Some days are more painful than others…

I am trying to start at the beginning so to speak but after last night and today I guess am going to sidetrack a bit.  After we got the first 2 kiddos D and R we had a few foster placements but then brought home doodle bug.  He was a premie who when we got him at 3 months weighed 5 pounds and 1 ounce.  He was so tiny.  He came to us with the only information we knew was that he had “a few apnea episodes”.  Umm well if 12-20 a day was a few yes he did.  He also needed oxygen and a heart monitor due to his health issues.  He spent the next 9 months in and out of the hospital either on the peds floor or in PICU.  We never knew how long before he would be back in struggling to breath or with seizures.  He had aspiration pneumonia so many times I lost count.  Finally at 11 months the docs decided to put an NG down and stop all feeds by mouth.  This helped a bit with the aspiration and then at a year he had his permanent G-tube inserted and this helped a lot as he also had a Nissen fundoplycation done to stop the reflux and aspiration piece of it.

As he has gotten older in many ways his health is better and yet in some it is still such a struggle.  He has not had any hospitalizations in the past couple years but his seizures have continually changed and gotten worse.  He now has 3 distinct types of seizure and takes 3 different meds for them.  He takes meds for his spasticity (CP), breathing and asthma, and seizures.  He has a total of 10 different meds and 2 kind of nebs a day.  He still has his G-tube feeds but  he has been able to learn to eat and drink in the past 3 years.  He walks and runs now.  He is always happy until he isn’t:-D  He is such a blessing to us and to all who know him.  He may never go to college and may not be successful in the ways we often judge success but to us he already is a success.  We were told over and over that he would never live to be a year old (which is one of the reasons they waited to do his surgery until he was over a year).  Every birthday I get to remember that he has already outlived everyone’s expectations.

I wonder how many people get the joy of having a doodle bug in their lives.  He is ever forgiving as he has almost no short term memory and very little gets transferred to long term for him.  So he really does forgive and forget.  He enjoys every moment.  He loves dinosaurs and is blessed to see them everywhere he looks for them.  He loves to hug everyone whether they think they want one or not and somehow I think after one of his hugs they realize that they really did want one.  He is sure that everyone is his friend and consequently most people are.  Some days I wish I lived in the same world that doodle bug is blessed to live in.

But some days are more painful than others.  The days like today where he has struggled with multiple seizures or the days where I wonder if his little body will truly be able to handle it all for a whole lifetime or if it will some day be cut short.  Then I remember that no matter what I got to know a doodle bug and I got to love him.  I got to  have  him love me with absolutely no strings attached.  And really that is all that matters.

My message continues to be Don’t drink if you could become pregnant.  Doodle bugs struggles all go back to the fact that his birth mother drank and did drugs while she was pregnant.  Each of her children progressively had more issues.  She herself is the product of a mother who drank and so her ability to choose the right path was taken from her before she was born.  I cannot hate or blame her for I know she did not choose to harm her children.  She did the very best she could.


About fasmom

The adoptive mom to 12 wonderful children who are affected by Fetal Alcohol Spectrum Disorder and other issues including Reactive Attachment Disorder, bipolar, schizophrenia, CP, epilepsy and oh the list goes on...The thing is these children have taught me things about myself I never knew and would not have missed out on learning. Married to an amazing man and enjoying life on a sheep ranch.
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