Archives for posts with tag: special needs

This morning we had to go out.  I got Miss Lizzie ready,  but when I was done and put my arms out to ask her if she wanted to go,  she turned her head away and didn’t come to me like she usually does.  She wasn’t being difficult,  but playful. She was smiling as she was ignoring me.  Usually she tells me she wants to go by practically leaping into my arms or pulling on my arms. We didn’t have time to figure out what she was up to because we had to get her brother to band camp,  so she had to go.  Her dad scooped her up and moved her to her chair. End of discussion. 

This afternoon I had planned a trip to the mall after picking up her brother from school. Again after getting her ready she was playing with me.  Playful and coy. Sitting just a tiny bit out of easy reach, turning her head away from me with a big smile on her face.

The dogs started dancing just outside her door letting me know they needed to go out. I suddenly realized in our haste to leave the house early that morning I’d forgotten to water my garden. So I put Lizzie’s bed rail up. “I guess you can stay home with Dad.” I told her.  “See you later.” I waved as I left the room to let the dogs out.

I went out with the dogs and watered my garden. I was probably gone all of five minutes. I opened the door to hear someone yelling loudly from her room.  “All done.  All done. All done.” Over and over. Someone was done playing games and wanted me to know she still wanted to go out.

I went back in her room and she stood up by her railing. Someone was really ready to go. With minimal coaching she moved to the end of her bed so I could put her railing down and helped me transfer her to her chair. I love when we get these moments of clear communication and I love that she used her words to tell me she was ready to go. 

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I am thinking about my mom today.  When I was almost 2, my knee became locked in a bent position.  I saw a lot of doctors before a diagnosis of Juvenile Rheumatoid Arthritis was made.  This was back in 1976, and I don’t think a lot of people even thought kids could get RA back then.  It took a university hospital to make the diagnosis.  They told my mother that I’d never walk again.  They offered her a surgery to clean out the scar tissue in my knee and told her it might help, but it couldn’t hurt.  My mom said that form for my surgery was the one of the hardest things she ever had to sign.  They ended up taking me to surgery earlier than expected and my mom wasn’t there when they wheeled me down.  When I woke up after surgery, she told me I looked at her and said, “My puppy cry (my stuffed dog), my kitty cry (my stuffed cat), and I cry.”  She said that she did, too.  As hard as that time was for us, I am eternally grateful that she made that decision for me.  She also told me that they told her I would never walk again after that first diagnosis.  Lucky for me, she didn’t believe them.  I may have cursed her for making me do those painful physical therapy exercises at home, and take those yucky medications.  I know I didn’t make it easy on her; crying and pleading every time I had to have blood work done and complaining every time she made me do my exercises.  And I may have even hated her at times because of the pain, or because she deemed some activity I wanted to do unsafe for my condition, but I am so happy now that she did what she did.  Without my mom fighting for me, cheering me on, and making me laugh when it hurt the most, I wouldn’t be able to do half of what I can now.  My own daughter has special needs and everyone tells me what a good mother I am to her and how she can do so much because of me.  I always feel odd when people compliment me.  I just do what needs to be done and believe in my kids.  That’s how you do it, right?  I’m only the mother I am because I had a wonderful example.  My mom fought for me and didn’t even know she was teaching me how to fight for her grandchildren.  I am so very grateful to have her as my mom.  I am very lucky.

Our journey started more than seven years ago, when I was still pregnant with Lizzie.  There is nothing like going for a “higher level” ultrasound to look for a possible heart problem in your unborn child, and being told by the technician that your daughter’s heart looks fine.  I was soaring.  I thought, “I have a daughter, and she’s going to be okay.”  Then minutes later, the doctor comes in with a very serious face and says, “We have a problem.”  He explains that the problem was not with her heart, but in her brain.  So much for soaring; I felt like I had hit a brick wall.  They didn’t tell me what was wrong yet, because I was alone.  I went into the building’s foyer, and waited for my husband to arrive.

That day they told us about hydrocephalus.  A condition that meant our daughter’s brain was full of too much cerebrospinal fluid, which was putting pressure on her brain.  They told us that we had to watch the progression, that it might resolve itself before she was born, and that there was no way to know what hydrocephalus would mean to our daughter or to us.  It was all a big wait and see.

The rest of my pregnancy, we watched the fluid build-up.  Every month we talked to a different neonatologist in the practice, and every month it looked worse to me.  Worse meaning: more black area of fluid and less whitish-gray brain area.  I mentioned this to one doctor who basically told me, “Well, I do know more than you, because I have a degree, but yes it’s getting worse.”  Okay, tell me I’m stupid; then tell me I’m right.  They never discussed ventricle sizes with us, and I didn’t know enough to ask.  No one would tell us what any of it meant.

When we got closer to the due date, they suggested we meet a neurosurgeon.  Our first meeting did not go well.  He spent the entire visit explaining the horrors of spina bifida to me.  After I sat there numbly taking it all in, I managed to mumble something like, “But they told me she only had hydrocephalus.”  The panicked surgeon consulted his nurse, and then apologetically explained he was having an emergency surgery scheduled and things were not going well, and I realized he was having a bad day.  He then explained hydrocephalus to me and what our options would be.  We were told that sometime shortly after birth a plastic shunt (VP) would be inserted into her brain that would carry the surplus fluid to her abdominal cavity where her body could reabsorb it, and that most likely this would be permanent.

Near the end of my pregnancy, a C-section was scheduled, because it was determined that her head would be too large to pass naturally.  However, even in the womb, my daughter had a mind of her own.  Four days before we were scheduled I found myself in the hospital, in pain, and waiting for someone to deliver my baby.  Emergency deliveries kept bumping us.  I thought, “What’s more emergent than a difficult delivery of a medically challenged baby who needs to deliver C-section but is trying to come naturally?”  Hours later, we finally delivered, and my daughter was whisked away to the NICU (neonatal intensive care unit) before I even got to see her.

When I met my daughter, six hours later, the NICU nurse informed me, “You have a very opinionated young lady on your hands.”  These words and the other we heard before she left the hospital twenty days later, “stubborn,” would shape our journey.