Melissa DeVries

Thanks for all the quick replies and great advice!  Bev, I actually just purchased your book and paged through it this morning :)  Do you think it is more geared to mothers?  (we have a few men in this group as well)  I have also checked out all the websites.  There sure is a lot if information out there!  My family is doing well.  It still is a bit of an adjustment with work but it's getting easier.  I would love to chat more but I hear Savanah waking up from her nap and she does not sound too happy :)  Have a wonderful day today.  Melissa

Dear Anje,

I have not been able to respond to any of your posts since you have joined this forum, yet I read each one and hung onto every word.  You might have read some of my earlier posts when I spoke about my daughter, Savanah Grace.

First I want to say I am so sorry for you and your family.  Words cannot express my sorrow.  It is ironic that the first time I am able to reach out to you and be able to speak about our daughters together is during a time of loss.  You see, my daughter, Savanah, also passed away last week, on Feb. 24/12 at the small age of 17 months old.

Thank you for your faith, your words of strength and hope.  I only hope that the Lord will bless your family with his peace.  My arms feel empty and my life appears bleak right now, yet I know within my heart that I am under the Lord's wings, sheltered and quiet.

My love to you.

Melissa

Hello again,

First I want to thank you Anje, for your encouraging words that you posted recently.  I am frequently amazed at the strength of your faith.  Your posts uplift me.  I thank the Lord for people like you in my life.  I also want to pass along my thoughts and prayers to you and your famliy as you approach the one year anniversary of when sweet Ingrid passed away this coming Friday.  May the Lord surround you with peace.

This past week was incredibly emotional for my husband and I.  As each day went by I could recall, sometimes with amazing clarity, what was occuring one year ago and how I was feeling.  On the 24th I woke up with a feeling of breathlessness and loss so strong....I found myself straining to hear Savanah sleeping in the next room...this is something that I haven't done in a long time.  We went to the gravesite with some flowers and we spent some time looking at our many many pictures of her.  We felt love and support from close family and friends but like it was a year ago, it couldn't take away our pain.  I recently read an article in which we are not supposed to ask God "why" these things happen but rather "how does it work together for our good".  I've been trying to do this.  I am comforted that Savanah is whole and seizure free, but it would be so nice to have a peek once in a while just to see how she's doing.  So the comment that you included about seeing dimly now but clearly in time is such a great reminder to me to be patient and comforted.  I miss her so much, words cannot adequately describe.....

May God continue to bless all the parents here on this forum with a special measure of His grace.  May He bless all of his children, here on earth and those in heaven waiting for us.

The following is the memoriam that we put in our local paper this past week:

We thought of you with love today but that is nothing new.  We thought about you yesterday and days before that too.  We think of you in silence, we often speak your name.  Now all we have is memories and your picture in a frame.  Your memory is our keepsake, from which we'll never part.  God has you in His keeping, we have you in our hearts.

Good morning!

This is a really interesting question.  We got pregnant through IVF.  That was a difficult journey in itself that came through many nights of tears and prayers asking for guidance and direction through the maze of medical technology.  Once Savanah was born and we were presented with her diagnosis, the geneticist was quick to say that this was not because of IVF and that there is no literature to prove that fertility treatments could cause her specific genetic abnormality.  This just happened by "chance".  However I have had a couple of people that have asked or suggested that Savanah is the way she is because we tried to "take control" by using IVF.  (They didn't believe that IVF was the right way to go in the first place).  I don't agree with them, but it's always a niggling doubt in the back recesses of my brain, did we try to take over God's control?  Is this His "punishment"?

I don't question God's soverignty and I don't believe that Savanah is a "chance" occurence.  Rather, she has a purpose in this life and wholey belongs to God.  One of the biggest lessons that we've learned is that life has more grey areas rather than black and white, yet others are quick to make judgements.  We have to sift through other's advice!

melissa

Hello!  I also am very happy to be a part of this group, especially because we can be free with our faith.  Some of you are already aware of Ryan (my husband) and my daughter, Savanah Grace.  But for any newcomers.....Savanah is now 11 months old and was diagnosed with an interstitial deletion on chromosome 2 and West's syndrome.  Her diagnosis is very rare and at first the geneticist told us that we should expect mental and physcomotor delays, sleep and behavior problems and ataxia, however they weren't sure to what degree.  She did eventually learn to smile and coo and occasionally we were able to see some improvement in her neck strength.  Over time she developed infantile spasms and completely regressed.  We have been in and out of the hospitals because we were unable to get her seizures under control.  Her neurologist has now told us that she is severely disabled and was not even sure that she would regain the skills of smiling and cooing back.  This has been such a journey for our family to say the least.  Her seizures peaked at 10 months when she could have them occur up to 10 times a day, lasting from 5 minutes long to almost 4 hours long.  It was heartbreaking to see and we felt so helpless in being able to help her.  However, I am happy to report that she has been seizure free for over 2 weeks now!  Praise God!  She is starting to eat better and occasionally smiles at us :)  The doctors aren't very positive about any further development of any kind.  So we are trying to find our way, a "new normal" and possibly make sense of what is going on.  We have started physiotherapy and occupational therapy and are in the process of obtaining new equipment at home to better help support her body as she is growing out of all the newborn things I have at home.   I have started searching for support groups online because we live in a very rural community which has nothing available out here.  There is a lady in my church who is our parish nurse that is thinking of starting a support group for parents with disabled children and we hope to meet for the first time this fall.  If any of you have any advice and expereince with this please let me know and I can pass it along.  I have been recommended a couple of books to read as well and have now ordered them.  Please let me know if any of you have a special website, book, music, poem etc...that has been helpful for you.  There is so much info online that I'm having a hard time knowing where to start.  This forum has really been an answer to one of my many prayers :)  God bless you all.  I really like to connect with you and hopefully not feel so alone in this whole journey.  Melissa

Hello,

We returned from Revelstoke, B.C. this week where we had a family reunion.  It was a great time to reunite with a lot of family that I haven't seen since my wedding over 9 years ago.  Many of my cousins also had babies this past year, including one of my cousins having a baby girl on the same day that I gave birth to Savanah.  It was bittersweet to see what we are actually missing with Savanah and yet encouraging to see all the love that was showered down on us.  I could tell that a lot of my extended family had a difficult time in knowing what to say to us or how to respond to Savanah.  I really tried to stay open and positive about everything, so not to make anyone feel uncomfortable.  How should I respond in situations like this?  Sometimes I have a hard time knowing when to speak about the day to day struggles and when to focus more on the others around me and make them feel more comfortable.....On another note, I start back at work this week and I would like to ask for your prayers with this new direction in our family life.  The plan is for me to work 4 evening shifts (3-11pm) every 2 weeks.  Most of the time my husband will be able to look after Savanah at home, but there are a few hours here and there that I will need to find a babysitter.  I pray that we will find someone with a loving and caring heart that has oodles of patience :)  I also pray that I will have the energy to still do a proper job at work and also maintain what needs to be done at home. 

Here's to a week filled with God's grace,

Melissa

Hello everyone!  I find it encouraging to hear that my husband and I aren't the only ones going through these special challenges.  We have a beautiful 11 month old daughter that was diagnosed with a very rare chromosome disorder at 2 weeks of age.  We were told to expect physcomotor delays, mental delays, sleep and behavior problems.  At around 5 months she was also diagnosed with West's syndrome.  With the appearance of her seizures she lost her learned skills of smiling and cooing.  Currently she is still at a 1 month old level development wise and the doctors have not been very hopeful that she will develop any further or even gain back the skills of smling and cooing because of how poorly she has responded to her medication.  We have been told to expect severe delays and handicapps, both mental and physical at this time. We live in a a very rural community and have very little access to any type of support groups.  I would love to be able to hear other family's stories, advice, challenges and triumphs of raising a child who has special needs.  Because our daughter is so young my husband and I have been taking turns going to church and staying home with her.  When she is having a really calm morning we have tried to take her into the service but I'm always worried if she might disrupt other's worship.