Another lesson learned during my journey with Sam is to never judge...to never look at another human being and their circumstances and think I could do it better...because I have been on the receiving end of that type of judgement. When I chose to utilize a program like NACD...I had skeptics and those who spoke out on my wasting money to help a child that had no future (after all Sam had both Down syndrome and a brain injury). When my child acted out and I chose to see that as a form of communication instead of just bad behavior I had those that doubted my findings. When I chose to speak and mimic my child's attempts and beginning sounds of communication in an attempt to pull out more sounds and beginning speech I got more than a few strange looks. When I decided to homeschool Sam I also had a lot of critics from both those with and without a child with Down syndrome, we fight for inclusion and I was choosing not to include my child. When I traveled to Baltimore to receive further orthopedic expertise than that available at our Children's Hospital I had naysayers in the medical community and others who felt the treatment was too extreme for a child with multiple special needs. Researching and choosing to use alternate methods of medical care for Sam has caused people to question my intentions. Soooo...I pray a lot...and I follow my gut and I do what I feel is right for my child.
Through our numerous medical emergencies I have learned a self-imposed calmness. Sam watches me, Sam learns from me, Sam looks to me for guidance in every situation. My actions speak so much louder than words. The families that follow my blog that have a child with Autism can probably directly relate to this. When we are in a medical emergency, I try to get Sam to focus on only me and what I am saying. I speak in quiet, calm tones and my body language is calm and reassuring. My voice is monotone and my expression is calm confidence. It takes only a second for Sam to see me tense up before he begins to do the same, if I escalate he escalates more, if I cry or raise my voice he becomes upset, frustrated and will no longer cooperate. So much of any situation with Sam is a direct reflection of my own words, actions and body language.
Now I don't want you to think for even a moment...that I'm perfect at implementing each of these lessons. I prefer to think of myself as a work in progress. Even when my actions are acceptable...my thoughts still want to fight accepting the lessons learned...I am after all human. I like to think of this process of coming to terms with my lessons learned as a shaping or development toward the person God would like me to become. Of course...lately...I think he's been hammering the heck out of me and my most recent couple of weeks seems to be following suit.
Right before Sam and I left for Baltimore my 16 year old daughter went to her first day of school and then ended up in the ER that night being diagnosed with Mono and a bladder infection. Not the best start for her junior year of high school. I picked up her prescription, took care of her for the first couple of days she was home but then had to leave for Sam's check up in Baltimore.
I packed up my suitcase, notified the school and made arrangements, went over everything with Jeff and my sister in law, assured Danielle I was just a text or phone call away and headed to the airport. Travelling with Sam is always an adventure. Picture me at the airport, getting out of the car and grabbing my airplane backpack which includes the must haves (fully charged IPad, gluten free snacks, Sam's medical/therapy reports, Sam's inhaler and respiratory meds, Sam's stress ball, Sam's sweatshirt and I throw in a snack for me, my sweatshirt and a magazine). I open the trunk and pull out Sam's wheelchair, walker and our suit case. Over the years I have learned how to become a pack mule. I throw the back pack on, pull the suitcase on wheels handle up, slip the walker over the handle and proceed to push Sam through the airport with one hand while pulling the suitcase/walker combo with the other. After maneuvering our caravan on/off elevators and around various obstacles we arrive at the check in area. Sam begins a meet/greet with the attendant and I place our suitcase on the scale...keeping in mind Sam's need to push things standing up over I quickly face him in the opposite direction and get our boarding passes. One less item allows me to now push the wheelchair with both hands while hanging on to the walker with my thumbs. The entire time we are walking through the airport Sam is smiling and greeting every person we pass "Hello Lady" "Hello Man" "Hello Boy" "Hello Girl" "Aww Cute Baby" and I smile and greet them also.
We arrive at Security and if it is a good day we are ushered to the shortest line. I have to remove Sam's shoes, my own, unpack the IPad, place the backpack in a bin and then with a smile push Sam toward the attendants explaining that he can not walk through on his own. This gets me the "deer in the headlight" look. Extra security is called in and Sam is pushed to a different area after I reassure him that I am right behind him. I smile as I walk through and collect our items and join Sam in the secure area. After Security determines their protocol I help to walk Sam through the additional scanning, potential pat down and surrender his wheelchair and walker for additional security checks. The Milwaukee airport is fairly easy to get through, not so at our destination airport of Washington DC. I'm not going to tell you that I don't dread getting Sam through security because I never know what the protocol will be or what they will expect of Sam. I am a firm believer in making sure that our air travel in this country is safe so I choose to smile and cooperate in an effort to help Sam do the same.
Once we are through security I need to make sure that Sam's walker and wheelchair are gate checked and have the proper tags and then we settle in to wait for our airplane and our next potential challenge. Every airline's boarding policies are different...after both good and bad experiences...I now have only one boarding policy. Sam will board first, before 1st class, not at our designated time as referenced by our zone and not when someone else decides it would be a good time. Been there...done that. Sam's ability to walk unassisted is limited and when he is moving, stopping really isn't an option unless it includes sitting. I have had first class passengers block the aisle as we are boarding, I have had people place their bags in the aisle blocking Sam from his seat, I have had people's feet and various body parts causing hazards for my child who's only focus is to get to his seat and sit to relieve the pain. I have had people judge my child as rude because he has pushed them out of the way or asked them very loudly to "MOVE". If that person had the pain and discomfort Sam experiences when walking without assistance I think those two actions would be the least of their worries. Sam when seated is a wonderful traveler.
We had a "It's a small world" moment when at the Washington DC airport I began talking to a young girl who just happened to be the niece of a dear friend who also has a wonderful young son with Down syndrome. We also had a few "kindness of strangers" moments when I met a woman on the car rental bus who really enjoyed meeting Sam and a man that was kind enough to help me load and unload Sam and all of our items to get to our car rental.
I had explained to Sam numerous times where we were headed and why...and yet in Sam's single track mind...he had decided we were going to Florida. You can imagine his dismay when we arrived in Washington DC and there were no palm trees. In order to help alleviate Sam's anxiety about why he is coming to Baltimore I planned some fun events around our stay. When we arrived we met up with Jeff's cousin Shelly and her two children for a fun time at the Aquarium. Now usually...the Aquarium would be a hit with Sam but I did mention Sam's one track mind...he was still a little angry that we were not in Florida. Sam would push away from the exhibits and after several attempts to correct his behavior I could tell he was digging in his heels so I begin to model correct behavior and ignore his attempts to escalate. I found the perfect spot for Sam behind a concrete pillar, he pushed back and could go no further, being a smart child he quickly realized his strategies were useless and he actually began to look at the fish, sharks, and sting rays swimming in front of him. We then went to see the dolphin show and Sam seemed to enjoy many parts of it but he didn't really lighten up until we got to the restaurant and then he sort of got delirious. The real Sam made an appearance when we left the restaurant and stopped to watch a street performer. He was interested, engaged and enjoying the show.
We then headed to the Hackerman Patz House which is where we stay in Baltimore, right across from Sinai Hospital. We had a beautiful large room and Sam and I were happy to settle in for the night. It is a beautiful home away from home and we adore seeing Amy who is the fountain of knowledge on where to eat, what to see, and how to get to places.
After getting Sam up and showered, dressed and completing our stretches and exercises we headed over to the hospital for breakfast. After breakfast we made our way to our appointment in the orthopedic wing. Our appointment was at 11:00 and we arrived at 10:55 as instructed. We first heard that Dr. Standard was going to be late and our appt. would be delayed an hour or two. Fifteen minutes later we heard that Dr. Standard would not be coming in at all. My first reaction was to say "but we flew from Wisconsin to see him" and then I remembered how I often wondered what happened when a high profile doctor had a family emergency. We learned Dr. Standard's wife had their baby on Saturday morning, one week early and the reinforcements (also known as the in-laws) had not arrived yet. On top of that one of his other children was spiking a high fever and needed to go to the pediatrician. Being a Doctor had to wait because being a Dad should always come first. Soooo....we were disappointed but if there is anyone that understands "life happens"...it's me. Sam would have his x-ray and we would see Chris, Dr. Standard's PA. Sam felt the need to yell a little before getting on the x-ray table but once he got on and figured out it had a soft pad he pretty much settled in. The x-ray was completed and we returned to the waiting room. And we waited and waited and waited and finally got called into a room where we waited some more. I could see the stress Dr. Standard's absence caused on his staff from Anne, to Marilyn, to his nurse and I was only guessing the stress Chris was now experiencing so Sam and I prayed for Dr. Standard and his family, for the staff, for the parents who's disappointment would be greater than ours and for patience, guidance and understanding for us all. I began to find a blessing...Sam was calm, Sam was okay with waiting and Sam was patient...not typically the words I would use to describe Sam Mayer and especially while in a medical facility. I strived to reflect his example...also not easy for my "A type" personality. At 3:00 p.m. Chris finally came into our room looking tired, a little frazzled but with a smile on his face. During the time we waited I had ample opportunity to write out my questions, our current situation and the concerns of Sam's therapists.
When we started the journey with Dr. Standard and I heard from other parents about their child's results after treatment I began to have hope again. When I met Becca and her family, especially her Mom Marge, they helped me come to the decision to go forward...that glimmer of hope grew. My analytical side knew that Sam's Perthes was in a late stage, that much damage had been done due to over 100% collapse and that his situation was unique...but I also believe in miracles. I needed all of that to get through the external fixator process along with my faith in God.
I wanted to come on my blog and write how Sam was that miracle story, how Sam defied the odds and is now fully mobile and the effect of Perthes is no longer a problem in his life. But that is not what I am here to do. And yet again, I have a choice to see the blessings or to be....miserable. We are definitely in a better place than when we started with Dr. Standard. Prior to the external fixator Sam could not move, he couldn't get out of bed without narcotic pain medication. His first surgery had done an excellent job in keeping his hip contained but he still had significant pain, zero mobility and a daily regimen of narcotic pain medication and muscle relaxers.
Now Sam is able to walk throughout the house with his walker and sometimes unassisted. He has regained the independence of being able to get his computer, food and use the bathroom without assistance. For my friends of children whom are wheel chair bound they can vouch for the simple blessing of movement...being able to transfer, any type of walking with or without aid, re-gaining independence and the freedom that comes with the ability to move. Sam's movement is completely without the use of any type of pain medication. We are blessed!!
Sam's unassisted walk is in one word...ugly. His hip is hiked up as he walks on his tiptoe on the left side, the limp is severe and he seems often times in pain. We also hear at times a very loud audible click coming from the left hip. Here is a video for his home program to assess his gait.
No he's not walking everywhere, running, jumping and working on his next triathlon. No our story is not going to have that perfect ending...unless God steps in and miraculously heals Sam's hip. Luckily for me...I believe in miracles. Sam may improve his gait over time but he will continue to have a physical disability. The external fixator helped but will not completely alleviate the effect of Perthes. Sam will continue to need a walker, Sam will continue to need a wheelchair and sometime in the future Sam will need either a hip fusion or hip replacement. It is a matter of time and how long it takes the hip to break down or become too painful again. This surgery bought us more time before the next one is required. More time to travel on a family vacation, more time to go on homeschool field trips, more time to work on moving Sam along in his academic goals, more time to wake up and enjoy each and every pain free day...as much as we possibly can. Sam will probably not regain 100% of his mobility, Sam will not run, skip and jump like other 12 year olds. But with all that said...I am still thankful for Dr. Standard and his promise to see things through...I am thankful for Sam's ability to transfer and walk with the walker...I am thankful for the new little bundle of joy that may have changed our appointment but will bless the Standard's lives...I am thankful that Sam's pain has been reduced and he can swim with ease again...I am thankful for more smiles and less tears...and...I...am...thankful...for...more...time!
When we left our marathon appointment of 4 hours I was at peace, calm and looking forward to what that time...time without surgery, time without rehab, time without narcotic pain medication...would allow us to do. So the next day we got started. We headed to another National Park in our quest to visit them all. This time we drove to Great Falls National Park in Virginia. Record heat in the area was going to make our visit short and sweet but we would see the Great Falls of the Potomac River. I knew right away we made a good decision when the Park Ranger allowed us to enter for free just by mentioning Sam's National Park Pass. Yep, another blessing!!
Thankfully the overlooks were very easy to get to because pushing Sam in 97 degree weather is never a lot of fun. Out of the 3 overlooks I was thrilled to see that 2 of them were handicap accessible.
The first overlook gave us a beautiful view of the rapids and if you know Sam...you know he loves anything that resembles a waterfall.
The view the other direction was just as beautiful. A nice time to stop and thank God for our safe travels.
The second outlook had this wonderful plexi-glass viewing area for small children or people who use a wheelchair. Sam was mesmerized.
Sam had a great time watching the kayaker works his way through the rapids.
The kayak was going upstream...hmmm...facing his challenges, seemed to fit our theme???
I love taking Sam to the National Parks because it seems to give him peace, thoughtful reflection and always, always a time to enjoy the natural beauty that God created all around us. We also enjoyed driving the Georgetown Scenic Byway.
Due to the heat we decided to take our next activity inside. Ahhhh...air conditioning another blessing...both to cool us off and since my husband owns a heating and air conditioning business...allow us to take this wonderful trip. We decided to head to the movies for some relaxation, A/C, popcorn, soda and hopefully a great movie. We drove to Hunt Valley upon Amy's recommendation. I explained to Amy that I'm a country girl, live in a rural area and only have one major highway near us. I wanted to go somewhere away from the city where I could park in a parking lot instead of a parking garage and I wouldn't get lost or end up going the wrong way down a one way. I'm pretty sure if you live on the East Coast you have to love highways, expressways...and a lot of them...all seemingly going to some place more crowded. Anywho we arrived at the theater and chuckled that we were the only ones in our theater. We decided to sit in the middle to enjoy all the space.
Because I normally fly by the seat of my pants, I didn't really plan on a particular time to arrive. We ended up being in the theater 45 minutes before the movie was to start. Popcorn, soda and A/C...not a problem...much better than our last wait which didn't provide us with any food or beverage. We enjoyed the peace and quiet and waited for the movie Planes to begin. Now remember we are in a movie theater at 4:00 on a school day for a PG movie...yep no one came to join us.
Sam enjoyed being the popcorn bully, offering me a piece or two at a time. When I asked for the bucket I was allowed to take one handful before he requested it back.
However when the movie was supposed to start and we still had this on our screen I had to go to the lobby and ask them to turn the movie on. They forgot that there was anyone in the theater. Once the movie got started Sam loved it.
The heat remained a factor the next day and Danielle was not feeling very good so I decided to try to take an earlier flight home. When I called Southwest they told me we could get on the 2:00 p.m. flight so we headed to the airport. We dropped off the car and we were thrilled that Budget drove us right to our ticket counter. The thrill ended when the Southwest agent informed me that to change our tickets would be a $400.00 upcharge. Deep breath...I kindly declined since both tickets didn't cost me that much and we decided to wait at the airport (since our rental car was now turned in) until our original flight out at 5:00 p.m. Yep that is 5 hours in the airport. Oh joy!! It was too early to check in our bag so we moved over to the seating area and I noticed a huge amount of security and then it hit me. I was flying out of Washington DC on 9/11...what was I thinking???? These were not your normal police officers...they looked you up and down from head to toe and they wanted you to know that they were looking at you. Of course Sam thought it would be a great time to do some meet and greets which I quickly discouraged but a few couldn't help but smile at him anyway. 1:00 o'clock came around and we were able to check in our bag and now we were off to security. I have mentioned how much I look forward to getting Sam through security and the fact that we were detained for 1 1/2 hours the last time we tried to fly out of Washington DC, haven't I???
As we headed to security the guard was kind enough to usher us over to the business traveler/employee line because it was shorter. I smiled and thanked him and thought "you may regret that move in the near future". I removed Sam and my shoes, pulled his IPad out, put the back pack in the bin and made it to the walk through scanner. They asked me "Is he able to walk unassisted" I said "No", they asked me to walk through and then the security guard decided to bypass my answer and ask Sam to get up and walk through....as if he would listen to her and just walk through. I tapped her on the shoulder and said "He's not going to come to you, he doesn't know you or trust you". She responded "Well, she can walk through to you". I got stuck on the reference to "she"...honestly what part of looking at Sam makes you feel he's a girl??? I said he will probably grab the side to steady himself, she said "Well, then she will alarm". Again "she"???? Sam stood after a few very loud audible "NO's", now just picture that I am trying to get a child that struggles with auditory directions to stand and walk on an uneven surface while every one in the area turns and stares. Yep, anxiety was hitting Sam and me big time. Sam stood and grabbed on to the side (like I said he would) alarmed and the security guard finally decided we needed to go into the other area of security which is where I wanted to go right away...but what do I know. A second security guard began to push Sam's wheelchair and as Sam was beginning to object I stepped in, got down to Sam's level and explained that I am right behind him, getting our stuff and the security guard will wait for me. Sometimes you just have to make instructions clear to both parties. I gathered our stuff and followed the security guard to the other personal check area. I already knew the security officers line before he said it "we need to call our superiors regarding the proper protocol". Part of me wanted to say "because you have never had someone with special needs come through security before". But when it comes to National Security, especially on 9/11, I cooperate fully. I explained the situation to Sam and told him "No worries, Mom is right here". He was happy to touch the guard's badge and say "Hello" to everyone that came through. About 15 minutes later the "powers to be" come over and the usual questions are asked. "How old is he" "12" "He alarmed?" "Yes, because he touched the side of the walk through." "Are you travelling alone?" "Yes, just Sam and I" "He is your son?" "Yes, I am his mother" "Has he alarmed before" "Yes, he has metal in his hip" "Please wait as we do some further checking. The guard will wand Sam and his wheelchair, are you okay with that?" "Yes, that's fine". They used the pad to check for explosive agents, wanded and I asked "Do you need him to transfer to a regular chair so you can check the wheelchair further." The security guard told me "You are very patient and cooperative, thank you." He went on to tell me about someone else with a child with special needs that came through in a similar situation and was really rude. I explained that I am patient because Sam needs me to be and I am cooperative because I know safety is their #1 concern. I believe our children need to be checked out the same as any other traveller. I know some parents will not agree, but in my mind if it becomes easier to get a child with special needs through a United States airport it opens up the chance of our children becoming targets for terrorists. After some more phone calls and checks we were released to travel on to our gate. Sam and I thanked them and moved on.
I found some gluten free items Sam could munch on and we settled in. I was happy to see handicap accessible seating which allows more room for a wheelchair, walker and equipment without blocking everyone's path. I was thankful Sam's IPad was fully charged and I had something to read along with me. As we got closer to our departure time I decided to gate check Sam's wheelchair and walker. Why you have to do this process when you get your boarding pass and again at the gate seems kinda crazy to me but we comply. I was amazed at how many people tried to skip in front of us in line...funny...you don't see the boy in the wheelchair??? Hmmm...made me wonder how people that are wheelchair bound make it through the airport on their own. We got everything tagged again and headed back to our seats to find that the airport was really busy now and 3 well dressed business men had taken over the handicap seating. I took a deep breath and decided to push the envelope. I pulled up to the side and asked the gentleman on the end if he could move over so we could fit Sam's wheelchair without blocking the aisle. He looked at me annoyed but picked up his things and moved. I brushed it off and once again settled in. The displaced businessman continued to watch us and it wasn't until a woman in a wheelchair came up and said "I'm so happy they have handicap accessible seating here, it makes travelling easier." The man finally got up, looked at the back of the seating, saw the handicap access symbol and quickly moved away from us. Another teaching moment...completed. Now those who know me, know I have a very sarcastic sense of humor...don't think for a moment that a comeback did not enter my mind such as "I'm sorry I didn't notice your handicap, is it cognitive??" or "I imagine carrying that suit bag has fatigued you way beyond my pushing this wheelchair, while carrying the walker and lugging a backpack?"...by grace alone...I kept my mouth shut and simply smiled.
As we got closer to departure I noticed the lack of a plane at the gate. The announcement came shortly after that our plane was in route but we would probably have an hour delay. Deep breath...okay, we can do this. I began to think about how blessed I am that I didn't bring Jeff or Ben on this trip, neither of them are known for their patience or ability to "go with the flow". There is a good chance one or both would have been arrested after the hospital wait but definitely, DEFINITELY after spending 6 hours in the airport with Sam.
When our plane did arrive I decided not to take the chance of leaving it up to the airline to determine the boarding policy. Sometimes they allow those that need additional time/help to board first, sometimes they cater to their first class travellers and sometimes they stick firmly to a zone boarding. After spending 6 hours in the airport I knew we were boarding first. Sam's hip was going to be sore and stiff from sitting for an extended time. When he got up we had a limited amount of time to take steps before he would need to sit down. As I said before we have been on flights where 1st class goes on first and then blocks the aisle...mistakenly thinking Sam will stand and wait patiently...and instead he has yelled "MOVE" and pushed them out of the way. Yep, that makes us really popular. Other times I have had people put their carry on in the aisle or extend their feet or other body part...with pretty much the same result as before. So this time, I was taking charge and thankfully the gate agent agreed with me.
We settled into our seats and watched everyone else board. The door was closed....we pushed off from the gate...and we stopped. No, no, no!!! After 15 minutes the captain came on informing us that we had been temporarily grounded due to weather to our west and would remain for approximately a half hour or so. Sam grabbed his IPad (which thankfully still had a 40% charge), I grabbed my phone and asked Danielle if planes were crashing into buildings since I had already asked how the weather was???? After 1/2 hour we were advised to put away our devices and we began to move toward the runway. Sam was already starting his "1, 2, 3....go", we were the next to the runway....when...the pilot suddenly turned the plane around. NNNOOOOOO!!! Again our captain came on to let us know that we were next but they have again temporarily grounded all aircraft for approximately 20 minutes. He went on to say that they have turned off one of the engines to conserve fuel use. It was at this point I could not hide my reaction, I chuckled and said "Well that's reassuring, we may run out of fuel now." As if he heard me he corrected himself and reassured us that we had more than enough fuel to make the trip. GOSH...THANKS!
I texted Danielle to let her know the new information and my husband thought it would be great to have her text me that I should remain calm, positive, patient and easy going...to which I responded "Bite me". Leave it to Jeff to bring out the best in me.
20 minutes later we were finally in the air and I couldn't wait to land in Milwaukee. After waiting for everyone to deplane we were told Sam's wheelchair was at the gate and we could get off. Another small, small pet peeve...would it be too much to ask that the wheelchair be opened and ready to sit in??? Deep breath and feeling blessed to be home. We picked up our bag, made it on and off not one but two elevators in pack mule mode and found our car. Yes, there may have been a short audible scream upon finally sitting in my car with the door closed to which Sam replied "Mom stop it, go home".
I would love to tell you that the story, the drama which seems to be my life, ends there...but no...that would not be my life. Danielle due to her diagnosis of Mono is attempting to attend school half days, morning one day, afternoon the next before she comes home for a 5 hour nap. On Friday she asked me to drive her to school in the morning, as we are driving she tells me that she has a rash on her arm that is really itchy and shows me a little patch on her arm. I asked her if she used any new lotions or soaps but she hasn't. I drop her off at school and return home to start working with Sam. We just get started when she calls me on my cell and says "You need to pick me up right now". I said "Now what?". The rash had spread to both arms across her chest and was moving up her neck. I loaded Sam and headed to pick her up. By the time she got into the car the rash had started to move down her stomach and across her back. I realized she was having an allergic reaction to something so rushed to Walgreens and bought a water bottle and Benedryl. I had her take two tablets and hoped we had slowed it down. Through out the day Danielle began to complain more and more about the itchiness and pain soooo....I called her doctor who advised just to continue using Benedryl. By 6:00 she couldn't stand it any longer and was covered over 90% of her body. These pictures are from when she came home from school, it got much, much worse but taking pictures at that point was not an option.
Sooooo this life...has been beyond crazy at times and I am still very much riding that rollercoaster as I come into the new week. Along with everything going on I still more than ever miss my Mom, I miss my best friend and honestly the challenges that face me now could and should put me over the edge...and yet I am calm, I am positive, I am thankful and all of this I owe to the grace of God. I'm not strong enough to weather this tide, so when I went to church this morning and the Epistle lesson was 1 Timothy 1:12-17 "I thank him who has given me strength, Christ Jesus our Lord..." I can only say "AMEN" and thank you for everything...through grace alone...I carry on.