I Am Back, With A Vengeance

I have, in my darkest hours (& there have been several these past two weeks) prayed for grace, strength and clarity. None of it seemed to come my way. The reality of our situation and the heaviness of the work we are doing caught up with me. The honeymoon was over. I have wanted to run away from it all. I have cursed my circumstances more than I care to admit & I feel ashamed. My well was running dry & I feared I had nothing left to give.

Our already intense situation was compiled with an unexpected wrist surgery for me, Hayden coming down with strep so intense that it set him into severe processing every day & set our treatment back approximately three weeks. We have also been dealing with an abhorrent bullying situation at school that has put my son into a very fragile and timid state. For anyone who knows Hayden that is completely opposite of his charming, outgoing, confident ways. My middle daughter has been feigning stomaches to get attention (I don't blame that sweet angel).

So many balls in the air and too much for this mama to juggle alone. Everything came crashing down and I felt utterly helpless, scared and defeated. Going home seemed like the only option.

Until yesterday afternoon when something shifted in me & the fierce, unstoppable Amanda that I have relied on all my life was back ~ and with a vengeance. I owe it to my children to pick myself up by my boot straps and get back in the saddle. And that is exactly what I have done.

I refuse to let our situation & the stress that is inherent in this type of process get in the way of our goal. Healing Hayden and nurturing all my kiddos and their unique needs along the way is what I must stay focused on. They are counting on me & I will not let my babies down.

Our energy healer says that sometimes this treatment, like anything in life, must sometimes go backwards a few steps to grow and then move forward. That has been very true for me this past week as well. I have stumbled and gone to places of barely recognizing myself. But all that really matters is not only that I came back (as his treatment is starting too) but I came back with a strength deeper and more anchored than before. And if falling into a desperate place is what it took than I am grateful for the opportunity to have fallen.

Amanda

"Let me not pray to be sheltered from dangers, but to be fearless in facing them. Let me not beg for the stilling of my pain, but for the heart to conquer it." Rabindranath Tagore

Too Weary For Words Today

8 Months and Counting

We have officially started our countdown ~ 8 months & we head back to Colorado! Home to all our comforts. Our house, our wonderful friends, our amazing community, our neighborhood school, the beautiful mountains that I see every night in my dreams. I can't wait to have good hair again, this humidity is killing my tresses. I miss the near constant sunshine, the happy, positive people. The wide open spaces and next to no traffic are things I will never again take for granted.

I have been tentative to talk timelines with the kids until recently. My sweet husband and I have decided that regardless of where we are in the treatment, come June 24th (end of the school year) we head home. I talked to our good dr. about this and with treatments twice per week, she feels quite confident that we will be almost finished. Almost being the operative word. So I have asked her in an effort to make completion more realistic can we move a bit quicker on upping the values. We are proceeding faster than before and I pray it does not backfire on us, so far so good.

Just knowing there is a light at the end of this tunnel makes the daily task at hand more bearable. We are also planning a family cruise to celebrate all the hard work that happened while we were here. When asked how he wanted to celebrate Hayden exclaimed, "A cruise, with all kinds of food that I can have!" And so we muscle through each day knowing the benefits will last a lifetime.

Amanda

"People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can't find them, make them." ~G.B. Shaw

My Littlest One Gave Me the Greatest Gift

My sweet Maggie who is three weeks shy of turning four continues to be a source of continual inspiration for me. But today was different. Today I really got it... the message that God wanted me to get... the one I had been missing for way too long because I was so busy trying to get her "caught up."

Maggie has a profound hearing loss and has been wearing hearing aides for six months now. Up until her diagnosis I had her in speech therapy twice per week and worked endlessly with her. At age two her hearing tests came back fine and I assured myself that if I worked even more with her she would be okay. Maybe the 9.5 months of only hearing Spanish in Guatemala really was affecting her more than I realized. Maybe she was strong willed and did not want to talk. Maybe the rest of the family did all the talking for her, so she remained quiet. When my two-year-old was not speaking, I made every excuse and believed that in due time she would start talking & never stop. But sadly that never happened.

A few months after Maggie turned three I contacted Children's Hospital in Denver and insisted that her hearing be tested again. This time they did an ABR (Auditory Brain Stem Response) and the results were overwhelming. Maggie is approximately 70% deaf. I wept when I heard those words. A mixture of relief, fear and sadness. I wondered how I would handle this for all her years to come. I questioned if she had ever really heard my voice and the endless, "I love you" that I whispered to her every night. While I was receiving this news she was still in recovery and in my arms. As I cried, my sweet angel wiped my tears and I vowed in that moment to be strong & to be the advocate she needed me to be, nothing less, not for a minute.

I wish I could say that I was always true to that promise. There have been days of frustration, days where it felt like she would never form a two word sentence. Days where her frustration in trying to communicate has led to temper tantrums. I have watched her try to befriend other children to only be shunned because she could not communicate. My heart has been broken more times than I ever thought I could bear. That pain has kept me going in my refusal to let her receive adequate services. My Maggie deserves the best from a preschool and I was determined she would get it (and then some)!

After many appointments here in Boston, with the world renowned Mass Eye & Ear we know that for the time being her hearing is not degenerating. She is also on an IEP at a phenomenal school where she is on an FM system all day and is pulled out of the classroom four times per week to receive special services with speech therapy and to work with a teacher for the hard of hearing who teaches Maggie how to hear & listen. Another blessing for us during our time here in Massachusetts.

All in due time I tell myself. We will get there. But today there was a moment~ a moment in which all my worries faded away~ a moment where Maggie made me realize that today is all that matters, limited language and all, just love and accept me right here mama, today. It was a moment that sounded something like this. As I was driving and approaching a green light Maggie said, "Green, go mom." As I turned she clapped her chubby little hands and said "Nice job mom."

A moment that taught me to relish her innocence and her "baby talk" and all the joy she lives her life with. Several times a day she will hear a bird chirping, a distant siren or a school bell and she will touch her ears and ask, "Hear that?"

I vow to slow down and hear it all.

Amanda

"I have always thought it would be a blessing if each person could be blind and deaf for a few days during his early adult life. Darkness would make him appreciate sight; silence would teach him the joys of sound." ~ Helen Keller

Fake It Til You Make It

I am literally shaking as I type this, but I am trying to remain as "calm & normal" as possible while Hayden sits nearby & I keep an eye on him. Any attempts to pick up the phone and get support from family and friends would cause him more concern. So I sit here and fake calmness.

My kids have 1/2 days on Thursdays, so as soon as we got home I gave Hayden his daily wheat dose, which has been steadily increasing. We were targeted to be at a full serving in 3 weeks & we have been counting down the days ~ until now that is. :(

We have a scale that tracks any processing Hayden may be feeling. It's a simple 1-10 kind of a thing. 1 means slight itching or tingling & 10 is I am having trouble breathing. It gives me a really good basis as to how to proceed & helps our good Dr determine if he can move up in his dosing. To this point we have had 3 processing issues, once at 3, once at 4 & once at 9. All have been quickly resolved with acupressure "tapping", repeating of his mantra & 1 Alka Seltzer Gold dissolved in 4 oz of water.

But today was the most dramatic processing I have seen & it shook me to my core, but I dare not let him know as I do not want my fear or negative energy to be projected onto him, as this can really effect the process from here on out. So I smile and nod right now & even hum a stupid tune to let him think I am calm.

Moments after giving him the wheat he returned to the kitchen and said "Mom, I'm at a 4, actually a 5." I respond, "Oh, that's ok, let's do our tapping and take an Alka Seltzer Gold, this is just your body processing through the wheat." "Mom, I do not feel well, I'm at a 7 now." Trying not to break down, I say in my calmest, fakest voice I can muster, "No worries, you are just fine, finish your Alka Seltzer." "Mom I can't swallow it, we need to go to the hospital." At this point I am grabbing for the epi-pen in the calmest way I know how & taking the cap off at which time Ava comes in the room screaming "OMG, are we going to the hospital is Hayden having trouble breathing?" You can imagine the fear this instills in all of us. Hayden literally starts to tremble and whimper & I say firmly you either finish that Alka Seltzer or I have to epi-pen you right now. I have never seen him chug anything so fast. As God is my witness, 20 seconds pass and he looks at me and starts to smile & says, "I'm at a 1 mom, I'm going to be okay." & I say in my fake calm voice, "Of course you are going to be sweetie. Let's do some more mantra and tapping." I proceed to say the mantra in a near whisper while I rub his back & he does his tapping. Minutes later he wants to know if we are having lunch anytime soon, because he is starving. Are you kidding me? :)))))

This is such a roller coaster of emotions. And to top it all off our Dr is away for several days.

Trying to time these dosings is the trickiest part of all this for me. Now we are off to guitar lessons and I will smile and act like we are a "normal" family having a "normal" Thursday afternoon. Maybe if I fake it a few more hours I will actually believe we are a normal family!

Amanda

Determination Is The Name Of My Game

My kiddos are back in school, but an unimaginable chain of events have occurred for us over here. Day two of school I get a school-wide e-mail that states PCB levels, above EPA standards have been found in the school and there is concern over the threat these levels may impose. OMG!!!!!!!!!!!!! Is this some kind of bad science fiction joke? My heart started racing as I googled PCB ~ and the more I read the more I knew what I had to do. I went to the town hall meeting that evening to advocate for all of the children at the school. I even got up and spoke, but very quickly it became all too clear that only one person could truly protect my children & only one person really had any vested interest in their long-term health, me.

For sake of an extremely detailed story I will summarize by saying that my bad-ass self, who never accepts no for an answer, got my kids a "medical" transfer to another Lexington elementary school. It took days of persistence that I truly did not know I had. If the medical transfer had not been approved I was looking at moving to another townhouse on the other side of town or staying here and homeschooling. Neither task would have been ideal given our already taxed situation, but I stood firm that we would make this work. I cried so much in the days that led up to getting the green light on the transfer, wondering how much more one very weary mama could handle.

I got an e-mail on Friday from my kiddos new school that stated they had been awarded a Blue Ribbon Award of Excellence, such an honor, as only 308 schools in the nation were picked! Yes, everything does happen for a reason and my kids are settling in just beautifully. Ava, my second grader, told me yesterday that she loves her new group of friends & she loves being the only white girl in that group!! The cultural lessons have been profound and for sake of confidentiality I feel it best not to share the details. Hayden, my 4th grader, has met a few fellow hockey players but is especially enjoying the new friendship of a girl in his class who seems to bring him unending happiness. It is really fabulous to see two kids of the opposite sex, at this age, who have NOT been childhood playmates kindle a friendship and support each other. She is always asking about his allergy treatments and cheering him on & he is trying to figure out how to best support her through her parents divorce. The life lessons we are working through humble me as I try to find the right words to help my children understand these delicate situations.

My husband came out and spent several days with us last week & we are both in 100% agreement that our marriage has NEVER been this firmly planted. I am endlessly grateful to have him as my life partner. Saying goodbye to him is becoming more difficult for all of us, but this time it was Hayden who took goodbye very hard. Maybe it is because he so desperately needs his father around with all the estrogen he has to deal with every day (me, Ava & Maggie)! Hayden announced that dad should just stay with us until July "...afterall who needs more money when we have eachother, please mom & dad?" If only it was that easy little man. So until Bryan's return I will balance roles of mom & dad, especially as hockey season has begun. I must say the locker room situation is getting a bit awkward now, with me being the only mom in there tying skates, but like all the other kids Hayden wants his parent to do his too. And where I go, so do my girls, who cannot be left unsupervised, so we have become Hayden's entourage in the locker room! What's a mom to do?

On the allergy front we are rocking and rolling right along! Hayden has daily doses of egg, dairy, wheat, & sesame. Every time he turns around I am putting more food in front of him, it's wildly fantastic to watch him enjoy foods he has never experienced. I wonder if I will ever tire of this? I intend to post pictures this week of our food celebrations & milestones!

Amanda

"There is no chance, no destiny, no fate, that can circumvent or hinder or control the firm resolve of a determined soul." - Ella Wheeler Wilcox

We Belong In Italy

Life has been nothing short of a circus side show over here. All I know is that school starts in two days and I will breathe a bit differently in the hours I have to myself. I am in such desperate need of quiet time and privacy. I may decide to sit on the toilet the entire first day, with the door open, just because I can.

In the three months we have been living here I have come to the definitive conclusion we are a really LOUD family. You can't miss us when we enter the grocery store, shopping mall, park, car wash, etc. We are the family who all talks at once, has very strong opinions and is persistent about getting an answer. And never mind the fact that my 3.5 year-old is severely hearing impaired, wears hearing aides and practically screams when she speaks (bless her little heart). We had to take my dog to the vet the other day and I had the sudden feeling we were being peered at from behind magazines as all the patrons watched our chaos.

We should really live in Italy where loud is the norm, talking with your hands is equivalent to moving your mouth and being fiercely passionate is the only way to exist. This is not a justification for our behavior rather an answer to where we seem to fit. A trip to Italy was not even in the cards with Hayden's allergies, but as he continues to eat more wheat every day, we know a trip to Rome and Venice is not that far out of reach!

Our good Dr. believes in rewarding the kids she sees with big prizes when they complete a food they were previously allergic to. Soooooooo, since we are entering the "maintenance phase" of egg he got his first prize today, a PSP3! What a victory ~ A celebration that seemed so far out of reach, but here we are, after only 12 weeks of hard work!

Hayden continues to eat dairy and wheat daily, albeit very small amounts. The good news is we have had minimal "processing" and are increasing his doses every 24 hours. Dairy is typically the toughest one to work through and will take the bulk of our time here. Wheat however should be just a few more months. We start sesame this week as well. Whew, that's a lot going on for one little person, but he smiles for each serving and we celebrate the daily milestones. His sister Ava is truly the most compassionate, loving, cheerleader of a sister who has brought abundant sunshine to this entire process. She has not once questioned this move or all the sacrifice we have endured to be here, she simply smiles and hugs him with a joy & purity that is indescribable.

We thank God for this constant blessing of healing and for the love and support from all our family and friends. We are blessed beyond measure.

Amanda