Tag Archives: baby

We all need to be “Special Needs”….

Its been a while since I’ve posted anything. No reason really, just sometimes you don’t feel like writing. There has been a lot of shifting and changes that have happened in the last year. A lot of “stuff” going on. Stepping outside the whirlwind and looking at everything from the outside in can be helpful in order to gain perspective. I’ve had many conversations over the last few months about whats happening in Syria, Israel, Iran, Iraq, Pakistan,China, America, Japan, Canada, Mexico and so on. The one common thing I have taken away from every conversation is, when did we stop treating people like human beings? When was the decision made to “love” people from a distance? I’m guilty of this too. Not pointing fingers here, but if this does stir something inside of you maybe you should look at that….? I wonder what it would look like if we just loved on people with no agenda attached? None.

I watch my daughter get on the little short bus every morning for school. She has no agenda for the day but to just be in the moment. Every step she takes is another opportunity to see the beauty around her. She loves fiercely and without a second thought. She watches people intently and tries to communicate with them on their level, even if she doesn’t understand how exactly. She sings off the top of her lungs anywhere and everywhere we go. No, really, everywhere. She dances any time she pleases and doesn’t give a crap whose looking. When someone is sick, she is first in line to pray for them and is always asking about them until they are well again. When someone is hurt or in trouble, she cries with them or for them. If your heart broken, so is she. The interesting part about her is, we call her “special needs.”

Its funny that we call her a special needs child. She has taught me so much about how to treat people, how to slow down and how every person deserves a hug from time to time.  Now, there are bad guys in her world and this is reality, but she slows down enough to accurately see who is who. Kids do this. Kids have this way of loving with no agenda and seeing right through the crap. We get a hold of them and mess it all up.

I would encourage you, myself included, to slow down, take a deep breath and ground yourself in the moment. Whatever that may look like….at work, at a desk, in your car, at the DMV, at the park, at the grocery store, with your baby, with a sick relative, at Starbucks, wherever you are, just be ever present and watch how easy it is to connect with people around you when your agenda is checked at the door.

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A long way from home…My journey as a mom having a child with special needs. (part 1)

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On July 29th, 2003 My Kali took her first breath. She was perfect in every way. A chubby baby from the beginning. I love chubby babies! I truly believe it’s the only time its adorable to be chubby is when you’re a baby. Lets be honest here… She had a faint cry and didn’t really scream. Her sister was 2 and when she was born, she screamed. So that concerned me at first. Her scores came back perfect and her oxygen level was good, so I didn’t have a reason to be concerned…..or so I thought. My delivery wasn’t really a piece of cake and I had started to hemorrhage and bleed out. Now, I don’t really remember too much after that but I do remember a bunch of blood being rushed in for a blood transfusion and the Dr. and nurses rushing around. I remember 4 or 5 shots going into my legs to stop the bleeding. Meanwhile, I was more concerned with the faint cry of my child. I think they were able to get the bleeding to stop without the transfusion, but I honestly don’t remember and neither does anyone else. That’s how much chaos was happening at that time. You tend to block it all out and in that moment when your life is a huge concern, as a mother, your child’s life is more of a concern….always. We took Kali home and all was well until day 3. She was 8lbs and 13oz when we took her home and had lost weight since we brought her home. Completely normal, however, she had lost a good amount of weight. She started projectile vomiting. Ok, I’m not talking about throwing up a good distance; I’m talking about vomiting a good 4-5 feet. No exaggeration. I went in the room to take a nap and about 30 min later, my husband came rushing in with my 4 day old baby not breathing. She had vomited and aspirated it. She was blue. My husband was freaking out and I flipped out. I called 911 and started trying everything I knew to do in order to get her to breathe. I had even tried to pinch the bottom of her feet so she would let out a scream. Nothing. I just prayed and cried watching my 4 day old baby girl suffocate. I could hear the faint sounds of the ambulance in the distance. All of a sudden her color came back and she let out a scream.  My husband and I both were hysterical but trying to hold it together for our 2 year old. Her vitals checked out but her oxygen was still low for comfort. I got on the stretcher and carried my baby in the back of the ambulance. They put an IV in her and oxygen up to her face. Flipped her around like she was a rag doll checking all her vitals. We were transported to Loma Linda children’s hospital where we were there for 3 nights and 4 days. Little did we know that this was the start of many visits and stays at that hospital. They ran test after test after test on her little body. They took x-rays and didn’t let her eat. She was 4 days old, that’s it. The most innocent little baby and as a mother, I could do nothing. That’s the worst feeling in the world. She screamed for hours because she was hungry and hurt. She would only be soothed by me. So, I walked around the hospital children ward for 24 hours straight, bouncing her on my hip. It was the ONLY thing that calmed her down. We tried giving me a rest and having my husband or mom take her. She wasn’t having that. So in my exhaustion, mentally, physically, emotionally, I had a perseverance that I didn’t realize I had. That protective nature comes out, the “mama bear” so to speak, and I would do whatever it took for my child…..

After a long 4 days, they found nothing. Weird huh? A little acid reflux that they said was pretty bad, but that was it. They were still concerned about how much she projectile vomited and how often, that they prescribed her medication. After 4 different medications, some 2 and 3 at a time, and zero progress, I had enough. I told the Dr. I was done and to take her off all of the medications. Meanwhile, she had her immunizations. She was 5 months old and at one time, she had 9 different immunizations at one time (3 shots with 3 immunizations in each). 9!!! Now, with a 5 month old baby, who is already on 4 medications and then gets 9 more on top of everything, do you think that a baby’s body or brain could handle that? Would you take 13 different rounds of medications and viruses? I didn’t know any better. I just listened to what the Dr. said. Looking back now, I would do so much different. Isn’t that life though? We learn from our mistakes and life choices and move forward with the knowledge to make better choices.

This is my journey and it will take time to tell. Please be patient with me 🙂

To be continued…..