[tri-med] Re: laryngomalcia/Apnea--WARNING: Religious content

 
Thank you Therese 

Yes, that helps a lot. I am ashamed of my feelings, and will forgive myself
(as I know God will) that I was so utterly tired nothing made sense. Thank
you for sharing your personal insights. I know that it is in our most
difficult times when we grow in faith and feel God's presence. 

Barb




From: Therese <therese@xxxxxxxxxxxxxxxxxxxxxxx>
Reply-To: tri-med@xxxxxxxxxxxxx
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: laryngomalcia/Apnea--WARNING: Religious content
Date: Sun, 26 Jun 2005 10:31:09 -0700

Dear Barb,
Just returned back from Yosemite, CA...What a wonderful, awesome
place created by a God who loves us.  A must see vacation at one
point in your life...Always beautiful, but I feel it is best after a
rainy season and in the spring and early summer months...

Reading through the posts this one caught my eye, as I've had some
friends and family over the years make this same comment,

>"Why do we let our children
suffer?"


I'm not sure if this will help you, but personally, the way I get
through and have dealt with the more difficult times is "offering up
the child's suffering to God"  It's called Redemptive suffering....If
you pull up your search engine to "Redemptive Suffering" you'll get
all kinds of links to articles on the subject.

I truly believe, Natalia has kept my husband and I together, helped
to play a roll in his conversion from Jewish to Catholic and her
suffering and presence in our life helped bring more prayer in our
family which has helped in many areas as well as healing of cancer
with my husband two years ago.

When I have those days, that are filled with chaos, unexpected events
and trials that get me down, or those moments when I am just not sure
what is troubling Natalia, I often, take a big breath, and give it
all back to God, and ask him to use my sufferings, and hers to give
graces to those who most need it...

Once I let go and realize this suffering may be benefiting someone
else, it all seems to get better....and in time, is...

The first year does seem to be the roughest as we tackle all the
changes and necessary procedures to help correct what we can....it
does get easier...God Bless You all.
---------------------------------

Oh---and the funniest thing happened...On a post I sent off before we
left, I remember writing FAITH HOPE and LOVE in the signature
line...thinking at the moment, that was what was needed for this new
trisomy parent...taking a double take as it was a bit religious...but
hit "send" and said what the heck!

Anyhow, the next day upon arriving at my sisters, she gave me a wrist band,
that said:  FAITH HOPE and LOVE--it just struck me, WOW, maybe I was
to keep you all in my thoughts...so I wore it the entire trip and
thought of you all often and sent many prayers your way...I hope you
all felt them... :)

Take care, I'm going to try and back off from the list a bit as I
have lots of projects I want to tackle this summer...You can always
reach me off list if you need too...

Blessings.

ThereseAnn mom to Natalia and three other great kids...Having fun in the
Sun.
http://www.livingwithtrisomy13.org/album14.htm

>Dear Barb,
>
>I remember those dim, dark days after Keren was first born and things
>were so uncertain.  Things are still uncertain, of course, but we've
>adjusted to life and God has shown us his faithfulness so many times I
>can't even count.
>
>I remember working through the issue of "Why do we let our children
>suffer?"  I knew on the one hand without doubt that God was in control
>and knew what he was doing.  But I had to figure out some reasoning for
>myself as well.  I won't go into great detail here--I can email you
>off-list sometime with some of my rambling thoughts if you'd like.  In
>essence, though, I guess one of the things I realized was that
>sometimes we let our kids suffer in order that they can get better and
>NOT suffer as much.  For instance, Keren had such a hard time with
>reflux and breathing and eating, so when she was five months old she
>had surgery.  This first was a jaw distraction--the doctors cut her jaw
>and slowly moved it out, giving her more room for her tongue and to
>breathe.  It was a tough thing to watch, and I know Keren was in pain
>during the recovery, but what a difference it made after the fact!
>Suddenly she could breathe!  A few months later we had a g-tube
>inserted and she had a fundoplication done to help stop her reflux.
>Painful surgery, yes, but as a result she could get the nutrients she
>needed and start to thrive.
>
>I don't know if that's any encouragement.... I hope it is....  I know
>it probably sounds trite to say, "Everyone will suffer--it's just what
>happens," even though that is true.  It's just so much harder when we
>as parents are making a decision for our kids that may cause them
>suffering....
>
>A Bible passage that took me through some difficult times before Keren
>was born and still now was Romans 8 (all of it!)--It reiterated to me
>how God is sovereign and looking out for our best.  Also that sometimes
>we don't know how to pray, and that's okay!  God hears our hearts and
>understands!  My life-verse is Philippians 4: 6&7, "Do not be anxious
>about anything, but in everything, by prayer and petition, with
>thanksgiving, present your requests to God.  And the peace of God which
>transcends all understanding will guard your heart and your mind in
>Christ Jesus."
>
>I'm praying for you and yours!!!
>
>Loren (wife to Kraig, mom to Keren, T18, two years old (9/27/02), and
>new little one due 7/13/05)
>Southeast Michigan
>http://webpages.eng.wayne.edu/~ad6075
>
>On Wednesday, June 22, 2005, at 11:04 AM, Barbara Farlow wrote:
>
>>   I must admit, that
>>  I am a little annoyed with the Almighty right now. It almost seems that
>>  abortion would have been the answer, and yet that is so evil, and I am
>>  so
>>  against it. Why should it seem that those who choose it, and their
>>  babies
>>  suffer less?  I know that suffering isn't necessarily bad, but surely
>>  not
>>  fora small baby. Poor Annie, her little feet are poked so often (for
>>  sugar
>>  test) they look like pin cushions, and sometimes won't give up even a
>>  drop
>>  ofblood.
>>
>>  My daughter has reminded me how much we just wanted to see her alive,
>>  and
>>  maybe get a pic of all of us together, and we should be so grateful for
>>  that.Sometimes when you are very tired, as I am sure you know, things
>>  don't
>>  look very clear anymore. I guess I need to pray more. This is the time
>>  when
>>  we feel God's presence the most right? I really don't even know what
>>  to pray
>>  for. Life with no suffering is too much to ask.
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line

                   Building ___ooOOoo__ Rainbows
                        www.trisomyonline.org
                   Families Helping Families On-line


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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