The first few days after I found out about Hailey's diagnosis of
WS, I was on the
Internet constantly, trying to figure out more about the syndrome. I don't think that I was ready for that at the time and it made me very unstable. I would just sit, read and cry. My husband then banned me (rightly so) until we had processed this and spoken with the doctor.
That was in October and I have not googled it once since then...until yesterday. I do think that I needed that time to process everything and have an emotional break. I don't think that I have been in denial, just not at a point ready to move forward and possibly find other people going through what I have. Maybe a little scared at what I might find. It scared me a to come across another family that had a child with the syndrome. What if they were a more severe case....or a less severe case?
So I searched yesterday. What I found was very encouraging. I found a couple of groups on
Facebook. There is a page with a message board and you can see the different problems families are having and then ideas and suggestions from people that have been there.
One of the major things that we have had to deal with is SLEEP...or lack there of! I have put Hailey to bed at 8:00 every night. I don't understand why she can't get the picture that this is a normal part of our daily routine. Some nights are great and other nights not so much! I ca
n almost count on my fingers and toes how many times she has completely slept through the night. Sometimes getting up 5+ times! Most nights at 4am she would come stand in my doorway call my name and I would place her back in her bed and that was that. Sometimes however, it was an incredible fight! "Lay with me mom!"..."Mom don't go! Please!" and she would cry and cry. I was used to it, but
recently found the end of my rope and bought a gate to put on her door so that she can't get out of her room. I hear her sweet voice at 3am "mom...mommy" I've been ignoring it and she eventually goes back to sleep...often through tears.
I always thought that this was my fault. That I did something wrong when she was an infant. That I wasn't strict enough with her...! Why couldn't I get her to sleep through the night?
After I found a discussion board on this exact issue...my eyes filled with tears...she wasn't the only one! It seems as though many others with the syndrome deal with this same issue. They say that these kids have anxiety and sometimes it was easy to put their kids to bed and other times it was a nightmare. Sometimes they would wake crying in the middle of the night for no
apparent reason and
couldn't get them to calm down. That was exactly what I have been dealing with for almost 4 years now!...There were also discussions on difficulties in discipline and potty training. That's a whole new post in and of itself!
I know that this isn't going to give us all the
answeres, but it definitely helps me to know that she is not the only one that deals with this and that it is not my fault...There are absolutely ways that I can improve as a mother. I think that educating myself more on her syndrome can help me to be the best that I can!
Her
geneticist apt got bumped up 5 whole weeks...so it is next
Friday the 13
Th...creepy huh! :) I am writing down a list of all my questions and sleep was definitely one of them! I'll keep you all posted after that...I have no idea what to expect or what new they will be able to tell me, but am excited to be done with this final step in the diagnosis.
I also attended a Special Ed class last night for Cherry Creek Schools. They gave me this and I thought it was cute!
Top 10 Reasons to Give Thanks for Your Child with Special Needs:1. You never have to worry about worrying over nothing.Let other parents obsess over the frivolous and shallow. Your child will make sure you always have something worthy to worry about.
2. Developmental delays=more years of hugs, kisses, and little-kid sweetness.My 13 year-old still wants to sit on my lap, give me hugs and tells me he loves me. What mom of sullen teen doesn't secretly wish for the same?
3. Maybe someday, Ty Pennington will come build you a house.Hey Extremem Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.
4. Any little milestone is a cause to throw a partyYour child works hard for every step, sit-up, and syllable, giving you lots to be excited about.
5. Every day is a learning experience.Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure!
6. You have the privilege of putting several doctors' children through college.After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.
7. You meet a better class of parent in waiting rooms and support groups.Your child gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.
8. You have and iron-clad excape excuse for any occasion.You'd love to stay at that boring party, crowded event, endless church service,but you know your child
just couldn't tolerate it. (And if sometimes it's
you who can't tolerate it--who's to know?)
9. Coming up with new strategies every day keeps your brain sharp.They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection
.10. Your blessings will always be fully counted.Other parents may take the gifts their children bring for granted. Not you. Not ever.
Just thought I'd give a shout out to Rare Disease Day 2009. This is a day to recognise and raise support for rare diseases. 
...Turned around to put them in the oven. 
Her Valentines
What's a holiday without a special outfit...don't worry Ashtyn will wear it someday too! (that how I justify everything to my froogle husband!)
Hailey managed the concept of giving the Valentines to her friends and collecting them ...she did however, struggle with the concept of waiting until we arrived home to enjoy her candy!
