Its 4am on Christmas Eve morning. Hunter is sleeping in my lap. The same rosy cheeks that came from a bout of crying now make him look like a little cherub as he snoozes.
Dennis and I went to Wal-mart last night, to pick up a few odds and ends for Christmas. While shopping I ran into an old friend from High School; I hadn’t seen her in a long time. She looked sad, so amidst our cordial “how are you” and “hellos” I asked if she was ok. “Not really, I just buried my son today”. It was as if icy cold water had been thrown on me. “Oh my God! I am so sorry!” Our idle chatter suddenly turned into a very emotional, heartfelt exchange…

Her baby died in the womb. From our conversation it seemed as though he was just about full term. She had to go through the birthing experience, even knowing what was in store. I told her I understood, I told her about Hunter. We hugged. My mind and heart have been with her all night. I am heart broken for her. I sat in bed pondering her story and ours…making comparisons and crying for us both.

It is a hard road Dennis and I are on and trust me, I am kicking and screaming, not wanting to travel it and dreading our destination; scenic route please. Still, how can I be bitter when on this night, I can go home to my baby and hug and cuddle him? She can’t. I can buy gifts for him and revel in the holiday season. She can’t. This realization made me feel grateful; it made me feel guilty.

For all of you that have your children this night, hold them tight. A squalling baby, keeping you awake; a surly teenager; giving you heartbreak; a special needs child, giving you challenges....celebrate with gratitude and joy. You can hold them, kiss them, touch them, you can smell their scent, bury your face in their hair, tell them you love them…never take that for granted.

For those of you that have lost a child, please know that they are not lost. They are around you in spirit and in your heart. Feel their love, cherish their memory and know that you will see them again one day; I truly believe that; I have to believe that.

I want to wish you all a very Merry Christmas full of laughter and love. I have to go now, I need to change the cherub’s diaper.

Thank You

I have thought long and hard about how I can thank all of you in a meaningful way, and I am at a loss for words. You see, I will never be able to thank any of you enough for what you have done for us, for me….and so; I want to candidly share with you what you have done for me and my family.

When Dennis and I first started this journey with Hunter, I felt so alone. Their were people that I loved around me, I had Dennis, my best friends and my family supporting me. I know they are what helped me through those darkest days in the beginning, they kept me sane (relatively speaking). Still I felt so isolated and shut out…sometimes even jaded against the world.

Then little moments began to happen….friends and coworkers began to ask about Hunter, and they began to share his story….loved ones saw our struggles and took on the stress and challenge of organizing events that both celebrated and helped our family……events were held, people that didn’t know us said prayers, sent well wishes and made accommodations. They showed up at the events and helped with time, love and donations….people CARED. It hit me with startling clarity….people, even those outside my circle cared. This reality has completely overwhelmed me with love and humbled my once self righteous isolation.

Suddenly the journey that started with sadness, stress and isolation has become the journey that has endeared Hunter into many peoples hearts, it has become the journey of compassion, hope and love. My heart has been filled and I have learned so much. No we are not always in control and no it isn’t always fair, but we must seek out the good in both the situations we are placed in and in the people that want to be there.

This is what all of you have given me. My family, my friends, and all of you that I may not even know…those who cared for my son, prayed, organized, helped, donated, those that have made sacrifices and accommodations for us and those that simply told me how beautiful my son is and expressed their concern….to ALL of you…this is what you have given me and I THANK YOU.

Hunter and I have conversations together, in those precious early morning hours that I get the baby duty night shift. A couple nights ago, I was reflecting on all of this and the events held and people that cared. Hunter was being fussy and it would have been so easy to just feel frustrated and tired, but I didn’t…I was thankful to hold my child that was delighting in hollering his frustrations to me. I decided to share this with Hunter…

I rocked him and patted his bottom and said "Hunter, I know that you have gone through so much, and have so many trials and discomforts...do you know how much you are loved baby boy?" I proceeded to tell him how much I loved him and daddy loved him, how much all of you love him and God and his angels love him. About halfway through the conversation he calmed down was just looking at me. Now, he may have just been wondering what his mother was chattering on and on about….but in my heart, I just know that he could understand what I was saying. I finished our conversation with a

Thank you to him as well. I said “thank you to be willing to go through so much to stay here with your daddy and I. thank you for choosing us as your parents and for teaching all of us so much.” And after all that he was soundly asleep in my arms and I finished my baby shift content and thankful.

Our Holiday Family Picture...

Holidays

Well, its been a long time since I have updated this blog. Medically I suppose I should catch everybody up on what has happened. Its a devastating blow, but one that Hunter has yet again defied. I found out that Hunter has what they call Mitral Valve Stenosis...It means the muscle ring around his valve is thickening and slowly cutting off the circulation so that the blood cannot flow from chamber to chamber. This is probably the single biggest reason for his monthly respiratory distress episodes, caused by edema and pulmonary hypertension (high blood pressure in the lungs). With all of Hunters other issues and his horrible track record for tolerating surgeries, we have decided against putting him through any surgeries on his heart. As a lot of you know, even on a perfectly healthy baby, heart surgeries are extremely risky. We learned of this latest news while Hunter was in the PICU on CPAP...in the beginning of Nov. They told me that with his blood gas being as bad as it was, he may only have a few hours to a few days...they told me they were worried he wouldnt survive the ride home....This was 4 weeks ago. This rollercoaster that Dennis and I have been on has been so stressful, we have gone through the "imminent" loss of our son so many times. I held him all the way home that night, I know I probably shouldnt have, but i couldnt bare having him pass in his car seat.

So...as you all can see...he is still here, and he is still as seemingly "healthy" as always. Just like his ornery little self. Through all of this stress and strife, i remain thankful. I have had so much more time with Hunter then they have ever given me hope for...Only Hunter and God know the plan for him, and I am blessed to be a part of his journey.

So much has happened since this news. Hunters 7 month birthday has come and gone...it is soon to be his 8th months. Thanksgiving has come and gone and I am so thankful he was here to spend it with us. The next goal is Christmas, I cannot tell you how much i hope he chooses to spend it with us. We have the tree up, which he LOVES. We have his stocking, and will soon have his first ornament.

Hunter has been slowly progressing in his grabbing and grasping. He is forever trying to undress me by grabbing my shirt, or he also likes pulling my hair. He is also focusing on faces a lot more, occasionally going cross eyed while doing it. I even think he tried to smile at me when i was acting extraordinarily silly one night...but then he just rolled his eyes instead. He is certainly a little character. I am going to post our Holiday pictures for you to enjoy...boy do i love that little dude's santa outfit!

Dad (dennis) had ankle surgery and has been out of work for a month, we are hoping he will be able to pass his physical and be back to work in January. Because of this he and Hunter have been able to spend a lot more time together...they are inseparable buds.

I want to take this last thought and Thank all of you from the bottom of my heart for your support and donations that you have given to Hunter's website and through his events. You have given us the most precious gift anyone has ever given, the freedom to enjoy our limited time with Hunter. Thank you so much, words cannot express how amazing you guys are and how humbled we are as a family that you have done so much for us. Thank You.

Hello all! Hunter is finally home!

He is doing really well and is nice and cozy comfy in his bouncy seat with his favorite stuffed dog. This was such a long stay at the hospital that Den and I have virtually forgotten our routine when it comes to Hunter and his cares. We do have some Lung treatments to add to his schedule, he gets some inhaler meds and some nebulizer meds as well as some lung "pounding" therapy (similar to kids with cystic fibrosis). He actually really enjoys the pounding...puts him right to sleep. We also got rid of 3 meds off his list, so thats good as well.

I cant explain how Hunter does it,but he just keeps beating the odds...he definitely has his own agenda, and I am simply here to see that we and the medical professionals support it. I will never give up on my son, no matter what pressures are put on me or what the prognosis seems to be. I will also never put him through needless or futile pain. It is such a hard balance. If the pain will lead to a more quality life and more quality time with my son, then i feel that it is worth it. I will never prolong his death, only his life, and he certainly is full of that!

Thank you all so much for caring and loving Hunter and us. I have no idea how I would survive this bittersweet journey with out all of you. Here is wishing for a healthy couple of months without even uttering the word Primary Childrens! I am posting a picture of Hunter on his ride home from Primary...he really has the puppy eyes down...he is pleading for me to take him out of that darn carseat, he hates it.

Tues. 2 Oct. 2007

Hello friends,I wanted to give you an update on our little tooshie monster. As most of you are aware, I came down with a cold that Hunter subsequently caught. They admitted him to Primary just to provide oxygen and supportive care while he got better, but true to form things didn't go quite as planned.

He ended up having some de-sats and they rushed him to the PICU where they tried the bi-pap but then ended up ventilating him. The theory is (because honestly they arent quite sure) that with his cleft palate and aspiration issues it was much harder for him to deal with his increased secretions that came with the cold. So they believe the collapses they see in his lungs are due to these excess secretions, aspirations and the virus. Now that he is on the vent, his lungs are looking better and he is getting all of that goop out of his lungs and seems to be improving. In my opinion, if things continue to go well they may try to extubate him this week some time.

Hunter has been such a trooper during this and continues to watch his mobile and have staring contests with mom and dad. They are continuing to give him sedation because he gets really angry with the tube and fights it so much that the ventilation machine cant do its job! (man you should see the nurses panic when he turns his angry shade of red). so it can be scary, but i think once the tube is out he will feel much better.

On the mommy front, i feel scared for this winter, as I know I can't protect the little guy from everything...and this bug has hit him so hard. This episode made me realize just how fragile he is and to enjoy every minute with my little guy. So for all of you that come to visit dont feel offended if after you wash your hands, I bathe you in Hand sanitizer to boot! ;) ¬ÝI am going to do my best to keep him sheltered from all the little creepy crawlies this winter...wish me luck.
I am going to include a pic of Hunter with his vent. You will note that they have had to stitch the tube to his nose because it wouldnt stay in place (also a cleft palate issue apparently) I almost fainted when they told me about the stitch, but he seems to be ok with it and the tube isnt upsetting him as much since they have done it.

thanks everybody for your thoughts and prayers! i hope tonight finds you together with your loved ones, safe and healthy and sound.

Thursday, 13 Sept. 2007

We're planning Hunter's 5-month birthday party tomorrow. We are celebrating a birthday for him every month as he is ARE MIRCLE! It will be a humble party with cold stone ice cream cakes and refreshments.

Tues. 4 Sept. 2007

As I told ya'll, Hunter is in the PICU but is stable and doing ok. I just found out that he is in the 8lb club! (and almost 5 months old!) We are experiencing little miracles everyday with this cute guy and although we do experience setbacks, we are slowly crawling our way towards victory!
Hunter is meeting Inch-stones every day and we are so blessed to have him here with us. (we don't go by milestones as its looking just a little too far into the future and we want to cherish every second)

We Are so blessed to have "ARE MIRCLE". I wanted to share this picture with you, I feel it really shows Hunter's attitude towards the Dr's and their predictions (They said he wouldn't make it home from the NICU when he was born, and they said he wouldn't make it out of the operating room last month) Doctors Schmocktors!!

I just had to share these cute pictures with you! He is now a big boy at 6lbs and 3oz! These photo's were taken at Primary where we were exchanging the huge hindenburg feeding tube you see there, to a sleek, svelt, smoother model for his comfort.
I also had to show you what a snappy dresser his momma makes him :)

You Guys are Amazing

You guys are amazing friends and I don't know what I would do without you. You enrich my life. I want to share a story with you that I found, it is just how I feel about all the experiences I am goingthrough now. I think you will appreciate it. It is below.

..................................
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland haswindmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.