Take Root and Write

Milestones

 As moms, we are constantly measuring, recording & evaluating our kids. Then we take those measurements and compare them to the kids of our friends, siblings, fellow church-goers, strangers in the grocery. Always looking and checking to make sure our kids are progressing an acceptable rate, hopefully better, faster, quicker than their peers, but at least not too far behind.

 As moms of kids with special needs, it's a whole other story. We're not so much focused on how our child progresses compared to other children, but rather on whether they're progressing at all. Whether their growth & development is on par with how THEY should be (perhaps a slight comparison to other children with the same diagnosis, but mostly not). It’s amazing how, when you’re dealing with a life that is different in its development, how the simplest milestones are a big deal & the big milestones?? Are earth-shattering.

Due to having Down Syndrome, Henry was naturally slow in his development. He rolled over later, sat up later, crawled later - all of it. Which is difficult when comparing to neuro-typical children, but totally normal within his sub-group. The most difficult part? Watching children I knew who were born at the same time or after Henry pass him by.

When it came to walking, Henry was very, very delayed. We knew he’d be late, but we hoped that meant 18 months or maybe 2 years. When 3 came and went, we were frustrated, but kept reminding ourselves “Henry will do it when he’s ready”. Which turned out to be at 3 1/2, at summer school.

Blessed Be Your Name

I wanted to share about the time we almost lost Henry. It was the most horrible week of my life. In March of 2004, Henry was 4.5 months old and he got sick. At first, we just thought it was a cold. but he got worse. On Tuesday night, the 2nd, he ran of fever of 102.9. The next morning, I took him to the doctor. He looked awful - lethargic and extra-floppy, labored breathing, hot, coughing - the whole 9 yards. All I got from the doctor was that I needed to get my hands on some breast milk and give it to him. I KNEW he was wrong. I KNEW it was worse than that. He was about to send me home with a phone number for La Leche League, when I realized that he was very, very sick. I said, “y’know, he’s just not right. He’s SO lethargic and with the high fever last night…”

The fever finally registered with the doctor and he said I should take to Children’s Memorial downtown right away. By the time we got him down there, his fever was 104. In front of my eyes, the ER went into overdrive with him - his oxygen sats were in the 60s and they rushed him back to get him on oxygen, take blood and all that stuff. They were in a panic to get him into a room - I remember the doctor going on and on about it and asking over & over if the room was ready. Finally, it was & they rushed him upstairs to the PICU. he was in an isolation unit at the end of the hall with his own nurse. His tiny, floppy body was all naked with tubes and monitors on him & a big, huge, cast-like thing on his arm with the IVs to keep them from pulling out. He kept biffing himself in the head with it.

They then put him on a BiPAP machine so he could breathe.  It was so big & he was so small that it wouldn’t stay on properly. He’d let out these little mewling kitten cries from inside that were all muffled and pitiful. We were able to get his pacifier in under the BiPAP, which helped, but due to all the tubes & wires, I couldn’t hold or comfort him at all. I could only stroke him & talk to him from his cribside. I can now admit that I was terrified. Even with the BiPAP, his oxygen sats weren’t going up at all. They kept saying, “We’ll keep trying, but we may have to intubate.” which scared me so much.

On night 3, as I was sleep on a cot in the waiting room, I was awakened at 4 am by, “Mrs. Sturm, you need to come…” I SHOT out of bed, jammed on my clogs and ran behind the nurse, trying to clear my head. She tried to calm me by saying it wasn’t an emergency, but in my befuddled mind, you don’t wake somebody up at 4am unless it’s an emergency.

Getting to Joy - Pt. 2

“The parts of the body that seem to be weaker are indispensable…” 1 Cor. 12:22

This verse JUMPED out at me as I looked at the whole of 1 Corinthians 12. We’re all familiar with the idea of being part of the body of Christ and that we all have a purpose to serve. However, I think most of us haven’t given a lot of thought to how (or if?) people with special needs fit into that plan. Let’s see the whole verse.

The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. 1 Corinthians 12:21-26 NIV (emphasis mine)

I believe that we as the body of Christ aren’t doing a really good job with this, in general. Here’s an example. I noticed after Henry was born that, often, people were afraid to acknowledge him. I actually had a person come up to me at church saying that she would be praying that God would "heal" him of his Down Syndrome. As I was holding my 3 week old baby. She didn't even acknowledge his presence, just talked about him as if he had a disease that needed curing. I knew then and know now that she did not mean to sound the way she did. She was doing her best to support me and love me and say what she thought God wanted her to say. But it was wrong. There was a lot of that in the beginning. Not much in the way of "congratulations!!!" that other mothers got - but lots of hugs and tears and not a lot of recognizing that he was a person and was right there. It’s difficult, I know, for people who don’t know what to say. I understand that. And it’s hard for us as parents to barrel through our own feelings in order to present a calm, collected, joyful front to the world. So what do we do? How does God want us to respond?
 

Getting to Joy - Pt. 1

"Behold, children are a gift of the LORD, the fruit of the womb is a reward". Psalm 127:3

As mothers, we totally believe this. I don't know of any mother who looks upon her children as less than a blessing. After we give birth, we talk about weights and lengths and APGAR scores like they qualify as Ivy League admission. As they grow, we mark each milestone, compare and contrast their skills with our friends' children, nurture their talents and expect great things for them.

So, what happens when the child we prayed for turns out to be very different from what we expected? When the child is "different" or disabled or delayed? How do we reconcile our feelings with our faith? Because, let's be honest, all of us had at least a moment of feeling disappointed or angry or hurt or dismayed. I'm not saying we don't love our children fiercely. I'm saying that, because we're human, it's natural and understandable to feel negative emotions at the realization that our child isn't the way we expected. It's a natural, normal response and one that we have to work through to get where God wants us.

Back when my youngest son, Henry, was born, we were not aware of his Down Syndrome. In fact, he was two weeks old before we got the diagnosis. To say it was a shock would be like saying the Grand Canyon is a hole in the ground. Soon after, I wrote about it. I never wanted to forget it, so I wrote it down. Let me share it with you:

What a shock. It was so devastating to hear that he would never be "normal". Two weeks of complete ignorance - just thinking he was little & needed to eat - completely unaware of what was hiding around the corner.
I remember standing alone in that doctor's office as the doctor was finally able to examine him after the jaundice had cleared up. I watched him turn, lift, pull, move, poke, prod Henry all over & then just out of the blue said, "Has it crossed you mind that Henry has Down Syndrome?" Before it even registered, I said, "That's funny you should say that because I thought that in passing when I was looking at him one day, but that's all it was...just passing."
That's all I remember. A dull roar started filling my ears & all of my insides started roiling. It slowly, very slowly, started creeping into my consciousness and everything around me started crumbling. I don't remember anything else that was said, just the voice inside trying to keep the tears at bay because I didn't want the doctor to think I was a bad mother for being sad about it.
Then I had to go out & tell my mom who was with Steven in the waiting room. The noise she made will never leave me. It was raw & guttural - animal-like. A wounded moan. The weight of this was more than I could comprehend. It would be weeks before I understood. Weeks of testing, reading, researching, doctor's appointments and crushed dreams. Accepting that the dreams you've had for your child will never come true is gut-wrenching. Henry will never be president. Henry won't be a doctor. Henry may not go to college. Henry may never live on his own. Henry won't have children. Henry won't do a lot of things. That's hard to accept. The fact that he'll most likely need us to care for him for the rest of his life - that's hard. But I'm thankful. Thankful that he's with us. As hard as it's going to be, I wouldn't give him back. But it's going to be a rough road. Your existence has redefined true north for us. I guess it's our journey to find it again. With you as our compass.

Intro: Special Mom's for Special Kids

As a mom of kids with special needs, I'll be writing about the unique challenges we face every day. I'll be looking at how God wants us to raise all our children and how He equips us to handle the extra responsibility that comes with being a mom of special needs. 

By, {Looking for a New Writer}

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Column Posted 2nd Tuesday of each month. Also meets as a Group in CWTR HERE