Miracle among us

I was speaking to a good friend of mine today. She too has struggled with life throwing her a curve ball . Her little guy Matthew was born with a single ventricle , required surgery at 3 days old and will need two additional surgeries before he is probably two. Daily, she  continues to come to terms with a certain sense of uncertainty in the future. She recalled, as people asked her what they could do for her, she would reply "Pray for a miracle". One day as she sat gazing at Matthew it dawned on her, why was she asking them to pray for a miracle ? For right before her eyes was her miracle, Matthew. Often as I am pouring over the internet lately, Mark will ask me what I am looking for. My reply is always the same. "Looking for our miracle." We have always referred to Zoey as our little miracle. I decided today that I must stop searching for another miracle and see what is already before me. Some people may never experience a miracle their whole life . We have been blessed that Zoey bestows on us all , miracles each and every day. Our prayers need to be ones of healing  and guidance . Doctors who seek to do what is in Zoey's best interest. Direction for this journey. Strength and understanding. Wisdom that we are not in control. Thankfulness for each new day. Peace. Peace in our hearts and in our home. For our other children we pray for understanding of why Zoey's young life has been filled with such adversity, knowledge that that adversity will ,in the end, mold them into the adults they will become. These are some of the things people can pray for. For that miracle I have been searching for, has been right before my eyes all along.

Another day

Yesterday proved to be another pretty uneventful day. Zoey continues to be in great spirits so I will take it for what it is. A good moment. As we know things with these little ones can change on a dime so I continue to practice living in this moment or as a good friend has told me, not one day at a time , one Now at a time! I continue to shudder just a bit as I give her each of her shots. This mornings didn't go quite , how should I say, smooth. Instead of a shudder I did a more.... body convulse! Hopefully this will get easier. It does not help that Mark utters an actual gasp as I stick her.... thanks for that honey! Maybe tonight I take Mark out of the equation. Other then that I am happy to report that things seems alright for now. Please see our addition to our page . Caitlin Sarah stayed up until 2:35, to be exact, and did Zoey's video. We think it is absolutely beautiful! She did an amazing job and it is so apparent how much she loves her baby sister. We hope you enjoy it and love it as much as we do.

Calm before the storm

I am not sure what I was expecting yesterday but it turned out to be quite anticlimactic. Thank goodness! Zoey's pediatrician gave her her first injection in the morning and then I was on my own for the evening shot. Well, under his watchful eye. Today we do it at home, totally on our own.  Very scary at first and I am sure with the one this morning I will be filled with much trepidation. However, I have no choice. My baby needs me so I don't intend to let her down. She has been in amazing spirits the last couple days and prior to yesterday and thru this morning her seizure activity has been so minimal. I have no explanation other then maybe God is preparing her for the fight she has ahead of her the next couple of weeks. Calming her little body, letting it rest and not be under so much stress. We return to the pediatrician on wednesday and until then we will keep our eagle eyes on her for any of the numerous side effects she may show. We continue to pray that she may weather this storm and that at the end the skies will open ,the sun will shine , a rainbow will stretch across her world and she may be lifted from this fog that has encased her body the last several weeks. Please keep those prayers coming, as it is what sustains us all. We continue to be grateful for all of you who have supported us , both physically and spiritually . We are blessed , Zoey is blessed. We thank you all beyond words, even the strangers who have visited us here. It is through you all that we garner our strength to face each new day.

Strength for the Journey

I awoke this morning with a certain amount of peace. A feeling that actually surprised me, seeing what lies before us today. I am unsure why today of all days that it comes my way. None the less it is peace. A welcome change from the usual sense of uneasyness that most often inhabits my body. But today I welcome this feeling.  This morning we begin Zoey's first course of ACTH. We pray that she will respond and we will see results quickly however we are all too aware that this may be a longer journey than we wish. This treatment will test her little body at every turn and it will require such dedication on our part to be cognitive and watchful for any possible dangerous side effects. There are numerous side effects,some more significant then others and it is our prayer that Zoey will be spared of most of them. As I sit here, I am reminded of a song from church that has always spoken to me and I would like to share the words with all who have come to visit Zoey's page today. We are asking if you have found your way here today that you pause and say a prayer for this darling child that has brought joy beyond words to her family. A child that is our strength for this journey and who continues to inspire us each and every day with her will power and determination. We ask our Heavenly Father to also be our guide. That with His gentle hand He will protect and cradle Zoey in His loving arms.

I will be, I will be, strength for the journey.

I will be, I will be, strength for the journey.

There is a road meant for you to travel.

Narrow and steep is the shepherds way

and as you say yes letting me guide you,

I will be strength for the journey.

There is a cross meant for you to carry.

There is a cross meant for you alone,

and as you bow down,

In humble surrender, I will be strength

for the journey.

How many times have you doubted my words?

How many times must I call your name?

And as you say "yes"

letting me love you,

I will be strength for the journey.

  

Be still

Several years back I attended a woman's retreat through my church. In the calmness of this morning, when everyone is asleep and the house is quiet I am reminded of a prayer that spoke to me then and seems appropriate for me at this very moment and not so much this moment as in today but in this moment in my life ,this very moment in my life when I feel so defined by the struggles facing Zoey and us as a family. It went like this  " Be still and know that I am God. Be still and know that I am. Be still and know. Be still. Be. " It is that last part that I am so challenged by . Just "being". As a person who has all of my life needed to be in control, have control, it has been extremely difficult to give up and give into the fact that none of what has or will happen, I have any control of. If I decide to just "be" then maybe the rest of the prayer will just fall into place also. Maybe I will let go and allow the great "I Am " to take over and I can focus on right here, right now, not yesterday , not tomorrow but right here this moment. Today I will try to just be. It may not work today but maybe in the trying it will be the first step in giving up and giving in. Today I will just try to "Be".  

TRYING HARD TO KEEP THE FAITH

I have waited to post until tonight knowing Zoey was going for a neurology appointment today and I wanted to give people a full update.I wish I had great news to report but suffice it to say the day had other things in store for us. We are about to embark on yet another leg of this crazy journey.Unchartered territory that will once agin leave me versed in areas I would rather have no knowledge about let alone new medical terminology to wow all my friends with! On a serious note, I am really ticked! Her EEG showed some improvement but not enough to warrant continuing this course of treatment for her seizures. We have been so please by her progress, on an outward appearance. She is rolling like crazy, interacting and doing even new things each day but the seizures are still there, granted less in severity and number but nonetheless there. We need to eliminate them and therefore we have to move on to ACTH. An intense steroid type treatment with tons of side effects and no guarantees. We are frightened for our little Zoey and cannot understand why this darling child must withstand yet another very unnatural thing to be done to her. We need everyones continued prayers because this could prove to be one of the hardest fights to date. I find myself trying to understand how we came to this place, to find our family in almost exactly the same place we were in at this time last year , with such uncertainty before us. A child that has done nothing but fight tooth and nail to be here. A child with unconditional love of all those around her, so forgiving to all that has been done to her. A  child who , like all others, deserves a chance to live her life as full and rich as all the rest of us. A child who's mother is just trying to keep the faith. 

Oh , that smile!

At about 12:15 am last night I was jostled out of a near deep sleep by my 16 year old. She had something to show me. I followed her out to the hallway, as not to wake Zoey, where she proceeded to show me our new blog header, one she had deemed "boring" earlier in the evening. She also loaded the "Little Wonders" song so all of you can hear it when you log on to visit us. I was so proud of her and seeing Zoey's smile was just the perfect thing to see before heading back to bed. However, as always with me, there is always a flip side. It's a nasty habit I have got to break. To understand what I mean you must have a little background on Zoey and her smile. At the beginning of her life I longed to see her smile. All the picture of Down syndrome children I had seen were of these amazing faces with radiant smiles. Zoey basically laid on her back for 5 1/2 months , g-tube fed for 20 hrs. a day and it took everything in her to just survive. It wasn't till after her av canal surgery that the reality of how physically depleted she was hit me. Maybe it was better that way. Prior to surgery Zoey could barely be held, as that was even stressful on her tiny frail body. She would gag and retch all day because the digestion of her milk was stressful for her tiny frail body. She only cried ONCE in 5 1/2 months because that was absolutely too stressful for her tiny frail body. It was the basic human instinct of fight or flight and boy did she fight. So there were no smiles,but then came surgery. I often refer to August 13 as her "birthday". That surgery gave her rebirth. From the moment we saw her eyes open after surgery, we saw light. Her eyes were brighter, she was brighter. After a tense hour  after she was extubated was over, she rested and then it happened. Zoey SMILED! It was like nothing you ever saw. It was if she was saying "thanks for fixing me, I feel lots better."  We have so many pictures from our 8 days in the hospital that are filled with constant smiles. Zoey smiled at everything and everyone from that day on. Then slowly the smiles came less often. She was letting us know something but we couldn't figure it out . Then one day the seizures began and then we realized why that smile was missing. I think that has been the most difficult part of the journey this past 6 weeks ,missing her engaging smile. We have seen it slowly emerging back since she started her medication but my fear is that the smile that lights up the header of this page is one I won't see again. Caitlin once said that if all Zoey ever did was smile and follow her around for the rest of her life ,that would be o.k. and I agree. I have to believe that that Zoey smile will once again light up our world. I have to believe.

"Aim high enough"

Today is earmarked  as World Down Syndrome Day and the date of 3/21 signifies the triplication of the 21st chromosome. The theme is "Aim High enough" and it challenges each and everyone of us regardless if we have a Down child or even know one, it challenges us to bring awareness, ,dedication,acceptance and mostly love to these wonderful human beings who want nothing more than  to have the opportunity, like the rest of us, to live a rich and full life. "Aim high enough" can speak to us all on different levels and for me I immediately thought of a majestic mountain. I thought about how each one of these remarkable people start their lives out with a mountain of sorts to climb. Some come into this world and their journey up that mountain takes a little longer. It may be scattered with a few more challenges that make it  harder to reach that peak. But they persevere and they are sometimes placed on the backs of those who love them to help them climb a little higher. We don't mind, for it is our duty, our responsibility, to carry them and lighten their load. With the love and support of everyone that loves them, they will all reach that mountain top and the view  will be amazing. Our wish is to be standing right beside them gazing out at the beauty that awaits them,encouraging them that there is nothing that they cannot accomplish and with Gods help and with the help of all who love them they will soar from that mountain top and the journey to get there will be worth all the struggle and heartache. And for those that found the mountain too steep and the journey too difficult they are already soaring and their view is more beautiful then any of us could imagine. Please take a moment today to pray for all of these inspiring people and the people who care for them and love them unconditionally. Take a moment on this Holy Day of Good Friday, when Christ gave his life for us so we could even attempt mountains, pause and be reminded of a mountain long ago called Calvary, that has allowed us to even be taking in the grace and beauty of each new day. A very blessed Easter to everyone.

The wings of others

My motivation for this blog was born out of the journeys of others, the journeys of strangers who now, although we have never met face to face, their stories, their children, are my source of strength and I feel as though my life is made richer because of them, I know it is.  I wanted to take a moment to share  little bites of  a few of these amazing families and their inspiring children. We and our children , never set out to be inspirations , but if we do not find that all of what we have endured thus far, is not for a greater good, then it would trivialize the lives of these magical children that have graced our lives.So they, along with ourselves, become inspirations, whether we like it or not. One such child is a little guy named Sam. I hit on his mom Rae's blog a few days before Zoey had her second MRI that would confirm her seizure disorder. Now I, the often cynical Heather of late , could say that it was by coincidence that I happened upon Sam's story, OR I can believe that I was led to him for a far more divine reason, having nothing to do with chance. The choice continues to be mine. This little guy is the first Down syndrome child that I have "met" in the last year that just got nailed by everything under the sun like Zoey. A kindred spirit the two of them and by default , his inspiring mom and myself, my gain. Their story restores in me hope of the future and for that I am grateful beyond words." Slow and steady wins the race" and "Everything is possible....... the impossible just takes a little longer" I owe to Sam and his mom. Thank you Rae and Sam. Another little guy is Jude from the U.K. I was drawn to his dad Ian's post to a group I belong to . I could feel the pain in his words, the desperation  for answers, and the unconditional love for his son through his post. I continued on to his blog and saw first hand the strength of a father,when often it is mothers we hear from and feel for, Dad's, sometimes become the forgotten ones. In this case ,I will never forget the Marrey's from England and a father trying to take care of his family and a child loved for being the perfect boy he is. On to little Miss Chelsea. My connection to her is for obvious reasons . You will know why by just one click on her blog, Dream Big. An endearing Down syndrome child fighting AND winning the battle of leukemia. As most of you know, Zoey must have her blood checked often because of the increased risk of developing leukemia before she is five. A fear that can almost paralyze me at times but one made easier to even visit, by watching the grace and dignity and joy by which this incredible child and her family have taken on what has been placed before them. I continue to be awe struck by each and every entry of their blog. The last little angel is one no longer among us but has left behind gifts that cannot be measured by the length of her short life. Her name was Gabi and she blessed her family and those who loved her beyond any mere words. A visit to her blog makes you wish you had the opportunity to know this sweet child. But her family has allowed strangers, like myself, into their lives during the most joyful and most painful times. How absolutely unselfish. Zoey was born with the same heart defect as Gabi and was actually recovering from her surgery the week Gabi left this world this past August. Again a connection I cannot ignore. There is a quote on Gabi's site "If God brings it to you...... He will also get you through it". I am challenged each and every day  to believe that quote and I will, with the help of the lessons of one tiny little girl , try to have those words resonate daily in my own life. Thank you to all of these children and their families  for allowing me to share parts of their very private and personal journeys, for it is  on their wings that I am often carried . 

  

Brutally honest

I spent a great deal of the day being sad. Not really ever being able to put my finger on the exact reason why. Maybe because the reasons are so very vast. From the miniscule to cataclysmic. From the depths of selfishness,why me,why us,especially why her? To the opposite spectrum of selflessness, why any other mother,father,family and child? A day filled with what if's , past and present. The day was spent in deep introspection in some moments and just plain mindless wandering in others. I cried mostly. I don't feel the anger as often. Does that mean I have come to some level of acceptance? Have I surrendered once again to that which I cannot control?  I do not think I will ever accept this place. Not because I want Zoey to be something different. Because what I want is the daily struggles she endures to be lifted from her tiny body. Made light by some lager power with which I cannot compete. I want joy to reside in my home again. Replace the bitter, stressed, hopeless, inhabitants currently taking it's place. Have I asked too much? Expected too much? Not been obedient and appreciative of the gifts I already have been bestowed? Am I being punished for some past transgression and my child and family are the innocent casualties ? I really cannot wrap my head around it any more. My faith, especially during this Lenten season has been rather none existent. Holy Week, in the past, has always been a priority in our house. However, I am emotionally, physically and spiritually bankrupt, that I feel it will most likely fall to the wayside this year. I am reminded of a quote from Mother Teresa that I found several months back. It was my mantra for awhile but now does not come close to characterizing how I feel. It goes like this"I know God will only give me what I can handle, I just wish He didn't trust me so much." I have sent lots messages letting Him know I am very untrustworthy of late but I suppose He hasn't gotten any of those memos. Today has been a sad day.  

The good, the bad and the ugly

Often my days can be classified using any three of the above descriptions. Today I will spare you the details but suffice it to say it wasn't pretty. In my house I set the tempo for the day and around here "if momma ain't happy, ain't nobody happy" . The stress level around here is palpable. Watching and waiting and wondering if Zoey's darn seizures are going to go away. Is the medicine going to work? It consumes the day and monopolizes the conversations. I try to go about my day as if things are normal,but really, what is normal? Certainly nothing around here resembles normal. Is there such a thing? Zoey has also decided to dislike almost any food that touches her lips. Have no idea where that has come from. We are watching her closely and praying she will snap out of it as quickly as it appeared. Thank goodness she is a good nurser. Mark stayed home today. Say what? Mark,discounting Zoey issues, never,ever misses work. So you know he feels yucky. The other kids? All in all doing well. Jess is finishing up her Jr. year at Pepperdine. Training like a mad woman for her marathon. Side note..... thank you to family and friends who have so generously given to her. She has ,to date, raised $3,320 for the leukemia/lymphoma society. So thank you one and all. Caitlin is on spring break this week. Working at the coffee shop and doing her thing. Taylor has spring break next week and is a stellar employee of In"N Out Burger. That girl works her little tail off. Oh, and she just got her license! Jake Matthew just does his regular 1st grader stuff, happy as a clam just being Jake! Then there is Joe. What can I say? I use to say "if I can handle Joe I can handle anything".  I guess someone up there thought I was doing o.k. because then there came Zoey! Let's sum up Joe to date with ....... today we visited Dr. Kundell,our favorite neighborhood pediatrician ,  I think the term he used was,Oppositional defiance disorder, so yeah, Joe is a hand full! So, as far as my day goes, I will try to salvage what I can and look to tomorrow with no expectations but rather know  I have SOME of the power to chart it's course.

 

Another one bites the dust....

Weekends...they evaporate in an instant. This one especially. Mark started coming down with flu on friday and it really hit him hard today. We all had it a few weeks ago and I really thought he had dodged it. Zoey never did come down with it and lets pray it passes her by this time. Mark has handled not feeling well like most other men...... I'll leave it at that.  Jake turned 7 on friday.He is the sweetest little guy. So joyful,kind and patient,especially with Joe. Dinner here with everyone. Another great birthday celebration,third one in the last 2 weeks with Jessica's only 2 weeks away . My baby will be 21, where ever did the time go? Time does that,much like weekends,evaporate. My problem is, I know how quickly it evaporates but as of late I have not been very good at taking the time to treasure the moments. Something I need to work really hard on so as not to let it all evaporate before my eyes.

Why Little Wonders?

When Zoey  was first born,Caitlin,our 19 year old made me a CD to listen to as I made the daily trek to CHLA everyday. The first song was Wonder,by Natalie Merchant, a song written to speak directly to the hearts of people who have special needs children in their lives. The second song is a song from Rob Thomas, lead singer of Matchbox Twenty. Little Wonders is the title and to this day this song brings tears to my eyes each and every time I hear it and reminds me to pause and take notice of the little wonders in my life. If you have a moment, listen to it . As I become more proficient at blogging I will post maybe a montage of Zoey and you can hear it that way. Be patient as I am so green at this blogging thing. Soon, with the help of my family we will customize this page and" trick it out" with the latest and the greatest! 

The Beginning

My first official entry into the world of blogging! I decided,after much contemplation,that this would be the best way to keep everyone up to date on the crazy but wondrous lives of the Needhams. Especially little Miss Zoey Grace. My inspiration also came from viewing sites of remarkable families taking journeys similar to ours. With the help of my technology hip children and husband I hope to do this latest chapter justice. So welcome ,enjoy and our hopes are that this achieves two things..... one, a little therapy and outlet for me and two a connection between many of us , seperated by distance but never,far from each others hearts.