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Saturday, November 24, 2012

Down Syndrome

Raising special needs kids is a whirlwind, a roller coaster, a journey.  I am learning more and more that it is an adventure that will most likely never have an ending point.  I will never come to a time where I say "this is it!  I have figured it out!"  This past week was no exception to that thought.  It was a ROLLER COASTER!  I am always "attempting" to find some sort of balance, peace, fairness,...unfortunately in a world that is not fair, or peaceful and at times very unbalanced. 

It was a typical Wednesday before Thanksgiving...last minute meal prep, a trip to Fred Meyer, a 2 year old that wanted nothing more than to be held.  A 7 year old that marches to the beat of her own drum, and a 9 year old that we attempt to keep on some sort of schedule during "non" school days. 

That afternoon I went out to the mailbox and was greeted by a letter from the Division of Developmental Disabilities.  As part of Bella's IFSP, they had me sign paperwork to apply for DDD services because she has a documented developmental delay.  I was shocked that the letter said that she was eligible because her delays are not that severe.  I read further into the letter and it said that she qualified based on the fact that she had Down Syndrome.  That is was documented by a physician.  It further stated that her syndrome was so severe that she couldn't participate in an evaluation and that she qualified for "Intensive Medical Home Care."  Basically nursing services.  Two thoughts ran through my head.  1) Some sweet baby with Down Syndrome got their paperwork mixed up with hers or 2) that the Infant Toddler Early Intervention is scamming a way to get more money.  I hope the first is correct.  Of course, on Wednesday before the holiday there was nothing I could do.  Even though I know that it is not see her name at the top of this paperwork was really difficult for me.  I wanted nothing more than for it to reflect the truth.  I know in time it will all get sorted out, but in the meantime it was something that I just had to "let go". 

The next event that occurred was more personal for myself.  It reflects the challenges and struggles of being a mother of special needs children.  If you haven't read my honest thoughts on what it feels like to be a special needs mom read it here 5 Things About Being a Special Needs Mom

Church has been a difficult subject for me since my father passed away.  My entire life he was a pastor.  The Rev. Neal L. Nyhoff.  I imagined my entire life in his church.  My kids growing up, myself growing up.  But it was a dream that would never come to be.  Since 2005, we have been at Mountain View Christian Center.  It has been a good place to be.  My kids enjoy it and we have found a home.  I know though that it will never be what it once was in my dad's church. 

For two and half years, I have been with Bella at church.  She has been the only baby in nursery.  Her and I have spent almost every Sunday since she was born together in church.  One because the church is small, and two because of her social delays and intense fear of being left by me.  It has been a good time together, but especially lately, it would be nice to drop her off in the preschool class and be a grown up for an hour.  I have been sensitive to her needs though, and have not pushed her too far.  This has meant that aside from me teaching her class one time a month, I do not have a ministry in the church.  This is difficult for me because in the past I have been very involved. 

I had talked with Mark about seeing how he felt about me being involved with the music ministry at our church once a month.  I was really excited about the possibility of ministering through music and getting a break from nursery duty. I didn't even care in what avenue I was used...piano, additional singer, special didn't matter.  I stepped out and put myself out there...only to be disappointed.  They didn't need any help currently.  

Things are planned and I understand that.  I can only imagine that I don't look very committed to anyone at church.  They rarely see me.  But I am there.  I am sitting on the floor in nursery or preschool playing ball, or dolls with a 2 year old that has social and sensory delays.  Or I am sitting in the van with one of my older children that refused to wear their shoes, or had a melt down previous to coming to church. 

I know that I am not punctual for church most of the time.  We often blow through the door 5 minutes after church begins.  And I can see how anyone can think "hey...if they can't make it to church on time...I can't count on them for ____________(insert anything here.)  What they don't see is the intense choreographed dance of getting my kiddos dressed, eating, hair combed and out the door.  Any of those 3 things can send them into a sensory break down. 

So...yes...I can see how I look...uncommitted, and unable to count on me.  I have to admit and be honest that I was disappointed not to be able to minister through music at our church currently.  As a mom of special needs kids...I could really use an outlet like that.  Something that doesn't involve kids at all...for an hour once a month. 

My wish is that people would see my unwavering commitment to my children.  They would watch me as I balance 5 therapies in a week, never missing a beat.  Cry with their therapists, strive for the next intervention, never giving up...never wavering.  They would view my stability as I manage a home, therapies, medical appointments, a family.  As I after day after day.  Looking inside our home to see that the very existence of our house is a place that meets the diverse needs of our children.  That our living room is now a therapy space.  That the blankets on my son's bed are special ordered to meet his needs.  My commit is unmovable.  My faith unshakable to the point that I raised 2000 dollars for a therapy intervention for my children.  To know that whatever happens... my children are my heart, my life.  They would watch as I never miss a medical appointment, advocate for financial help so that I don't have to work full time, and pray over my kids constantly. may not see me in the sanctuary at church, or singing or playing the piano with the music team, but I am there.  I am committed and I am ministering to the 3 little people God has given me. 

After the initial disappointment, Mark and I ministry is not confined to 1 hour a month, but my ministry is 24 hours a day, 7 days a week. It is the ministry I took on, when I said "yes" to a 13 month old Luke, and a 13 month old Grace, and when I heard Bella cry for the first time.  I was thinking this weekend as I have been processing this news.  I was reminded of something my youth pastor, Luke Gillock taught me so many years ago.  He shared a quote that has stuck with me and comes to mind in times like these....

"It is not the critic who counts: not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.  The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly; who errs and comes short again and again; because there is not effort without error and shortcomings; but who does actually strive to do the deed; who knows the great enthusiasms, the great devotion, who spends himself in a worthy cause, who at the best knows in the end the triumph of high achievement and who at the worst, if he fails, at least he fails while daring greatly.  So that his place shall never be with those cold and timid souls who know neither victory or defeat." ~Theodore Roosevelt

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