Tuesday, May 31, 2011

{Gavin's 2nd Annual Birthday Give}

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Most people reading this blog know that we have an amazing son named Gavin who died on November 8th 2009 after a life long battle with Mitochondrial disease. This horrible illness caused his organ systems to slowly shut down over the course of his three and a half years.  During his amazing 3 1/2 years, Gavin taught us to never lose hope -- to find joy in the most horrific of situations and peace in the midst of turmoil.  As we look back over the three wonderful birthdays our little boy was able to celebrate here on earth, my heart and mind is flooded with amazing memories. This year, despite his death, we once again choose to celebrate his life. In celebration of Gavin's fifth birthday we are once again organizing a Birthday Give -- a way to give back to the hospital that helped give our little boy 3 1/2 amazing years of life.

Our family lived most of Gavin's life inpatient at the A. I duPont Hospital for Children. We could not have asked for a better group of people to become part of our family -- they provided us with the love and support we so desperately needed during our many years of medical crisis, watched along side us Gavin's little body fail. They welcomed us with open arms, and stood by our side as Gavin took his last breaths. We sensed that even though it was our child that was dying -- we were made to feel like they too were saying good bye to one of their own. These memories are priceless.

During our years inpatient at the hospital we saw a great need for infant toys.  These are often hard to come by as many families take them home after their stay and donations of infant toys are few. So this year we once again will be collecting new infant toys, such as rattles, teething rings  and other small toys to donate to Gavin's Closet located on the 3E inpatient unit -- where Gavin stayed and also to the Child Life department to be spread across the hospital.  


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Last year Gavin's Birthday Give was a huge success -- and to be perfectly honest with you I have so much fear going into this second time around.  I never want the world to forget my little boy and the legacy he left here on earth -- but truth is time is going on and I understand that people are also moving on.  Despite my fears I'm pressing forward.  Truth is -- no matter how many donations we are able to collect, just one toy will impact the life of another family.  

Donations will be accepted all through the month of June. Toys can be mailed to our PO Box, which you can find at the top of this page.  Monetary donations will also be accepted.  We realize that many people don't like to just give money to any old website or cause -- we get that -- so no pressure. But rest assured we will bring you along for the ride and keep everyone informed about how things are going -- not to mention provide lots of photos when we make the delivery! 

Thanks for helping us celebrate our little boy and the impact he had on us all!





Thursday, May 26, 2011

{Our Special Gift}

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God really is amazing.  I know that statement is used so much in the Christian community I feel like it almost looses its power.  I often times look back over my life in just complete awe of the inner workings of what some call fate, or what I have come to know as the intricate orchestration by God of even the tiniest details of my journey.  I look back at all the doors that were closed --  by my own choosing or Gods, and am blown away by the gifts that were laying just behind me at the threshold of each door.

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Every movement Angela takes is pure willpower -- nothing comes easy.  She works very hard for every wave of her hand and swallow of food.  Yet despite these challenges she is moving forward.  Progress.  Progress is an amazing thing.  Progress doesn't necessarily mean it gets any easier but progress brings amazing strength to overcome.  

Progress was our gift waiting at the threshold of Gavin's death.


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It hard to imagine a greater pain than to watch the child who was created in the depths of my body suffer and slowly regress to the point of death. After my baby's four years of struggle both in my womb and out, the ability to be apart of the miracle of progress is nothing more than a divine gift, sculpted by God himself perfectly and beautifully for Adam, Madison and myself.

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It makes me stop still in my chaotic life and recognize just how good He really is -- how faithful he is despite what our circumstances are portraying.

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We've always said that after Gavin's death we really felt like he was leaving us behind a gift -- the ability to carry on his legacy and live life, true life beyond the scope of suffering.  


Little did we know just how amazing that gift really was. It goes beyond a tiny little girl with beautiful curly hair -- it's a gift that speaks of faithfulness, restoration, promises kept and a chance at life once again.

Thursday, May 19, 2011

{Special Needs iPad and IEP Update}

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I have had so many people email as ask where I found the wheelchair mount for the iPad, seen here in this previous posts, so I figured I'd just put it in a post and answer everyone at once. We purchased this mount online -- it's call the articulating arm. This really is an amazing little invention and we use it on a daily basis. 

It took a little while to get comfortable with finding the perfect angles for Angela, but I've got it down to a science now and I can set the arm and fold it down very quickly. 

The site offers an iPad case but you can find one much cheaper at a store like five below or on Amazon.com. A large peice of industrial Velcro attaches to the case and the other side to the arm. We replace the Velcro on a monthly basis to ensure the iPad is very secure. 

Angela contintues to amaze us on a daily basis. She is getting so strong and both visually and developmentally she is really taking off. This week we had her very first IEP meeting which went great. The IEP it's self was pretty easy -- Angela was offered more than enough services. We petitioned for in home therapy since we are not ready to send her to school due to our desire to create permency in our home. I was able to talk down her therapy hours as in my opinion, allowing her to live life outside therapy is totally the best kind of therapy. 

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Anyway, it wasn't exactly the IEP that I felt was so great, it was Angela's presentation during our meeting. Just a month ago when I took her for her evaluation I spent most of the meeting giving her verbal cues to stop many behaviors such as gazing at the lights and wringing and biting her hands. This week I had to correct her maybe only once. She was amazing. I wheeled her into the meeting and she greeted everyone with a smile and hand wave. She played with her iPad and her toys the entire meeting. She was very social, making random eye contact with the therapist throughout the meeting and sending a little wave to them. 

It was so amazing to see. 

We had to change most of her goals as she has progressed so much since last month. Heck -- last month she was totally tube fed and now she eats everything!  Today she also began to drink from a sippie cup -- so far today I've gotten about 4 ounces down -- that is so impressive!

Angela turns three on June 3rd and less than a week later we go to court and finalize in the eyes of the law what we already know in our hearts -- she's ours!  I couldn't be happier to be her mommie.  I thank God on a daily basis for choosing me for this very cool adventure.  

Tuesday, May 17, 2011

{Camp Erin -- Giving Her Time to Grieve}

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Many people know that we are apart of Peter's Place -- a Center for Grieving Children and Families.  Along with providing our family with amazing support over the past 18 months it has also given us access to so many resources for Madison, one of which is Camp Erin.  This past weekend Madison attended her very first sleepover camp for three days and spent time simply being a kid, having fun and also some precious time remembering Gavin.  

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This was such a difficult thing for myself to send her.  At first I figured I'd be ok -- after all I'm about as relaxed at they come, but that second night really got me.  I knew that on that second night they would hold a luminary ceremony.  The ceremony included the kids lighting candles, placing them on the river and watching them float away -- a beautiful display of all the loved ones lost.  The idea of my little girl grieving without me hit me hard.  I guess camp hit me hard on many different levels.  This was the perfect year for Madison to go to camp.  It's a fact that she is growing up -- and her loss is growing more distant.  We will never let Madi forget Gavin, but we as her parents need to allow her to move on.

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As a mother who lost her child, the memories of the very moment Gavin took his last breath will forever be ingrained into my soul -- but Madison is forgetting.  She no longer remembers some of the very intense details of Gavin's suffering, and at first that sounds really positive -- and it is.  But for me as her mommie I have to daily fight back my desire for her to never forget every last details of his life.  Although Madison frequently talks about Gavin and his life on earth, I can't even describe the feeling that comes over me when she shows me a family drawing that does not include Gavin.  Ugh -- it hurts so bad.

But it's ok.  She is moving on.  She is healing.

I'm so grateful for the Moyer Foundation and the staff at Camp Erin.  This was part of her closure -- not forgetting Gavin but closure to the trauma our little girl has endured.  

Friday, May 13, 2011

{Simply Doing Life}

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These past two weeks have been filled with so many random happenings it’s left me with little time to reflect and write.  Now that things are slowing down I’m looking back and thanking God for carrying us through once again.

Nothing major happening -- just simply doing life, our kind of life.  


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Illness made it’s nasty way though our house and took us all down pretty hard -- but Angela took the hardest hit.  She is just finishing up her antibiotics and is finally getting back to the Angela we know, but it took so much to bring her back from lots of regression due to her illness.  


She continues to be our little miracle when it comes to feeding.  She is now taking up to eight ounces by mouth at each meal and I’m so happy to report that she is finally gaining a little weight!  We took her back to the docs yesterday for another minor issue and found out she finally hit the twenty-one pound mark -- that is amazing!  She is still getting tube feeds during the night to make up for her fluid intake, but the progress she has made this month has blown even the experts away!  


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Angela is changing right before our eyes.  It is such an honor to call myself her mommie and be apart of her amazing story.  It’s hard to believe she is the same child I met for the first time back in October of 2010 -- her little brain is healing and I think her spirit is too.  


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Life is amazing.  It’s so hard to see the beauty when you are going through the daily grind -- especially the chaos dealing with chronic issues and disabilities brings along, but it’s totally there waiting to be claimed.



Saturday, May 7, 2011

{This Kind of Mother}

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After Gavin's death Mother's day seems to be the hardest holiday for me to cope with.  That mommie instinct in me gives me that overwhelming desire to gather all three of my little ones and squeeze them so tightly -- and we all know that's just no longer possible.

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I never imagined that I'd ever be a mother -- not to mention this kind of mother.  The kind of mother who understands on the most deepest of levels what it means to cherish each and every breath my little ones take. The kind of mother who was given to ability to push through -- to become a survivor of my own life's chaos.   The kind of mother that was given a chance to love a child who was not born of my flesh but birthed in my soul and spirit -- a bond that nothing can defy.

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I look at my two beautiful little girls and I thank God for allowing me to stand by their side and watch the little details of their lives unfold right before my mommie eyes into this huge amazing thing.  In the quietness of my spirit I breathe in the memory of my little boy -- trying to remember the weight of his little body in my arms and thank God for the opportunity to care for him for three and a half years.   I'd be lying if I said three years was enough but in so many ways Gavin continues to live in a very present way through the very essence of my motherhood.

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This kind of mother carries scars and wounds but also walks strong and proud, as my scars tell an amazing story.

A story of hope and healing.