Parenting a spectrum of girls

Posts tagged ‘health’

Guilt and Progress

One thing all mothers share, special needs or not…our constant companion waiting behind every decision big or small:
Guilt.
Today was a perfect example.  I have not been feeling well all week, dealing with a virus that is giving me painful, swollen glands, sore throat, headaches, body aches and fatigue.  By the time I left work this afternoon I wasn’t sure I could even stay awake another hour.  So, I decided to take a nap.  M was home from school due to a power outage, so I had her take a nap as well.  A was supposed to take a nap, but I couldn’t drag her away from her baby dolls & didn’t have the energy to try too hard.  But it was a difficult, emotionally painful decision.  The house was a mess after a hectic Halloween, and I felt I should spend the time doing something special with the girls since M was home.  On the other hand, I knew I would be very irritable & even more tired if I chose another option.  And this is how a mother thinks and weighs every scenario in a day.  It turned out fine, after nap we picked up K, ran to the grocery store which was *mostly* a nice experience together & cleaned the house while listening to Christmas  music. (Shhh…don’t tell my husband.  He has a “no Christmas before Thanksgiving” philosophy 😉 )  But I know I will still second and third guess myself next time I try to prioritize, especially if I put myself first.

I also know I am long overdue to update you all, so here goes:

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A: nothing to report, as usual.  She is very happy in preschool.  She did have her 3 year well child, where she was a very big, brave girl and earned her chocolate milk and cheeze-its.  She is in the 87% height & weight (thus why she & M almost share clothes) & the doctor was delighted with her language & cognitive abilities, stating she is right on track for a 4 year old, actually.  (No surprise to me.)

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K:  The mono is still kicking her butt a little, but so far she has only missed half a day of school, though she has to take Ibuprofen throughout the day to dull her awful headaches.  I am praying it is over soon, and that she doesn’t catch any other virus in the meantime.  She is excelling in her gifted program at school, especially science, her passion.  She has a FLL Robotics tournament next weekend, and she is taking the SAT next month to secure a spot in an even more advanced, rigorous program for next year.

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M:  She is still progressing on the meds.  We did end up increasing her dosage a little to twice per day.  She still struggles with changes in routine, some sensory issues and other areas, but overall what a huge improvement!  Everyone who knows her on any level has commented on how different she is.  She is HAPPY.  She smiles and laughs.  She has stopped hissing and growling at other children and plays more, with other children and with her toys.  The biggest thing is, she is more verbal.  Instead of an immediate meltdown she will tell me (in a loud tense voice) “I’m feeling anxious!” So we can remedy it before it escalates. She still stims, but not as often.  She still has her obsessions, but they don’t over shadow everything.  I can listen to something other than Taylor Swift on the radio!!  🙂  She still has not given me that hugging-me-and-telling-me-I-love-you-Mommy moment, but she has given me a couple of kisses & lets me hug her somewhat more often.  Today there was unexpectedly no school, and I got that sick in the pit of my stomach feeling that comes when I know she is going to lose it.  She was fine!  Overall a bit more tense and anxious today, but not terribly.  She was happy to get to wear whatever she wanted today (they have uniforms)!  Her therapist even noted the enormous difference, and said she had never seen anything like it before.  It proved that it was not lenient parenting (she had been pushing for me to be more strict) & she noted how remarkable that one thing in her brain was so far off that this medication could transform her so.  The brain is such a mysterious thing!  She even finally won her BeyBlade…a reward we put in place over 3 months ago for a week of good behavior!

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We had a great Halloween trick or treating for the first time, with Kaity’s best friend.  There was very little anxiety from M.  She was amazing.  So was A, for being only 3!  They won’t eat much candy but it sure was a fun experience!

Modern Miracles

There are a lot of people who don’t believe in miracles.  I think that this may be because we don’t always talk about them when they happen to us.
Miracles are like tragedies in that they are very personal, and we keep them close to our hearts and do not share them.  But today I am going to share one of my biggest, most personal miracles.

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A and I on her 3rd birthday

September 2009 was an exciting month for me!  I was expecting my third child, and though it was quite a surprise I couldn’t have been more happy.  The pregnancy had gone quite well (as opposed to my pregnancy with my middle child, which was fraught with illness, anxiety and depression).  There were no concerns for my health or the baby’s and we were all ready.  K was born on her due date and M 10 days early, so when my due date came and went we were surprised but decided to patiently wait for the baby to be ready.

Finally, almost a week late, it was time to go to the hospital!  All three of my labors were medication free, but this time we had hired an amazing doula to help me have a natural-as-possible-in-a-hospital and relaxed labor and birth.  It was an amazing experience, and I would recommend a doula to anyone! 

I remember the moment each of my children were born.  With K & M there was that mixture of relief, wonder and excitement.  With A there was a split second of excitement followed by terror.

As soon as the baby was born, the doctor said “It’s a girl!”  Then I heard…
Silence.
Nothing.

I knew something was very wrong.  They tried to reassure me, but a mother knows when their child is not ok.  A was not breathing.  Even now I can’t stand to look at the pictures my husband took of her immediately after birth.  She was purple.  Very purple and not ok.  They rushed her off to a warming bed with an oxygen tent.  I was not allowed to see her for an hour, not allowed to hold her for about 9 hours.

After those 9 hours she was breathing well on her own and able to regulate her temperature, and she was the healthiest little thing, only having one real illness the first 2 years of her life.  She now suffers from asthma (which she developed after I weaned her at 2 years 3 months of age, which to me shows the power of breastfeeding), but it has not been severe.  She is an amazing little girl, intelligent, loving, fun, friendly, and caring and empathetic well beyond her years.

The doctor said the cord was wrapped around her neck, and that the placenta was starting to fail.  But that’s not the amazing part.  That she recovered so well from that rough start is amazing, but not totally unusual, maybe not a miracle.

But this is…

The doctor said there was a knot in the cord.  A true knot.  She had never even seen one before.  She didn’t know what to say.  I wasn’t really sure what that meant and for a while I was so thankful to have my precious girl, and still shaken up from having almost lost her, that I was afraid to even look it up.  From the wonderment in my doctor’s voice I knew it was something big.

This is what I found:  very little.  A true knot in the cord is rare.  It generally happens early in the pregnancy when the baby is still small enough to move around a lot to create the knot.  It is rarely found by ultrasound or any other test, because once it happens the baby is unable to get nutrition and soon dies.  Even if it does happen to be found on a test there is really nothing they can do.  There was no information on a baby being born alive with a true knot in the cord because it doesn’t happen.

Maybe there is an explanation, but this is what I know:  according to statistics, A shouldn’t have made it to full term.  She shouldn’t be alive.  But she is, and she is the sunshine of our family.  She is my easy, laid back child who always wants to make any of us feel better if we are upset or sick.  She wants to be a mommy when she grows up.  All children are a gift from God; I certainly know mine are.  A is a miracle.  And if I only ever got one miracle in my life, that’s the one I would choose. 

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A on her 3rd birthday. She loves giraffes.

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