Special Friends and Special Celebrations

Early March, I made a very special trip down south to Ocala, FL with Rebekah. We were on a mission to celebrate a very special 2nd birthday party for another trisomy 18 child named Caleb.  I have been friends with his mom, Jeannette, for about two years. We met on facebook and I started a group called Trisomy 18 Mommies.  

Jeannette and Susan

Jeannette is my BFF - we've shared the 'Trisomy Journey' tears, fears, and joys together... but it has always been 'virtually'. We would even talk on the phone several times per week, but we had never met in person. 


I was so excited to finally meet her!

Rebekah and Caleb in their 'wedding' clothes.

Before the trip, Jeannette and I joked about dressing up Rebekah and Caleb in wedding garb and taking some photos. Very soon I will have a video slide show of this event!  Although it started out as a fun idea, in the back of our head there was always the reality that they will most likely never get to experience a real wedding. 

Rebekah and Caleb holding hands. :-)

The birthday party was amazing and I got to meet, not only Jeannette and Caleb, but several other special friends!!

What's really amazing is that Caleb's local news has been following his story from the beginning.  Here is a link to the most recent story about his birthday party and all of us who traveled to be there for the special occasion! Caleb Turns Two Amid Support For Edwards Syndrome Kids  


They have published several newspaper articles about Caleb and the journalist following Caleb's story recently posted a mini-documentary about him (below)!

If you'd like to keep up with Caleb's story, here is Jeannette's blog. 

The VALUE of One Extra Chromosome

Trisomy Awareness Month is coming to an end. There are a lot of thoughts I wanted to share, but I don't get as much time to blog as I used to - which is a good thing! It means I am not in a hospital room somewhere, but living life with my family!


This video from a Trisomy 18 Angel Mom, Katie Weaver, says it all!  It is full of children with trisomy 18, 13, 9, and other similar variations. (Rebekah has a little video blurb at 4:18!)  Katie is also the one who created all of the awesome t-shirt designs on my Trisomy Awareness Month - Online Support post.

How I wish all of the doctors would watch this video! Too many of them consider these children incompatible with life because of an extra chromosome. They assume that these beautiful children will never be of value to society, and therefore can be tossed aside, refused medical care, or terminated before even given a chance.  Bearing them is considered a misfortune, and supporting their life is a burden to society.


The definition of value is relative worth, merit, or importance; or the worth of something in terms of the amount of other things for which it can be exchanged or in terms of some medium of exchange. In today's society, we place value on a person based on how they look, how smart they are, how much money they make, how 'successful' they are, social status, popularity...   


But God has a different definition of value. Genesis 1:7 tells us that God created man in his own image. And Psalm 139 beautifully explains how God sees and knows us, how he created our inmost being, knitting us together in our mother's womb. Your see, God desires for ALL of us to create value in this world. He wants us to make the world just a little bit better than it was when we got here - and the "little bit better" that we create is our true value to the world. God places infinite value upon all people, no matter their race, gender, social status, economic situation, or (dare I say it?) genetic and health disorders!  Our length of time on earth also does not determine our value.  Jesus' ministry only lasted approximately 3.5 years - yet his life changed the course of history, affecting world religions, our calendar, and the lives of those who come to personally know him.


The children in this video (and those like them) add more value to the world than some of the world's most 'successful' people. They teach us unconditional love, they teach us an appreciation for all of the things we take for granted, they teach us about miracles and that scientists and doctors don't know everything and can't explain everything, they draw us closer to God and show us the real 'value' of life!  And the bottom line is, they are also created in the image of God.  If we love our God as we are commanded to do, we will also love those that He loves!

So I choose to see the value in every life, 

and to love those that He loves.

Trisomy Awareness Month - Online Support

MARCH IS TRISOMY AWARENESS MONTH

Trisomy 21, Down's Syndrome, has had support of the medical community for some time now, but that is not the case with Trisomy 18 (Edward's Syndrome), Trisomy 13 (Patau's Syndrome), and any number of other chromosome trisomies and deletions.  I want to list resources that have been so important to me in this journey, sources that provide hope and help. 

BACKGROUND

When I was pregnant with Rebekah in 2008-09, we had perinatal hospice support (which was very helpful in emotionally preparing us) and had even planned her funeral before she was born.  Rebekah survived birth and we took her home on hospice care.  I searched the internet for stories of hope.  I found a few blogs of kids living with trisomy 18, but there really were not that many positive online sources to be found. 


I joined the facebook community at that time, not willing to give up hope for our child.  I began connecting with trisomy 18 families from around the world, and started a facebook group called 'Trisomy 18 Mommies' that helped us connect even faster.  Of course, there are dozens of trisomy-related groups now, but this was my window into a new world of possibilities for our daughter.

As I learned more about other miracle children and as Rebekah solidified what we already knew - she was not a 'vegetable' or an 'unfortunate mistake', it didn't take us long before we ditched 'palliative care' for our daughter, and started treating her medical needs as we would any of our other children.

Love it or hate it, FACEBOOK has provided us with an EXPLOSION of online connections and resources for the trisomy community. Once on, you can be quickly connected with hundreds of families sharing the same diagnosis and having the same medical conditions as your child. We have been able to utilize these connections to get medical support for several children that were refused medical care, and we have also been able to use these connections to hook families up with doctors that are willing to provide medical interventions. Most of all, the networking of parents has provided an INCREDIBLE wealth of information - trisomy families are being more aggressive and proactive as a result. And I have seen more HELP given to families of living trisomy kids through these connections than through any foundation or organization out there.

I have used this online community of friends along with my list of resources below to help me in this journey.  These resources will provide positive support throughout all stages of this journey. But daily contact with others who understand your pain and joys in this journey is critical!  I encourage anyone finding this blog to get on facebook and join the largest and most active group or trisomy families anywhere! 

RESOURCES

These are listed in alphabetical order. This is, by no means, a definitive list.  And while these are great resources, the BEST resource is the online facebook community because it is not subject to any one organization's limitations, red tape, or politics.  

• Be Not Afraid - This is an online outreach to parents who have received a poor or difficult prenatal diagnosis. Be Not Afraid Facebook Page
  
• Facebook Groups
• Trisomy 18 Mommies - Originally started for trisomy 18 moms, the list now has some dads and some other related disorders like trisomy 13.
• Trisomy 18/13 Journey - Created after trisomy 18 mommies to pull in other families and share 'journey' experiences.
• Faces of Trisomy - Created to raise awareness for all kinds of trisomy (except 21 - Down's Syndrome). Lots of encouraging pictures here!
• SOFT - Support Organization for Trisomy
• Trisomy Awareness 2011 Facebook Photo Album - Thanks to Alisha Hersman-Hauber for the amazing photos and blurbs about kids like Rebekah, redefining 'incompatible with life'! These will eventually become part of a living with trisomy 18 site!
  
• Hope for Trisomy 18 & 13 - Funding research, promoting education, raising awareness, and changing lives. Also links to Gemma's Bears (gifts for unborn/newborn trisomy 13/18 babies) and Payton's Bearts (Stuffed Bear gift for living trisomy 13/18 birthdays)
  
• Iron Man for Kids - This is an organization that seeks to bring awareness and support for trisomy 13 and 18 families through participation in, and hosting of, sporting events. This family doesn't even have a trisomy child, but they have done a lot for the trisomy community and awareness!
  
• Living with Trisomy 13 - Offering support and resources to trisomy 13 families and an online directory of Trisomy 13 children! Living With Trisomy 13 Facebook Page
  
• Molly Bear Foundation - Provides supplemental financial assistance to families of Trisomy 18 kids. Molly Bear Facebook Page
  
• Noah's Never Ending Rainbow - This is a national (USA) trisomy organization with a mission to educate, advocate, raise public awareness, promote strategic alliances, and assist families.  Noah's Never Ending Rainbow Facebook Page.
  
• Now I Lay Me Down To Sleep - Remembrance photography provided for free for families with adverse prenatal diagnosis or infant death. NILMDTS Facebook Page
  
• Prenatal Partners for Life - Support and encouragement for families carrying to term with an adverse prenatal diagnosis and support for raising special needs children. Prenatal Partners for Life Facebook Page
  
• Rowan Tree Foundation - Helping families heal after the loss of a precious child. Rowan Tree Foundation Facebook Page
  
• SOFT - Support Organization for Trisomy 18, 13, and Trisomy Related Disorders - This is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome trisomy disorder, and education to families and professionals interested in the care of these children. You can purchase books on care of trisomy kids (great resources for new parents!) and they have an annual conference where families get together and support each other. SOFT does have chapters in other countries so this is the one related nonprofit out there that is truly a global organization.  They are also tied into the hospital systems in the US, so information published here gets out to the hospitals. Please consider joining this organization!  S.O.F.T. Facebook Page
  
• TRIS and Living With Trisomy - Ongoing research project / database for Tracking Rare Incidence Syndromes that also maintains links to helpful groups for every chromosome.
  
• Trisomy 18 Foundation - Provides support and information to trisomy 18 families. Trisomy 18 Foundation
  
• Trisomy Online - Email lists that connect you internationally with other families. I am on the tri-med list and have learned a lot from the other families. I don't personally participate in a lot of the conversations, but it is a good resource to see how medical issues are handled internationally.
  
• Trisomy 18/13 Awareness T-shirts - Thanks to Katie Weaver for her awesome designs! You can buy lots of trisomy awareness items and proceeds go to Noah's Never Ending Rainbow. The designs on this blog entry are from her and you can find a lot more at:
• http://www.cafepress.com/TrisomyTsbyKT
• http://trisomy.spreadshirt.com/
• You Tube - there are MANY videos showing trisomy 18 and 13 kids hitting milestones and thriving! Just search for something like trisomy hope in the you tube search bar and you will get positive videos. Stay away from the school project videos filled with erroneous information.

Idaho Senate panel passes 20 week abortion ban

WARNING, WARNING - This is a controversial topic about a very deep and painful subject. I will not compromise or debate my beliefs.  (i.e. please no blasting me on this topic with your disagreements - simply stop right here.)

Why this was on an msn money link, I'm not sure, but you can access the link for the complete article here.  Basically the Idaho senate decided it was cruel and painful to the baby to perform an abortion after 20 weeks. The abortionist doctor, of course, countered. He used the argument below.

Dr. Glenn Weyhrich, a Boise medical doctor who performs abortion services, said an absolute ban on such procedures after 20 weeks could force a woman to deliver a baby she knows is destined to die, causing deep psychological trauma and suffering, he said.

"In my experience, I've have not had any experience with women who opted to carry the pregnancy (with a fetal anomaly) to term," Weyhrich said. "The way this bill is written, the woman would be obligated to carry those pregnancies to term."

I am prolife, and I don't apologize for my beliefs. I don't think it's okay (on one hand) for a mother to abort her baby, but (on the other hand) if someone else kills her unborn baby, its manslaughter.  I think it is insane to think it is humane to do late term abortions (as the article points out too that pain receptors are well in place by 20 weeks, and the procedure of sucking out the brains is quite gruesome). I don't condemn anyone who has made any abortion decision, it is one I am glad I will never have to make.  We must each live with our own choices in life.

I DO believe that the choice to abort is not an easy one that women walk away from unharmed. I think it is as, if not more, emotionally devastating as the possibility of bearing a terminal child and planning the funeral before you even get to see the sweet face of your baby. The abortion decision can elicit all kinds of self-inflicted emotional pain and goes against the grain of what we were created to do.

God tells us that we are made in His image, created according to His plan, and made for a specific purpose. EVEN if it is a 'terminal' child, or a child conceived out of hatred and pain, or just an unwanted nuisance.

For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.  Ephesians 2:10 

I think I can speak for the majority of my trisomy friends (including those that lost their baby at or shortly after birth) that the psychological trauma and suffering were not reasons to abort. Yes, it hurts, it's 'not fair', we don't understand 'why me', and the pain doesn't go away. But there is also an unexplainable joy in bringing any child of God into the world, even if having to bid him/her farewell too soon.

That this doctor has NEVER had an experience with a woman who opted to carry a child 'incompatible with life' to term is...just very sad.  I am sad for him and for all the women that believe that lie.  I am also sad for all the people that buy into the lie that a condition can be deemed so 'incompatible with life' that abortion is the only logical answer. 

I praise God that we did not make such a decision for Rebekah. I praise God for all of the wonderful trisomy babies I have met in the last two years and for the parents that also did not make an abortion decision. I thank God for the incredible friendships that have resulted from my personal journey. 

Several moms have shared that they chose abortion based on false information that there was no hope for their child. And now, they see all of these children thriving and bringing joy to their families, and they have deep regret and sorrow.  And they wonder, 'what if...' For all of you, please know that there is a release from that bondage!

"If we confess our sins, He is faithful and just to forgive us our sins, and to cleanse us from all unrighteousness." I John 1:9 

May God bless all of those who speak up and fight for those who cannot speak or fight for themselves.

Putting On My Battle Gear

Rebekah has been sick for well over 11 days now. We went to the pediatrician's office two Saturdays ago to get her checked out. She had upper respiratory illness (URI) symptoms like slightly discolored and thickened mucous, deep cough needed to work the mucous out of her lungs, low grade fever. In the past, we would test for all kinds of URI things (RSV, chest x-ray for pneumonia, MRSA, etc) with negative results and all of her symptoms led to, believe it or not, a urinary tract infection (UTI)!

So she sees this new doctor that Saturday who actually listens to me, but in the process does nothing but cath her to check for a UTI. The results after a 48 hour culture were still negative. So all week we have done nothing but 'manage' it at home with breathing treatments, lots of suctioning, and some extra love.

Smiling for the camera despite not feeling 100%!

Then, last week on Thursday night, she threw up and aspirated (it went right into her trach opening and scared me to death!). Called the doctor Friday morning to request a 'preventative antibiotic', since her risk of pneumonia due to aspiration is high. They said no to the antibiotic.  In treating her like a 'normal' child, they will not prescribe antibito  Good news is, she hasn't gotten worse. Bad news, she's not better either.

Why do I feel that going to any doctor appointment with her is like pulling out the battle gear and putting it on? It feels heavy and oppressive! I am the mom, why do I let these doctors intimidate me and not speak my mind? Why do I accept their answers even though I am questioning inside?  It's kind of funny because I want them to see her / treat her as a 'normal' child...but when she is sick, I want them to remember she is fragile and needs special consideration. Why can't I have it both ways? 

Such is life with our little Rebekah!  Guess it would be too boring any other way...

A Month To Celebrate!

Delight yourself in the LORD and he will give you the desires of your heart. -Psalm 37:4

This is a fabulous celebratory month for Rebekah!  I needed to share all of these milestones before I forget them!

I pray that this information about Rebekah continues to bring others closer to God, provides hope for those facing the painful road of carrying a trisomy 18 child, and makes those in the medical community question the text books and outdated/skewed statistics about children labeled 'incompatible with life' before they are even born to this world.

Medical/Health-Related Milestones

• 10/21/10 - Rebekah is 18 months old!! Hurray!!
• It has been a little over a year since Rebekah has been admitted to the hospital for an illness! She did get RSV last February, but we managed her care AT HOME. Since then, she has had a few other illnesses, but is getting better and better at fighting them off and recovering quickly. None of them required hospitalization overnight!
• She is becoming more and more stable. Even when she gets a cold, we are only minimally needing oxygen supplements for her.
• Despite her trach and diagnosis of being likely to aspirate, she has NEVER had pneumonia! Also, despite her trach and the advice not to orally feed her, we have been successful at giving therapeutic amounts of food with no signs of aspiration!  In 2011, we will be working on trying to get these feeds up to an amount that will decrease what she received by her g-tube.
• She has been cleared by the cardiologist and only needs annual checkups. The nephrologist has cleared her from the concern of chronic hypertension. She has no pulmonary hypertension and, despite her horseshoe kidney anatomy, her kidneys seem to be functioning properly and doing their job well. Despite her neurological issues, we are still blessed with no seizure activity. Her health is pretty amazing given all of her anomalies.

Developmental Milestones

• Rebekah is rolling from her stomach to back, and back to either side! We think she can roll all the way to her tummy, but she HATES being on her tummy. Just seeing her roll side-to-side is quite an improvement in her mobility! It allows her to scoot around and rotate her body when lying on the floor.
• She is now weight-bearing on her legs!
• She is giving open-mouth baby kisses!
• She plays peekaboo with her eyes by squiting them shut then peeking out behind those long beautiful lashes. She doesn't use her hands much, so we will take the handless form of peekaboo!
• She can sit for about a minute before falling over. She does not have the reflexes to catch herself, which means sitting requires much more balance. We are diligently working on her arm and hands weight-bearing and hoping to see her more actively catch herself in the near future, which will lead to longer and more consistent sitting ability.
• She is developing a sense of humor and finds it amusing to push things off her tray and watch everyone retrieve stuff for her!
• She is developing clear likes and dislikes, showing her opinion, and clearly demonstrating people preferences and stranger anxiety. She is developing a lovely toddler attitude!
• She definitely focuses on people and things she is interested in. She will watch her favorite videos over and over with much intensity.

Other Celebrations

• We have had nursing care for Rebekah for one year now! I attribute her health and development to this!!  Having her Nurse Becky here for her 5 days a week keeps her healthier and gives her a lot more therapy time than I could ever manage on my own with all of our boys!
• When we were expecting Rebekah, we made funeral plans before she was even born. Those plans have been long forgotten, and we actually just went through the process of redoing our wills to plan a future for Rebekah including a trust fund that would protect her from any income and asset assessment that might cause her to lose her Medicaid Tefra benefits. The process of moving from a 'death' to a 'life' view has been amazing.
• Rebekah continues to be a blessing to many and a constant reminder to us that miracles do still happen!   We thank God everyday for the honor of caring for her.
  

While Trisomy 18 may be a diagnosis, it is NOT a prognosis. Each of these children, created like us in the image of God, deserve a chance to love and be loved. Their purpose here on earth is not to become rich and famous, it is to teach us about humanity, compassion, and grace.

This video demonstrates how Rebekah (17 months) interacts with her brother, receiving and giving affection. We captured some of her first 'kisses' in this video - enjoy!

In this video, Rebekah (17 months old) is just starting to initiate weight-bearing on her legs. It kind of surprised us how this behavior all of a sudden emerged. We are in the process of reviewing standers for her and hope to order one soon so she can keep working on this skill!

Web-Based Doctor Referral System for Trisomy Kids

Trisomy 18 and 13 are deemed 'incompatible with life' by the medical community. The statistics are staggering, with only 10% of pregnancies resulting in live births, and the majority of those dying by the median age of 2 weeks. Looks pretty bleak, huh?

But let's consider some FACTS the the statistics hide...

• Many, if not most, of KNOWN trisomy 13/18 (and even 21 - Down's Syndrome) pregnancies are terminated because parents are told how terribly hard it will be to manage a child that is severely affected mentally and physically. These babies are never given a chance - they skew the statistics and make it look like lives that are not 'viable'.
• Most trisomy 13/18 babies, when born, are put on hospice and sent home so that families can enjoy what little time they have with them. Some of this is because of the medical community's push to not extend the 'life' of these incompatible and undesirable children. Some is because parents trust and believe in the doctors and medical community to give us truthful information. Our own Rebekah was put on hospice out of the hospital, not because we didn't want to give her a chance, but because we believed the perpetuated lie that these children are 'incompatible'. It didn't take us long to figure out she was a fighter, and well worth fighting for!
• And the rest of them? Yes, there is a percent that will not make it because of the combination of conditions they have, but many WOULD make it if the medical community would see value in their lives and afford them the same life-saving interventions that 'normal' children with anomalies are given without second thought. Many of my trisomy friend families have actually been denied life-saving operations for their children, even children that have proven they are compatible with life and have lived with their conditions past one year of age.

Out of all the trisomy 13/18 resources out there, there is no good system for helping parents find the medical resources (doctors and hospitals) willing to work with them to help these children. There is an exciting project out there designed to do just that! But it needs YOUR help to get the grant money necessary to fund its inception.

Even if you do not have a trisomy child, PLEASE vote everyday in August for this project. You can vote online once per day, and text once per day. Please help Rebekah and her friends by supporting efforts to bring REAL help to the living kids of trisomy 13/18! Let's work together to show the world that these children should not be labeled statistically as 'incompatible with life'.

They deserve a chance...
and YOUR vote!

Trisomy 13 and Trisomy 18, and related numbered Trisomy Variations.... Families, Friends, Missions of HOPE coming together to VOTE---Have you voted today? If you don't see this link on your Trisomy Support, resources, Please post and share. Bombard them.. We need to win this challenge. DAILY VOTING, by FACEBOOK VOTING and TEXT (Text 101529 to Pepsi at 73774). And if your posts get deleted, then you know this resource you frequent is NOT coming together with the TEAM of Trisomy Sites working together. Then you need to QUESTION WHY? Why would a support organization not want to help all of TRISOMY Families in this way... So keep your eyes open and be aware of those sites that are all SIGNIFICANT in coming together for the common good. Thanks for your support, it is via the SMALL and many creative sites that we have made the most SIGNIFICANT CHANGE in how OUR PRECIOUS CHILDREN ARE SEEN and TREATED! God Bless you ALL in your efforts for our KIDS.

The 'ME' in Moment

I have not posted in two months. It's been busy ans stressful with many doctor visits and diagnoses. Then I just didn't feel like it. Until now...

What I am about to share here is extremely private and soul-bearing. I ask that you read it with a loving, non-judgmental heart, because I feel compelled to share it. These are feelings that I think many trisomy 18 (and other special needs) moms go through. And I know I am strong enough to share in the hopes that it will help someone else on their journey too. My prayer for Rebekah has always been that she would have a definitive purpose in this world to lead others closer to Jesus. So please keep any harsh comments to yourself and use this as a lesson in empathy and love.

I know it’s selfish, I know it’s not logical, and you’ll have to excuse my “me” moment… afterall, where would moMEnt be without 'me' in the middle?

I have always been and am still praising God for the amazing miracle of Rebekah. I am grateful for every day, every moment - even though it is stressful and exhausting. I do not regret her, and I wouldn’t give her up for anything. But I am having a moment of overwhelming helplessness and despair.

I have tried to be strong since her birth, preparing for both the worst and the best to happen. And I don’t think it started to be as draining for me until we got some recent medical assessments that just continue to emphasize what a fragile and short-lived life Rebekah will have, without God’s continuing grace to grant her time with us. Then I went to a recent playdate and saw some ‘normal’ children about Rebekah’s age sitting, walking, talking, playing… And it just hit me – this wave of utter despair and sadness. A grieving for what could’ve (should’ve) been and what will never be. Mourning for the day that will inevitably come, and a mourning for friendships forgotten in this lonely journey. I don't fit in anymore. There isn't a comfortable place for me.

And Lord knows, I have tried to lean on Jesus through this experience! Let’s face it; I can’t really rely on anyone else anyway. My friends of ‘normal’ kids just don’t quite get it, and I am sure they don’t want to listen to conversation after conversation about Rebekah. It might make them feel a little guilty because they have normal, healthy kids. It might make them feel uncomfortable seeing an ‘abnormal’ baby. It might (gasp) make them pity me. Oh no, I don’t need that one! I am right where I am supposed to be and there is a reason and purpose for it. I have no doubt about that. And there are even a few that were so supportive of my pregnancy and situation, but then when she decided to fight to live and we fought to save her, they disappeared into the woodwork also. And because I can't leave the house at a moment's notice, it’s been ‘out of sight, out of mind’, because it’s easier to ignore the relationships in our life that take more effort and energy. Believe me, I KNOW that. At this point, my relationships with anyone take a lot more energy out of me too, more than I think any of you 'normal' moms can ever know or appreciate. It is painful to see ‘normal’ every day and know I cannot have it. It is extremely draining to be strong for everyone around me and ‘pretend’ like life is great. And while I do have a trisomy family on facebook for support, they are busy and stressed too and, unfortunately, most of them are ‘virtual’ friends. At least, I guess, I know who my ‘real’ friends are these days.

Even though we have been faced with a better outcome than we had ever hoped for, it is still life-draining to daily wonder the fate of your child.

• Why can’t I just happy that my daughter is alive?
• Why can’t I just appreciate the services that pay for nursing and equipment?
• Why can’t I acknowledge the blessings in my four healthy adorable boys?
• Why are bitter feelings creeping into my soul, leaving me to feel chewed up and spit out?
• Why does serving others no longer fill me with joy, but leave me with an empty spot in my soul?
• Why am I all of a sudden apathetic about everything, wanting to sleep in and accomplish nothing worthwhile all day long?
• Why do little things people say about me that normally wouldn’t bother me all of a sudden cut to the bone and leave me a crying and self-pitying shell of who I know I really am?
• Why do I sometimes wonder what life would be like if Rebekah hadn’t made it? (Please understand that I absolutely would not want it that way, but these feelings still pop into your head as you play the ‘what-if?’ mental game with yourself.)
• Why, why. why...

So I talked to a few of my virtual friends because I have been feeling so down on myself for these feelings of jealousy, despair, ugliness, and apathy. I was afraid I was abnormal and that God was going to be angry at me for all of these selfish, and, yes, bitter feelings. Maybe he would stop blessing Rebekah because of my moMEnt I am having. I am truly feeling like Job about now, kind of forgotten and left to ‘rot’. Friends that don’t have anything supportive to say, other than it’s me that is the problem. And I know to some extent that may be true.

But I know something else too that was confirmed through conversations with other moms who are going through the same life journey… THIS IS NORMAL! Want to know something else too? It doesn’t matter what anyone else thinks about me and my situation. Despite how it might appear, God IS on my side and there will be a positive outcome to all of this inner turmoil.

Jeremiah 29:11 - For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

I KNOW there is a plan in all of this and for whatever temporary suffering we go through here on earth. I also know that the Apostle Paul went through some major suffering that bordered on depression. He begged for a different outcome, yet finally succumbed to the Lord’s will.

2 Corinthians 12:7-10 - To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

So there you have it - I am bearing my soul and sharing my weakness with YOU, who have read this far. My hope for you is that you will be blessed to know that there is a plan and purpose to everything and that God’s grace can cover up our weakness and make us strong.

And for those of you who may fall into the category of old and lost friends, know this… I love you anyway.

Multi-Purpose at a Price That Can't Be Beat!

Homer's Multi-Purpose Paint Bucket from Home Depot - Priced $2.34

We recently made a quick trip to see my brother's family in Atlanta. I needed to give Rebekah a bath, and had not brought her baby bath (which she is almost too big for anyway). My brother and sister-in-law are way pass the baby stage, so no more baby paraphernalia to borrow during visits. And because of Rebekah's trach and not being able to sit up, I didn't want to use the regular bathtub. So I borrowed my brother's 'Home Depot Multi-Purpose Paint Bucket' and used it as a bath. After all, isn't there some sort of fancy-schmancy fad-tub out there that resembles an over-priced bucket?

Rebekah just got put into the bucket, and didn't know what to think about it.

Her head didn't reach to the top of the bucket, so I think she was overwhelmed by 'orange'.

But as I started to dump some water in, she looked down and gleefully eyed the water.

Then she tried putting her hands in the water. (I wasn't quick enough with the camera.)

All clean and ready to get dressed!

All-in-all, I'd give the Home Depot Multi-Purpose Bucket 4.5 out of 5 stars for multi-purposefulness at a price you can't beat. Could I shave a few inches off the height so Rebekah might see better over the top of the bucket, and choose a different color, I would gladly change my rating to 5. Now, as for the $43 Spa Baby European Style Tub...save your money!

Reflections on the One Year Anniversary of Rebekah's Tracheostomy

Rebekah - June 2, 2009 - Shortly after tracheostomy and g-tube operations.

Rebekah - May 14, 2010 - Playing with the Occupational Therapist

By the time Rebekah was 1 month old, she was having such severe apnea attacks that we nick-named her 'Blue Belle' because she frequently turned blue. In fact, in one 24 hour period, her monitor recorded a total of 384 events and maxed out the memory after just being downloaded! So its really no wonder why she was our Blue Belle.

Despite her apnea, she managed to grow and fight for life - but we were worn out. Finally, in a point of desperation, exhaustion, and hope, we decided 'palliative care' was not enough and we admitted her to the local Children's Hospital. It didn't take long for us to hear more than one conversation with a medical professional that our 'incompatible with life' daughter most likely had central apnea because her brain wasn't functioning properly and, if we continue down the path we were headed, she would end up trached, on a ventilator...a virtual vegetable with no emotions, reactions, awareness. And looking down the road a year from 'now', we would, like so many other parents, regret the decisions we were about to make.

Thankfully we did not listen to those opinions, and we requested a bunch of tests to determine exactly why Rebekah was having so many apnea attacks. She had a CT scan, a bronchoscopy, a sleep study, a swallow study, an MII (stomach acid probe test), all kinds of blood tests and cultures. Surprising all of the doctors, the evidence post-tests pointed to obstructive apnea in her upper airways, most likely caused by her micrognathia (small jaw). Within a two week period of these tests and trying out various solutions to address the obstruction, it was decided the easiest solution to give her the best quality of life outside of the hospital was a tracheostomy. Exactly one year ago on June 2, 2009, Rebekah had this life-saving operation and began the road to 'Redefining Incompatible with Life'! So yes, the doctor was right about the tracheostomy. But the rest of the picture is significantly different.

Was it easy? No, absolutely not. There were a lot of sacrifices across the board in our family. Our children were cared for by friends and church members for a month while Michael or I stayed by Rebekah's side around the clock. When she came home from the hospital, she was extremely fragile and we did not go anywhere or do anything. My kids' had a pretty 'boring' summer with no fun things to do. We didn't venture out very often. I was consumed with the task of caring for Rebekah and their quality time with Mommy and Daddy suffered for many months and into the fall school year.

Was it worth it? Absolutely YES! Despite all of the sacrifices and lack of 'fun', our family learned some very important lessons.

• We make sacrifices daily for the ones we love.
• We stand beside people when they are at their weakest.
• We help those who cannot help themselves.
• We love people (such as those who did not agree with our pursuit of extending Rebekah's life), even when they are unlovable.
• We humbly accept help when we cannot do something alone.
• We get to witness the hand of God at work when we are faithful and loyal to Him.
• Most of all, I think they learned that Mommy and Daddy love them all and would do anything for any one of them, and that EVERY life deserves a chance (even those that do not fall into the category of 'normal').

Rebekah may be extremely delayed, we cannot just get up and go somewhere at a whim anymore, and our family life doesn't fall into the category of 'normal', but here we are a year later with a thriving happy baby that most definitely knows us, loves us, and has an opinion about many things that she is more than happy to share! And, all praise given to God for Rebekah's progress and strength, this summer will restore the memories of fun summer breaks with vacations, visits to family, and lots of activities to fill up weeks on the summer calendar.

It still isn't easy...

• We've had some stressful moments along the way, but adversity can bring family closer together if you are willing to love one another and sacrifice for each other.
• Our family makes choices and decisions based on a love of God, a much deeper understanding of the fragility of life, and believing in the blessing of children. So our choices and decisions do not always follow the mainstream way of thinking. For that, I am often excluded from the crowd.
• I've lost some friends along the way. I'm sure it wasn't on purpose on either side, but when you just can't up and go when you want to, well...people tend to forget about you after awhile. (Out of sight, out of mind...). So I hear from my 'old' friends a lot less and that is jsut a sad fact of life. It does, at times, make me feel very lonely and secluded though, and I may have a momentary pity party for myself. That is, until my four boys come and give me a big hug and Rebekah bestows on my a smile that would melt the coldest of hearts.
• There is always that fear in the back of your mind that the scale will inevitably tip the other way and I will have to eventually face the inevitable. Each week brings more news of T-18 pregnancies that resulted in sadness or sick children that have lost the battle. The statistical evidence glares me in the face daily, and I feel like a momentary lottery winner with my 'long-term survivor'. But the truth is that death is a reality for every single one of us here on earth, because NONE of us are guaranteed another moment. So we need to enjoy each moment we have and fill it with important, purposeful things that we will not regret when we look back on our life.
  

Do I regret the past year and the decisions we've made?
How can I? I have a husband that loves and cherishes me, I have a beautiful family of five kids, I have a support group of t-18 friends that understand the hardships and blessings, and I know more than ever before that my Lord and Savior holds me close and comforts me.

Besides Rebekah redefining incompatible with life, I think I have also redefined me. I think the Lord has opened my eyes a lot in the past year. In general, little things bother me a lot less than they used to. It's not quite so important for my way to be the way things are done. It's not as necessary to get the last word in during a conversation or disagreement. I don't need to impress anyone. It's a lot less important to keep up with the Joneses, or for that matter, even care what they are up to. And I think I can truly love others much better than I could before (or at least understand what that means!).

I am in a good place right now. Our family is in a good place. And it is due to the blessing of raising Rebekah. So a year later, I asolutely do NOT regret any decision we've made or the changes it has brought to our family. We are blessed.

John 1:16 (NIV)
From the fullness of his grace we have all received one blessing after another.