Congenital Bilateral Perisylvian Syndrome

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After Max Was Born

You Can't Ignore People

After Max was born in the back of an ambulance, they continued driving down the road to the closest clinic, Granby Medical Clinic.  I was happy – my baby was born, and the pain was over.  They put Max on oxygen, but the mask was too big for his nose and mouth, so it literally covered his entire face.  They finished checking me out and loaded Max, my mother and I back into the ambulance and we headed to Lutheran Hospital in Denver.

At Lutheran’s they checked us in and put Max in the neonatal intensive care unit (NICU), because he was 4 ½ weeks early.  When I was able to get out of bed and visit him, I went to the NICU and tried breastfeeding, but he wasn’t interested.  At this point, the nurses told me that he was struggling with eating and would only drink a couple cc’s at a time (5 cc’s equal a teaspoon).  They also told me that if his eating didn’t get better, they would have to put him on a feeding tube.  I was scared and began praying.  My mom was by my side the entire time, and prayed with me as we sat and tried patiently to get Max to eat.  Within the next 2 days, he slowly started eating the normal amount, began breastfeeding and we were able to go home.

Because we live at an elevation of nearly 9,000 feet, we went back to the clinic and got his pulse-oxygen level checked.  The first night he was fine, but the next day I noticed that his lips were blue.  I called my mom and she told me to bring Max to the ER immediately.  They ended up putting him on oxygen, and for the next 4 ½ weeks we were carrying around an oxygen tank so that Max could breathe.

Over the next year and a half, I noticed that he was slower than other kids when it came to crawling, walking, talking and eating.  My mother (who works in the medical field) told me that she thought something was wrong, but I didn’t want to believe that.  I told her that he was just behind, but he would catch-up, and he did with crawling and walking, but his feeding and speech stayed behind.

I remember at 18 months I was still feeding him baby foods, and he would still struggle and choke.  He wasn’t saying the normal “mama” and “dada” that most babies say.  I was scared, I knew my mom was right, but I had a hard time admitting it.  There was no way that something was wrong with my baby.  I was the mother that did everything right when I was pregnant – no drinking, no smoking, no caffeine, taking prenatal pills… basically everything that my OBGYN told me to do.  I knew plenty of other young mothers that had done everything wrong and their babies were fine, why would there be anything wrong with my baby?

I finally gave in.  I couldn’t be responsible for not getting him help when he needed it.  I made an appointment with our pediatrician and he referred us to Children’s Hospital Colorado where they diagnosed him with Cerebral Palsy.  I was terrified and felt bad for Max.  I felt responsible for hurting him and giving him his condition, but everyone around me kept saying, “God only gives these types of babies to people who can handle them”…  what the hell does that mean?  Is it something nice you say to someone when they find out their kid is disabled?  What are these types of babies and how does God know I can handle this?  I had all sorts of thoughts running through my head and was overwhelmed with the next steps that Children’s Hospital Colorado had us signed up for.  We had genetic tests, feeding studies, swallow studies, occupational therapy, physical therapy and everything else that I forgot by now.  It was overwhelming to say the least, but we got through it.  I did everything I could to make sure that Max got all the help he needed.  I was back in college at this point, working and running Max to every appointment that I could.

The swallow study found that he aspirated his fluid, so they had me put him back on formula and use a thickener so that he wouldn’t inhale it into his lungs.  We carried on this process well until he was almost 4.  I remember being in the grocery store when Max was around 3 and the lady behind me mumbled to the lady by her, “Oh my gosh, she’s so irresponsible.  She still has that baby on a bottle.”  I was livid.  I turned around and shouted, “You’re right, I’m the irresponsible one.  Did you know that if he didn’t receive his food out of a bottle he would die?  Did you know that I’ve never even heard my baby say mom?”  I was so pissed off, I didn’t even cry (that came later), I just turned around paid for my groceries and left.  To this day I wonder if that woman learned her lesson for assuming that she knew what was going on, because I still remember her.

Max’s first word was “uh-oh.”  How cute is that?  His second word was “moo,” which he would say when he pointed at the moon.  These first few words came out when he was almost 4, and I remember jumping up and down as he said it and the smile on his face for seeing how proud I was of him.  My baby finally talked, my baby finally talked, I finally heard my baby’s voice!  It took him a while to say “mama,” but that was okay, because at least I knew that he knew how to communicate – he knew what those limited words he did use meant.  I think right around this time he started eating baby food too.  It had to be processed, but he was finally eating without inhaling it into his lungs.  He still wasn’t potty trained (that wouldn’t come until kindergarten hit), but he was making baby steps to eating and talking and that was important.

Over the years we continue to get snide comments from people, especially when we are at restaurants and he tries to order food.  He usually tears up and looks at me to finish his order.  The world doesn’t have time for someone who has to think through every single word before they come out – Max takes a lot longer than the rest of us to get a sentence out, even then, it’s pretty hard to understand.  The world doesn’t know how to tolerate someone who can’t talk – people usually talk over him and never give him time to reply.

The world doesn’t take the time to stop and listen.

But I can tell you this… Max has taught me more patience than I ever could have expected.  He’s taught the people around him how to slow down.  With his beautiful smile and glaring eyes, he’s captured people’s hearts and taught them how to love like they’ve never loved before.

Through his eyes, I have learned what love really is.

(Photo Credit)

 

3 Comments

  1. Max sounds amazing, and you are an amazing mom. Thanks so much for sharing your story.

  2. When my 13 year old daughter Savanna was born, she was like max. At 2 years old, she was having trouble walking, and she rarely talked. Doctors were sure she had Cerebral Palsy, but at 7, she was diagnosed with a minor heart defect, whoch landed her in the hospital for 2 months. After 2 months, she got half better, but was on a heart monitor 24/7 for a month. When she was 9, it turned into a major heart defect which landed her in the hospital for about 2-3 weeks a month. When we were in the hospital almost 2 months again that September, it got so bad, they decided to keep her and put her on the transplant list. After 4 months, she got a successful transplant and wwas fine until she was 12 going on 13 she was always fainting and having trouble breathing, doctors thought it was best that she was on oxygen(the tube that goes up your nose, not the mask) 3 hours a day, and a sleep apnea macine at night. Test after test, nothing abnormal was found. In late April this year, she was diagnosed with stage 2 lung cancer and if she didnt get a transplant soon, she was going into stage 3 or not going to live much longer. At that point, I was so stressed, I was in the hospital a few times due to nervous breakdowns, or breathing difficulties. Me and my husband thought it was best to send my 9 year old son to stay with my husbands sister during this time, because he was getting stressed and we didnt want him to witness this. On June 2nd, Savanna had a left lung transplant, because the cancer was mostly in her left lung, and went home on the 14th. She has been perfectly fine, and my son is now back with us and lie is back to normal. Sorry, I share my story sometimes to show people they are greatful to not have to be be spending time in the hospital with your young daughter almost 3 times a month for 5 years. Please be greatful that Max dosent need major surgeries like Sananna did, I felt like you are not but 10x worse. I was so scared that my daughter may pass away any minute. You did nothing wrong, neither did I. I will keep you and Max in my prayers. Best wishes, Christine and Savanna Maverita.

  3. @Christine,

    Thank you for sharing your story – it’s the reason I began this blog in the first place. My heart goes out to Savanna, and so does Max’s (I read it to him). I hope that she stays well and please keep us updated.

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