Our last month looked something like this.
We traveled to DC for a meeting with speech pathologists from three different areas to attempt to find ways to help Addison swallow in an effort to avoid a feeding tube.
While we were on "vacation" Addison came down with the flu. Which developed into croup. Which landed us in a hospital in Georgia. And, when combined with his hypotonia and tiny airways, caused him to spontaneously stop breathing many, many times over the course of two weeks. When he turned blue from lack of oxygen, we took turns standing in steam showers with him and laying awake at night monitoring his breathing.
As a result of the flu, he has lost nine months of hard work at eating and swallowing. Oh, and during the same time I was in bed with the flu for a week, Allen hurt his back and our two youngest girls came down with fevers and vomiting so severe the doctors wanted to hospitalize Elisabeth.
We had to stay in Georgia for a week past our return date until everyone was well enough to travel home. After a 12 hour drive we finally returned home on a Thursday night to feed the kids, unpack and fall into bed after midnight before we were on the road to children's hospital in DC at 6:00 the next morning. All this so Addison could spend the day hooked up to an EEG to determine whether or not he was having a relapse of Hypsarrhythmia... which is a chaotic brain wave responsible for a devastating seizure disorder he underwent this summer.
Three days later we returned for a night at Children's hospital in DC where he had a sleep study to confirm the diagnosis of sleep apnea and determine the degree of his issues. Which boiled down to a night of no sleep for anyone. And, although the tests have not been fully evaluated, I have to wonder if we got any measurable information.
Next up was a three day trip to Connecticut so Addison could have additional mouth surgery in an effort to improve his swallowing. Except, when we got there for his pre-op evaluation we were told several things. 1-Addison still has not fully recovered from the croup. 2- He has developed a mouth infection that both his ENT in Connecticut and in DC feel he picked up at the hospital in Georgia 3- both the tubes which make it possible for him to hear are now non functioning as a result of the flu. In an effort to try to get the one tube clear his ear was injured, leaving it inflamed and bleeding. So we added an oral antibiotic for the mouth and a topical antibiotic in the ear.
Our two older boys underwent surgery as planned and we made the trip home last night. I haven't washed my hair in five days. But first thing this morning we were back out the door headed to children's hospital to see the ENT who cares for Addison's ears. He quickly informed us Addison will have to undergo surgery to have tubes reinserted. The good news in this is that he and the ENT who oversees Addison's mouth have coordinated so that both procedures can be done when we travel to Connecticut on May 5th and 6th for the rescheduled mouth surgery.
Oh and while I was in post op with the boys I got a text informing me Brianna had taken Allen to the hospital in the middle of the night.
It's not an easy life. Yet, we run the race. Because we want to help Addison be everything he can be and reach the potential God has for his life. We do it because we believe he can do it. We believe he will do many great things in and for this world. We believe God has a plan for this little big guy.
But still... If Addison never accomplishes one thing more than what he has today, it is worth every effort. His life is still valuable and amazing. His life is worth every minute... every trial... every struggle... every dollar.... every tear. If, for no other reason, and there are lots of other reasons, then because every tear we shed is matched by ten times the amount of joy he brings to this world. And lest you think it is just because I am his mama, not a week passes that someone doesn't text or email to tell me they need to see Addison because life is getting them down. He has some amazing ability to just make you feel all the goodness that is otherwise lost in this world. It is like his super power or something. He can't talk... he can't walk... he can't even eat... but his mere existence has a way of bringing a smile and complete peace to anyone in his presence.
And yet... There is a whole world out there that believes his life is not worth the extra effort to help him succeed. As a matter of fact the majority of the world believes abortion is the only option when your child has been diagnosed with down syndrome. And, in fact, there is a huge push for "better" prenatal testing so that no one accidentally should be burdened by a child born with down syndrome. And any parent who should bring a child with down syndrome into this world is irresponsible and worse than an infidel.
Just today I read an article by Marguerite Reardon of CBS News. She shared how she came to terms with her daughter's diagnosis of Down Syndrome and how grateful she is she didn't choose abortion. In response the majority of readers wrote in about how wrong she was for bringing a defective child into this world who would never do anything valuable with their life and instead would be a burden on their parents, siblings and society. One particularly eloquent writer said:
" I think it is wonderful to live in an age, in a country, that allows women (couples) to test for genetic defects and choose whether to abort a defective fetus or to choose to devote the rest of their lives to the product of that fetus. A child that if lucky will grow up and maybe live independently for 10 or 20 years after reaching adulthood and then die prematurely.
Those who choose to abort, usually go on to have several children. Whereas, having a child with Down Syndrome pretty much ends reproduction. Even Sarah Palin quit having kids after Trig (DS) was born."
Last year we chose to take part in the first annual Race 4 Respect because we wanted the world to meet Addison and to know there is another side to a down syndrome diagnosis. We want the world to see people with down syndrome and realize they are a valuable part of society who make priceless contributions to the lives they are part of. And what better place to do that than in our nation's capital?
In 2014 we entered into this race when Addison was healthy and developmentally on target with his peers who do not have down syndrome. We chose to run because it represents many of the challenges Addison faces every day. Running is physically and emotionally taxing. To gain endurance it requires discipline and time. When we run we are reminded nothing comes easy for Addison. He has fought for every milestone he has achieved and will struggle for the rest of his life. Yet he continues to endure, to move forward and to inspire all he comes in contact with.
Before Addison was born I claimed Isaiah 40:31 "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
This last year has been beyond anything I could ever have imagined. Our plate is overflowing. My strength needs renewing. I was not certain we had the time or resources to take part in this race. However, because there are people out there who still think Addison, his family and the world would be better off if he were dead, we will be out there standing up for our boy.
We hope to build a team of 21 people dedicated to helping Addison overcome his challenges to reach his greatest potential and individuals committed to showing the world people with down syndrome deserve to live. They deserve the same choices and opportunities as every other person. They deserve respect.
The Race4Respect™, presented by KOONS of Silver Spring, is a 5K Adult and 1K Kids Dash in Washington, DC. Join us on Saturday, May 30, 2015, for the second annual Race4Respect™, one of the most coveted 5K courses in the DC metro area! Run in the shadow of the nation's capital, the Washington Monument and many other DC treasures. The Race4Respect™ is a collaborative project led by devenio, inc. and eight Down syndrome affiliate groups in the DC metro area and surrounding regions including Frederick, Baltimore, Annapolis, Southern Maryland and Richmond.
The mission of Race4Respect™ is to build community partnerships with the goal of increasing Down syndrome awareness. We believe that if given the chance to experience an event with a person with Down syndrome negative stereotypes, barriers and judgments can be overcome.
Walkers and buggies welcome as well.
Click here for more details.
To join Henry's team,
1. Visit the Race4Respect website
2. Click on the register button
3. Select "Join an Existing Team"
4. Choose Re:Henry - We are INTREPID