. Don’t insist on getting even; that’s not for you to do. “I’ll do the judging,” says God. “I’ll take care of it.” 
20-21 Our Scriptures tell us that if you see your enemy hungry, go buy that person lunch, or if he’s thirsty, get him a drink. Your generosity will surprise him with goodness. Don’t let evil get the best of you; get the best of evil by doing good. 
Where does it say, conform to the world? Nowhere. So if God made Jayden and Brooklyn, I have to conform to how He sees them and I am starting, after 2 years, to really appreciate it. I wish everyone was open to the gift that a child with special needs brings. I am grateful that God has chosen me to see such a beautiful side of heaven through my children.
2016 Follow Up: It is hard to see Sanfilippo as a welcome friend these days. I am squinting it see it from this perspective. I am trying not to count the days, but as they get closer, the harder it is to stop counting, even though I have no idea what number to count to.
Truth is just as real as grief.
I am still grateful. Will I forget all that I have learned? Sanfilippo forces me to stay focused. Maybe that’s another reason I don’t want to lose them. I fear the day I don’t have Jayden and Brooklyn reminding me anymore.

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