Reaching Out

[Cindy]

I don't quite know where to start so I will just start with
what is on my heart right now.



Yesterday I took my three children in to the orthodontist.
They are 11, 10, 8. The 11 year old has a Unilateral cleft lip
and partial palate, the 10 year old has a Severe Bilateral Cleft
Lip and Palate with a jaw 1/3 the size it should be. The 8 year
old has a unilateral cleft lip and partial palate but the least
severe of the three.



We have just gone through the process of jaw expansion and
teeth extractions with the 10 year old, I won't go into detail
right now but because of Insurace, HMO's, communication between
doctors it's been a struggle and nightmare. It's taken so much
time that I was forced to elminate one of my part time jobs. I
can't hold down a normal job because of all the appointments. She
has the pain of those extractions along with some other
procedures fresh in her mind when we go to the ortho yesterday.



The orthodontists office seated a young boy the age of 10
right by us as my daughter was getting fitted for an appliance.
He had a cleft similar to hers. The father then began explaining
all that his son just went through, which is what my daughter is
getting ready for. The son started talking about the pain
involved with the bone graft and what he enjoyed or didn't enjoy
about his surgeries. I'm thankful he could share but by last
night I had three very emotional, disturbed, upset children on my
hands regarding their upcoming surgeries. My daughter started
crying and saying "Why do I even have to have the
surgeries"? "Why can't I just stay like this?"
"Why can't I just stay like God made me." The other two
chimed in right away and we had an emotional rollercoaster right
in our living room. I sat there stunned without an answer. I'm a
Christian and have stood strong in my faith and in the power of
the Lord but I stood there without an answer for them.



My 20 year old son was standing there as well when they were
asking, he was at a loss for words and you could see the pain on
his face. He about started crying too. I have 5 children and the
last three have the clefts. Someone wrote in a post earlier how
it affects the other members of the family? Well it's kept ours
close. My 20 year old and 18 year old still live with us and I
believe part of the reason is that they want to be a support to
their younger brothers and sisters. Is it a test of our faith?
Certainly not at this point because I don't know how I would have
gotten through any of this without the Lord.



As a mother I'm heartbroken right now because I'm powerless
to help them or take the pain away. I find each trip to the
dentist, orthodontist, jaw surgeon, plastic surgeon, speech
therapist...wherever to be especially wearing, tiring and I think
it's because it just is so emotional. I want to remain strong but
I can only take so much before I have to let it out. I remember
just having one child with the cleft and people staring at us
when we go to the store or something but having three you become
a neon sign. Sometimes I would like to just go out and feel
"normal"! I'm just venting right now because it's
fresh. I get over it, go on to the new day and deal with what I
need to do but I can't deny that I have these feelings in some
respect everyday. Does it consume me? No I don't let it.



I don't know if I can offer help and support at this point,
all I can do is share my experiences. I guess I quit asking all
the why's a long time ago and now just ask the hows. Today I felt
I helped my children over a threshold in their growth. See I used
to carry them emotionally, in prayer, because they were so young
and couldn't do any of it themselves but today I saw myself
walking over the threshold holding their hands because now they
are at the point where they too have to carry some of the
emotions and prayer and believe in God themselves for miracles
and help. Just one more step in their growth. Thank God they
don't have to be alone. The one nice thing is that there are
three and they support each other. They know how it feels when
someone makes fun of them...They know how it feels when they have
a procedure done. They can relate to each other in a way no one
else in the family or friends can. I'm thankful they are not
alone in it. I used to whine that I had three children with
clefts but now I don't as much because they do help strengthen
each other and how odd it would have been for one to not have
that support.



I've rambled and I apologize. It's late and I've just been in
a tremendous thinking mode Not a pity party, just reflections.




God Bless



Cindy 4acres@gte.net

[liz_sabatino@hotmail.com]

Hi Cindy, I just had to write to you, because my son was born
with a bilateral cleft/lip and palate. He is now three years old,
and the first three years were tough! I was on Medicaid and BCMH
and believe me, trying to get the doctors to listen to me or
explain things to me was a constant battle. I had to explain
myself at least a dozen times to at least one hundred different
doctors and they were all telling me differently what I had to do
to give him the proper treatment!! Then there were the government
agencies who they themselves didn't seem to know what was going
on...I had two different agencies telling me two different things
on how I could get coverage.



I am also a strong Christian and it took a lot of prayer to
get through these first three years. I use to wonder why Alex
turned out the way he did. (there is no one in my family who has
either cleft lip/palate) I truly believe though that God gives
special children to special parents--ones that will give the most
love and care to that child. I have been blessed that God has
found me worthy to take care of His precious child and I'm trying
to be a good steward of this gift. I'm sorry your children are
having difficulties with the thought of their upcoming surguries;
I will keep them and you in our thoughts and prayers.



In His Love,



Liz

[jennifer]

liz, your reply to this original post was exceptional. I also
believe that God gives special children to special parents &
the way you summed this up was wonderful! Your reply is enough to
make any parent feel better at a time of stress when dealing with
a medical problem! Thanks for the wonderful words! Jennifer

[Cindy H.]

Hi Cindy.



I felt compelled to reply to you. I think that I know you via
another group I was involved with once. I am also a mom of 3 kids
with cleft involvement, although I have 4 kids total. My kids
with clefting issues are 15 months, 9, and 7. I believe I
contacted you when I was pregnant with my youngest. I have
changed e mail addresses, so if you want to contact me you can at
CinLou1970@aol.com



If you need anything just let me know. I know all about the
financial issues. I know that for some people it is difficult to
ask for help, but have you applied for any special services for
your children? You should qualify based on the fact that you have
three with some needs. There is even Shriners. If you are the
Cindy that I think you are please write to me. I am going to be
coming out your way next summer and would love to meet you.
Please keep in touch. We need each other, I think. It helps to
have others who really know what we are going through- and I
do!!!



Big hugs to you and your kids!!



Cindy H.