Kate’s World Falling Apart

Every year, 5,000 children pass away.

This is her story.

My world is falling apart.

My just-turned-six year old is dying.

His brain stem is deteriorating, a side effect of the chromosome abnormality he has. Twenty-nine surgeries haven’t been enough to save him, though they have bought him more time with us.

We are told that he’s the only child in the world who has his conglomeration of medical conditions (the chromosome abnormalityspina bifida, a connective tissue disorder, chiari malformation, intracranial hypertension, and another half-dozen minor diagnoses).

The amount of pain medication he receives every day is a drug-addict’s dream, is administered around the clock to keep him from experiencing pain. It is so beyond awful that I don’t have words to express my feelingsWatching him decline is the worst thing I’ve ever experienced in my life and that is saying something.

As if that isn’t enough, the two children my family adopted from Ukraine eighteen months ago have a lot more “going on” than we were told about.

My two-and-a-half-year old has Down syndromeautism, and reactive attachment disorder. She functions at the level of a 10 month old.

My four-and-a-half year old has Down syndrome, a heart defect that wasn’t repaired properly, systemic juvenile idiopathic arthritis, atlanto-axial instability, autism, tethered cord, syringomyeliamild hearing loss, and is considered both medically complex and medically fragile. We’ve been told repeatedly by numerous specialists that she isn’t going to have a long life. She functions at the level of an eight month old.

Neither of the girls walks, talks, signs, eats (they’re g-tube dependent, just like my six year old) or interacts well with people (they interact, but only on their terms).

When we adopted the girls, we knew they had Down syndrome and that the four year old had a heart defect.

Everything else has been a big ‘ol surprise since we brought them home. Honestly, it feels like discovering new problems with our kids never ends.

We didn’t know our son had this chromosome abnormality and would die soon. If I’d known this, I wouldn’t have adopted his siblings, or at least not when I did.

To top it all off, my marriage is falling apart.  I know I should care, but I don’t have the emotional capacity to handle it. I just want him to leave me alone. I don’t want to have to deal with him on top of everything else.

I’m struggling.

I’m struggling in every sense of the word. I don’t know anyone that understand how this feels.

Yes, lots of people have lost a child to death.

Yes, lots of people have a medically-fragile child.

Yes, lots of people have large families.

Yes, lots of people have multiple children with special needs.

But I don’t know any other people who have a large family with lots of kids with special needs, some who are medically fragile, with one who is terminally ill?

If there are, would someone please point me toward those people?  I REALLY could use a friend, someone who’ll say, “This totally sucks!” along with me. I know people don’t know what to say to someone like me, but I still want them to say something – the silence is deafening.

This road I’m on is lonely.

I just want to feel like I’m not on it all by myself.

by kpmomof9; Published on May 03, 2012
Filed under: 
Special Needs Parenting,  Pediatric Terminal Illness,  Divorce,  Congenital Heart Defects,  Spina Bifida,  How To Help Someone Who Has Lost A Baby,  How to Help a Parent With a Special Needs Child,  Child Loss

 

  • Kate says…

May 3, 2012, 11:19 p.m. 26254

I need to clarify something ~ my 6 year old is NOT adopted. I obviously messed up when I was typing this post. I meant to say that I did not know my son had a terminal condition when I adopted my 2 youngest girls. If I had known about my son’s condition, I wouldn’t have adopted when I did. Thank you SO MUCH for the support, hugs & understanding. The Band is amazing… Thanks to Aunt Becky for pointing me here! ❤

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3 thoughts on “Kate’s World Falling Apart

  1. Who is “Aunt Becky”?? I thought Kate was estranged from all her extended family members. Was “Aunt Becky” a friend who was an honorary aunt?

    I’m grateful that I only posted supportive responses on CB, added the family to my church’s prayer list, and sent some toys to Joshua. I hope he actually got to play with them, and I wish I’d sent something to Bethany, though Kate consistently claimed that Bethany had no interest in toys. Still wish I’d sent something….

    I also wish I’d paid more attention to my instincts: how was it that this one family had all these kids with all these issues? Why did they keep having bio. kids when it seemed apparent there were hereditary issues? How were they ever approved to internationally adopt two children with verified special needs? How on earth could Joshua survive those increasingly lethal doses of narcotics and other powerful meds? Why were Bethany’s needs consistently shoved aside and back-burnered in favor of attending to Joshua’s apparently more urgent needs? Why did Kate brush off her followers’ earnest suggestions and recommendations of taking both children to St. Jude’s Hospital, which does not charge one penny for its services?

    There were always excuses.

    I’m thankful the children are out of this woman’s control, and pray that they never again will be subjected to what they endured. I’m also angry that Kate could cause such pain and trauma, , endanger lives, lie to and mislead so many good people who only wanted to help, and further endanger and raise doubts about international adoption. I’m sorry I didn’t see through her and blow the whistle, but am extremely grateful for those who did. Thank you for doing the right thing, whistle-blowers, and than you for this blog.

    Susan in Ky
    Cousin to 2 from EE

  2. Having more than one child with medical issues or mental issues isn’t enough to stop some people. I was friends with a woman from KS (while I lived in KS – not there now, we moved) and she is currently pregnant with baby number 12 – yep number 12 and her first born has Asperger’s and other mental issues, her second son and daughter both have asthma, her first born daughter was born without an anus due to her doctor giving her a harmful antibiotic while she was pregnant with the litter girl and the same girl has severe kidney issues and is constantly being watched for renal failure and is very small for her age – the rest for a while seemed relatively healthy but then baby number 10 was born with Hirschsprung’s disease and she keeps on having children. She won’t stop until she is no longer able to have children, I am positive of this.
    She has a mom who is quite literally one of the worst mom’s I’ve ever had the unfortunate privelege to meet, she alternates between being manic and being so depressed she wouldn’t leave her room – and often times my friend’s father and sister would get her ready for school and a lot of times there wasn’t food on the table, I could keep going on, but I think you get the point.

    I stumbled on here because I too am a part of a prayer group and Kate sought us out after finding us on the Emerson White FB page – and asked us to pray for Joshua and Bethany and shared the link to the Caring Bridge and we did pray. Our family prayed for them – suddenly everything went dark – first on Bethany’s page, then on Joshua’s and after a while I began to wonder if he was okay. Sadly, now when I read about a child in need of prayer I wonder – is this another Kate?
    I’m glad someone figured out what was going on and that as far as we know, Joshua and the other children seem to be okay. And we still pray for Kate – because obviously a woman who feels the need to do this is in need of some serious help spiritually and psychologically.
    Thank you for being bold enough to warn people about what was going on and for creating a way so those of us who were worried now know what happened and why things suddenly went dark.

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