Sweet Moments....

We have had some busy days... but not too busy to take time out to have some fun. Here is a little bit of what we've been up to. Trying to make every moment count.

Sweet Shaun Kisses

Hands are for kissing

Making the birdie sing

Mrs. Erin visits

Brothers matching

Look how big we are!!

I want a picture with Shaunie too!!

Dancing together

Dancing cheek to cheek

Love Moo Cow

Sitting in the high chair for the first time since coming home!

We love our brother!!

These are just a few moments that we share. I am so thankful for all the love and support poured out on our family. We have been blessed with countless meals, people coming to hold and love on Shaun, play dates and so much more. Thank you for loving on our family.

Hard Questions

One of the reasons I started this blog was to document the journey we are on with an undiagnosed disease and to reach others in a simular situation. actual diagnosis? What does that mean? How long do you think he has? What do you see his death look like? Where do you see his death taking place? Do you have thoughts about a ventilator? What about putting him on a rate? When do we say stop? How do we tell his brothers that Shaun is going to heaven before he grows up? When do we tell them?


 Currently on our journey, we are confronted nearly daily with hard questions. They come from nurses, doctors, hospice staff, and our own minds. Is this going to be what sends Shaun over the edge?
Many of these questions aren't answered yet. They are situational I've decided. I will know when enough is enough. I asked Shaun to tell me. His diagnosis? He has an undetermined mitochondrial disease with cerebellar and brain stem degeneration and hot spots in his basil ganglia. In other words, his brain is shrinking and dying off until it won't function any longer.
How do you ever ask a Mom what their child's death looks like? This question angered me in the beginning. Where does it take place goes right along with it. I didn't birth our precious baby boy saying that his death was going to come so quickly. And I don't even know when it is going to be right now... It could be years away... or weeks away. If I say that I want him home during that time, what are we going to do with the big boys? Are they there? Is our whole family together? I don't know. I think its situational. Is Shaun in distress or is he peaceful? How would I ever go back in that room or worse let another one of our children sleep in that room? Maybe they would want to so they could feel closer to their brother. I don't know. So much to be decided...  I pray that God decides for me and takes him quickly in the middle of the night like He did Sarah. Keep us from having to say, "I give up. Stop." But really it isn't giving up on him... it is releasing him from this trap, maybe even torment, of a body that doesn't work right. It will be hard though because right now he is on machines that will alarm if that takes place. Then what? Do I do nothing? My heart will cry to help him in any way!! Any mother's heart would, I think. Yet I know with the progression of this disease, his normal body functions will cease as the brain deteriorates. It has so much already. When that comes, probably the next thing that will need to be decided is if we put him on a ventilator, at night or even all the time. They can assist or breathe for you... I don't want him to feel like he is suffocating. I know that feeling and it is scary! That is the last thing I want for our boy. Yet, I do not want to keep him here if he is ready to go to the arms of Jesus. Circumstantial again. Can Shaun still interact or can he not? Does he still have that gleam in his eye, reaching for hands to hold next to his cheek? If so, how could I not help him breathe? Is it wrong to not want to see him hurting? Am I hurting him more? I don't know... but again, I think he will tell us.
These are a few of the many thoughts of a Mom who is sitting there watching her son lose the battle yet he is such a little Champion.

I Miss....

I am going to be real for a few minutes. Please bear with me. The last couple of days I have allowed myself to feel... allowed myself to grieve. What? you may say. Well, I am grieving over all the dreams that will never happen with Shaun. I grieve over the loss of his beautiful sounds... I miss them so much! I grieve over the walker being sent back to the therapists because he is not strong enough to use it. I feel the loss of my sweet baby's ability to move his arms and legs the way he was, rolling around on the floor, having to make sure everything is clean and picked up as not to have him putting things into his mouth that are dangerous for him. I miss him pulling his glasses off every two seconds. Cuddling him through the night because I can't now with all the machines. Having him sleep in my arms, they are already starting to feel empty. I miss the family pictures in the future... they are never going to be complete, they aren't complete already.

I miss him wanting~ needing his passy. His grasp of my face to give me a kiss. His beautiful smile, so vibrent and full of love. His body is getting so tired. He is a fighter, but it has been such a battle. But yet- I can not let him go. I can't stop fighting for him, crying out for a miracle for my little boy to be what he once was. And then it hits me like a slap in the face. I am thinking about myself. What must this entrapment be like for my son? Does he miss being able to talk? Does he hurt and can't tell anyone? Does he wish he could run and jump with his brothers? Does he want to grab on my face and plant a big sloppy wet kiss like he once did? Does he hear his Mommy crying and want to fix it? How must it be for him?.... And yet I cannot release him... I can't bear the hurt because of our separation.  I know the day is coming, for really we all are terminal, but it seems too soon, so much I want to do with him, show him, teach him and yet I will not be able to. I am SAD. Death has not lost its sting. But I will not stay in this place, for it is dark and ugly. I don't want to be here.
Its not fair. Its not fair that I can't have this time with my boy. That Stephen and Scottie don't get to keep their brother around. How are we supposed to share this with them? What do we say? Its not fair that they have to hurt like this, that they have to lose their brother. I don't want them to hurt but at the same time we don't tell them because I don't want their time with him to be jaded. To hold back anything. They need him just as bad as I do. As he does them. They have such a love for their brother. And Shaun for them. Forever brothers.
Then Jesus shares with me while I am in that terrible place, crying in frustration and agony of what will come on my kitchen floor, that Shaun is a gift. One that I have said, "Lord, I give him back to you to do with what you please." A gift that will keep giving long after he departs from this world. He was hand chosen for this mission. God said, "Who will do this?" and Shaun answered, "Here I am, Lord. I will go." When Shaun makes it to heaven, I can only imagine.... Jesus welcoming him with open arms saying, "Well done my good and faithful Servant. Great is your reward." And Shaun will be able to TALK, to RUN, to JUMP, to PLAY and to WATCH over us, waiting for us, and being in perfect peace with his Lord~ and his sister.
And my miracle that I spoke of earlier? Well that was reveled to me too. Shaun's miracle is his salvation; that he will not be in any more pain. That he will be in that perfect place in a glorified body that cannot hurt, get sick, be broken. His miracle is that he will be in heaven. I think in this realm. In this time. In this place. But in my heart, because of what I believe, that Jesus died, rose again and will return one day for all of us, this is my saving grace. That Shaun will have the ultimate healing, be in heaven~ what a wonderful place~ and this gives me a little peace. Enough to keep on going.
I know I will have more days like that one, more moments that I just don't know how I will keep on going, but I will. Until then, I will try to live Euchristeo~grace, thanksgiving, and joy~ finding 1000 gifts, looking for the good in the bad, lessons in the dark areas, grace in the moment and joy in the time we have. I will make memories- silly, fresh, fun memories- ones that I can hold onto, the boys can cling to. And I will continue to count the blessings.

A beautiful poem by a wonderful friend!

“Shaunie Baby,” “Shaunie Baby” What is more
By Ms. Né

“Shaunie Baby,” “Shaunie Baby” is what I call you
cause your name like that
sounds good to me

“Ms. Né,” or “Granné” is what they call me
cause a name like mine
sounds better what way

“Shaunie Baby,” “Shaunie Baby” how can it be
that you say so much
but haven’t spoken a word

What is more

You speak with your eyes
with a golden glow
melting hearts as they come and go

You speak from your soul
with a shining light
illuminating even my little toe

You speak in the silence of books
like the great green room
when you hear about a cow jumping over the moon

What is more

When “The Boys” play with the guys
you’re always the superhero
belting darts to and fro

One day you’ll love Scottie’s cereal bowl
with delicious milk a bright
floating cinnamon toast crunch in tow

One day you’ll love books Stephen writes
like the story of the sonic boom,
hurricane Sandy and the Batman cartoon

What is more

Your brothers, the Batman Duo Justice League pretended to be in disguise
and saved Berryville with a stick like an arrow
with super grappling hooks, batterings and a simple bow

One day you’ll play with “The Boys” on patrol
Or run really fast until out of sight
or slide down with your ski pole

One day maybe you’ll write your own book
and it won’t be about bloom and glume
it’ll be an adventure and how you conquered Your typhoon

What is more

“Shaunie Baby,” “Shaunie Baby” until then,
up high in the skies
an Angel flies fly by like a song sparrow
protecting you as you grow

You are perfect and whole
don’t give up the fight
everything will be alright, Jesus tells us so

He promises us all what our heart delights
He knew you before you were in your mother’s womb
"What is more," He promises to help you pilot Your balloon

“Shaunie Baby,” “Shaunie Baby” is what He calls you too
you can’t leave us yet
cause He’s not done with you

UVA again....

 Shaun was having a hard time keeping his sats up again... I called in the hospice nurse at request of our home nurse and she came, listened to him, heard that his lungs were full, watched how he was acting and determined he needed intervention or to be comfortable. I chose intervention especially since Peter was out of town.  We packed up all our stuff and headed to Loudoun ER because they have a pediatric ER. After a chest x-ray showing there was no pneumonia, they decided to call the on-call pulmonologist who said we had another choice to make. We could start Shaun on a rate (ventilator breathing for him) or come and get further testing. I didn't think he just needed a rate so I chose to make the trip again via ambulance to UVA. On the way down there, Shaun had a hard time breathing, so much so that he whipped himself around enough to pull out his trach. When this happened, gobs of goop, mucus or infection- not sure which, came pouring out of his trach site. It was mucus plugs that were the size of half dollars. He couldn't pass them through the trach and I couldn't suction them out. Once that happened he was a different kid! We got to UVA and they "observed" him for 2 days making sure he didn't have apnea needing to be on a rate and then we were sent home the same as we arrived! Praise the Lord!

Nurse Jennifer with Shaun

 Jim and Peter were in Mexico enjoying a "man-cation"on the company because Peter did an excellent job last year, so Becca and I decided to have our own "south of the border" party in the hospital. We were with our guys in spirit!

 Shaun really enjoyed Becca reading to him once he started feeling better

 I learned this trip that a special program, the 0-2 year old education program at UVA will be sequestered because it isn't protected by Special Education laws. The current law states that 2-21 will receive education. This is a travesty because this program has done so much for so many children. Chelsea, the teacher has been instrumental in helping me learn the best ways to engage and teach Shaun. He loves her! and so do I! Thank you, Chelsea, for all you do with Shaun.  Here is a letter I sent trying to change the minds of our officials and I  request if it is laid on your heart, send it in to anyone who will listen. If we flood their mailbox, they will have to listen.

Governor McDonnell, Senator Kane, Senator Warner, Attorney General Cuccinelli, Delegate May, Delegate Minchew:

I request your help and intervention to save a vital education program offered in Virginia hospitals. I was alarmed to learn this weekend, that a program my son and family depend on at UVA is being sequestered. A source told me education programs offered to ages 0 to 2 at hospitals across Virginia are being cut on July 1, 2013. There is no good reason for this cut. I hope you agree, all of our children deserve the best education we can offer them, even the special needs kids and especially those with special needs in hospitals.
These programs are more than an education program. These programs and teams of professionals help ease our children’s pain and suffering; help in their healing process; offer physical and mental therapy; help improve where there are developmental delays in speech and language; help with disabilities; and help prevent the need for other costly intervention in the future. Family members and supporting communities attending the program also become more aware of the gifts and abilities of their children and learn techniques to carry home.
Scientist, doctors, teachers and parents can show definitive proof that babies 0-2 years old undergo a whole range of physical, social and cognitive developments to acquire new motor skills and language abilities. Unfortunately, our special needs children spend most of their time in the hospital, so this is the only time for them to receive this training. I have seen the difference it makes in my son’s health and life, particularly before and after surgeries or painful procedures. These programs help make him stronger and more aware as well as happier and healthier.
It is crucial we keep offering education to babies and toddler at our hospitals. If these programs are allowed to discontinue, it is a clear act of age discrimination committed against our own children; and cutting these programs hurt our children. Please help us give a voice to babies who are too young to speak for themselves. Do the right thing. Protect the education programs in hospitals for 0-2 year olds now!
Respectfully request you to take a position to help the voiceless.

 Our girl slumber party!

Nurse Allison with Shaun

The nursing staff at UVA is wonderful. I have nothing but good things to say about most of these women. We usually get nurses that we have seen before and they love Shaun. Its great to know Shaun will receive such good care with people who love him if and when we have to go there. Thank you to all who help make such bad times a little better.

We are once again home and doing well. Thank you all for your prayers. Shaun's our little fighter!

Happy Easter!

 On Saturday, we were able to take Shaun to our annual Easter in the Park celebration where there are games, prizes, Egg grab, bounce houses and sunshine. We haven't been able to get out much but he tolerated about an hour before he was ready to go home. It was wonderful to be able to make these memories with the boys this year. I praise God that He conquered sin and death and we were able to celebrate it and teach our kids about it. HE HAS RISEN! INDEED!!

Bubbles with Brothers! at the
"wash you clean as snow" station.

Easter in the Park 2013

Shaun even got some eggs to get a "Prize!"