Wow! I can’t believe this is truly happening! How exciting it is to be able to introduce P-man to the masses. Let me start off by introducing myself ~ my name is Amie and my fabulous husband, Donny, and I have been married for 5 years. I have three older girls, Kennedy (14), Hailey (19) and Austin (22). When Donny and I got married, we decided that we’d try for that boy…both excited and nervous at the idea of ‘starting all over again’ as the girls were well on their way to being self-sufficient. They were all such great girls, beautiful and talented in their own rights…did we really want to ‘test the waters’ by tempting fate? Well, you only live once, right? We knew God would bless us in whatever happened, so with a ton of faith and touch of trepidation, we were on our way to becoming parents again!
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Miggy: Hi Amie! Thank so much for sharing your family and specifically your son Parker with us today. First, take us back to the beginning… when did you find out about Parker’s condition? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Amie: After a miscarriage, we were beyond ecstatic to find out a few short months later that we were again pregnant. The joy I felt was a bit over-shadowed by the fear I had of having another miscarriage. Being of ‘Advanced Maternal Age’ at a young 38 became more and more concerning to me. But things were beginning to progress fine ~ our numbers started going up and our fears were reduced to mere padded concerns. Because of the miscarriage and my ‘old’ age, we were able to have a super-duper level 2 sonogram at 10 weeks where we were told the most glorious news…..the odds were in our favor that our little ‘peanut’ would most likely be suited for a blue room with baseballs and footballs and anything else that ended in –ball! We could hardly believe it. We left that appointment with such joy and pride in our hearts….thanking God for an answered prayer. The girls were super excited, as well….we would finally be able to trade in our ballet shoes for football cleats and our hair bows for baseball caps. I would have to get used to calling ‘nightgowns’ PJ’s and grow accustomed to dirt, trucks and bugs. Life was about to change….we just had no clue how much!
We went in for a 16-week check-up and were able to get a sono in the office. We were elated to get to hear his little heartbeat and see his cute little face. The sonographer seemed fairly quiet, but we were so happy to look at him that we weren’t too concerned. It was only after several ‘re-measurements’ when she excused herself only to have us go back in and talk with our doctor. Our OB-GYN happened to be a good friend of ours from church…so watching her uncomfortably begin to give us the news was a moment in time I’ll never forget. She explained that Parker’s bones seemed to be measuring significantly short and that that we needed to get in right away with a specialist to have his bones measured again. Words were thrown out like ‘dwarfism’ and I just remember thinking that everything was just a huge misunderstanding. It had to be, right? I mean, we didn’t come this far for something to be hugely ‘wrong’…right? After ruling out Down Syndrome and several other conditions that could result in smaller bone measurements, it was clear that Parks had a bone dysplasia and to what degree, they wouldn’t know until after he was born and was able to see a geneticist. That was it. Bubble busted. Happiness turned to Grief and Joy turned to Sorrow. What would we do? This is certainly not what we signed up for. There was a feeling of wanting to rewind time and just start over. Maybe this was all a mistake. Maybe this was God’s way of getting us back for something that we had done wrong in the past? How would we even begin to raise a child with a condition we knew absolutely nothing about? Really??????
We started praying more than any person has ever prayed. We prayed harder and more consistently than ever before. It was almost like we could pray the condition away. But like a tidal wave of comfort, God started working on us in a way we never expected. We started feeling a peace that passed all understanding. We felt loved, blessed and worthy…and ready or not, we were about to embark on a journey that would take us to places, feelings and experiences that only Parker could have paved the way.
Miggy: Please educate us about Hypochondraplasia and how your Parkers’s needs affect your day-to-day life?
Amie: Hypochondraplasia is a genetic disorder characterized by short stature and disproportionately short arms, legs, hands and feet. This bone dysplasia is considered a ‘short-limbed’ dwarfism. This means that while Parkers trunk is ‘average’ size, his arms and legs are shorter than ‘standard’ size. His head is also larger, which is common among those with this condition. Health-wise, we have been so very fortunate with P-man. He has had his share of doctor’s visits, but nothing life-threatening. He has a free pass to Scottish Rites Orthopedic hospital here in Dallas and we go there for yearly check-ups and x-rays just to make sure all is growing as it should. So far, so good. As far as day-to-day life with Parker, we don’t really have anything special that we need to do….he is generally a healthy 3-year old who takes a few more steps than other kids his age and may need a few more minutes to climb the ladder to the slide. We do have speech therapy twice a week as well as some physical/OT therapy that we will be involved in for months/years, and at some point he may be interested in going through a limb-lengthening procedure, but right now we just let Parker tell us what he can/can’t do each day and roll with it (we’ve gotten really good at that!)
Miggy: What are the biggest worries you face for Parker?
Amie: The biggest worries we face with Parker would probably be how he is accepted by his peers as he grows older. I’m a bit of an ‘impatient’ person and find myself intolerable to ignorance. This plays especially harsh when it comes to people reacting to Parker. I find God taming my worries as I see him interact on a day to day basis with his friends from school and church, but as kids grow older, so do their verbal perceptions…and as a mom, I can’t stand the thought of them lashing out at Parker. I suppose this is something that truly all kids face, I just know it he will be an easy target for those who don’t know any better.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Amie: Humor….oh boy, what a great medicine. I have to say, my husband was the class clown in school who has only fine-tuned his comedy later in life. He keeps us all in stitches around the house (as well as in public) and let’s just say his little apple didn’t fall far from the tree. P-man is the funniest little guy you will ever meet. While he doesn’t have a full sentence-strong vocabulary, he is never short on a facial expression or series of mumblings that make it very clear what he is trying to say. His actions now tell me we may have a few trips to talk with his teachers later on in life due to disrupting the class. But hey….I’ll take it. Wherever we go, there are always the stares…especially by kids, who can’t quite put their finger on what’s ‘wrong’ with him. There have been the occasional points and whispers, but mostly, we get ‘he is the cutest kid’! or ‘Oh my gosh, what an adorable boy’! What cracks me us is when someone asks ‘How old is your little guy’? and I respond ‘3’…and they follow up with ‘Are you sure?’. Yep…I’m pretty sure I was there when he was born and I’m no math genius, but I’m fairly certain it was a little over 3 years ago. I mean, really? I even had a lady tell me ‘He sure does have little feet’….to which I wanted to reply ‘Yep, and you sure do have over-due roots’, but I didn’t. I just smiled and said ‘Yes….and that just means we save money by not having to buy shoes every other week’! But we deal with it as it comes and thank God that what Parker doesn’t have in stature is abundantly made up in personality…there is no question about that!
Miggy: How can people best approach or respond to Parker? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Amie: How can people best approach Parker….I would have to say just approach him! He will do the rest, trust me. He’s never met a stranger, and with his lengthy lashes and adorable dimple, his cuteness will immediately have you in a trance ~ you’ll forget in an instant that he’s any different. The only other thing would be to treat him like a rambunctious 3-yr old…not a breakable piece of glass that should be covered in bubble wrap! This kid is loving and sweet, crazy and wild and sincerely a blessing beyond measure…..just come up and say ‘hi’!
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your Parker?
Amie: Siblings….hmmmmm. He has three older sisters who rarely let his feet hit the ground. Now, the two older ones are off to college and our youngest girl has her friends that have to come over every chance they get to get their fill of Parks. Kennedy even sends out ‘Tweets’ (Parker Pics) to all her Parker Fans. It’s so much fun to watch them interact with him … and to see how much they love and protect him. They’ll swing by and pick him up from daycare, watch him while we go to ‘Date Night’ and teach/terrorize him with all the latest makeup techniques. It’s kinda like he has 4 mommies….except when a diaper needs to be changed….and then it’s back to just me.
Miggy: What is the biggest lesson you’ve learned since becoming Parker’s mom?
Amie: The biggest lesson I’ve learned with Parker is not to judge a book by its cover. It’s strange how I look back at my life and noticed that I would avoid eye contact with those who were ‘different’ than me. Parker has taught us that no one is really ‘different’. His ‘needs’ may alter from any other 3-year old, but that doesn’t make him less-cute, less-worthy or less-of-a-person. Parker teaches us on a daily basis that just because his legs are short doesn’t mean he can’t play basketball (he’s got a mean slam-dunk) or won’t be an A&F model (the boy’s got some serious cover-model material). Odds are, he won’t be a professional basketball player….but guess what, the odds aren’t in any other 3-year olds favor, either. Parker is the epitome of hope. Hope for a brighter future, hope for a more tolerant culture and hope for a societal love where physical differences have no role. And if anything else, he has taught us that God truly does hand pick our children…AND he hand picks that child’s parents. We were given the awesome task of raising the coolest little boy … and take great pleasure that we were entrusted with that task. What joy to behold each day.
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So great Amie! Thank you. Wow–can I relate to your ultrasound experience. I’m so glad that you really articulated that experience as I think it hits most of us–complete shock and denial. What? Not us. You must mean some other family… you know, one of those ‘special needs ready’ families. Like a lot of things in life you’re really just not prepared. But over time, you adapt. And it’s kind of amazing to see the transformation from shock/fear to love/gratitude for this amazing little person in your life. The shock and fear you conveyed in the beginning was so beautifully transformed in your last sentence as I have no doubt that little Parker is truly a joy to behold each day. Thank you so much and give that handsome guy hugs from me!
Oh friends, I love doing these spotlights. They are such a joy and blessing for me–so thank you to each and every one of you who has ever participated and to each and every one of you who reads and shares these stories. I am so humbled to share these stories–these people!–with you.
As of now I really, really need some more spotlightees! So please, email me! Have your special needs mama + papa friends email me! thislittlemiggy@gmail.com. I can’t do it alone and I need your help, so please pass it along and lets feature some more amazing super humans out there!
Mwah! Have a great weekend!
Migs
Parker is so adorable! What a wonderful gift he is to your family.