March 30, 2011 by Marj Hatzell
My husband’s fabulous cousin and his wife have a baby with special needs. She wrote this lovely speech for her Moms Group and I just had to share because, well, it was lovely and brought tears to my eyes. It’s long, so I apologize, but it’s worth the read, I promise you that. Without further ado:
My husband and I were expecting our second child in July of 2009. We had not done an ultrasound to see what we were having, so when we got close to delivery the doctor asked me what I wanted ‘it’ to be- I just smiled and gave the universal answer . “It doesn’t matter whether it’s a girl or a boy, I just want it to be healthy and to have ten fingers and ten toes.” Of course, that’s what I would have said. That’s what any mother would have said. Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, red lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being so ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart).Every mother wants a baby that can see, hear, run, and jump. She wants a child that can smack the ball out of the park and run so fast that the other kids are left in his dust.
Some mothers get babies with something more .
Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, behaviors they can’t explain, an extra chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away.
It felt like recess when you didn’t see the kick ball coming and it knocked the wind out of you. In some ways a relief to have a name to put with the pain, but at the same time you know that your world is about to completely change. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule him for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening to us?
I am someone who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles without an ounce of flab or fat, a powerhouse of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through it and pulls out an inhaler. In that moment I’m beginning to learn – there’s no such thing as a perfect body.
Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. I used to watch with keen interest and great admiration of the mothers of children with serious disabilities, and wonder how they do it. Frankly, those mothers used to scare me.
How do they lift that child in and out of a wheelchair 20 times a day? How they not cry for their child when it struggles or the child is in pain? How do they monitor tests, track medications, regulate diet, prepare for their child’s surgery, and serve as the gatekeeper to a hundred specialists and insurance companies hammering in their ear?
I wondered how they endure the clichés like “He’s a Gift from God” or “God has made him Special for a reason. Or when a well-intentioned soul tries to explain to them how God is at work when you know that they have occasionally questioned if God is on strike. And still those mothers continue to endure those well-intentioned souls when they could see themselves simply punching them and walking away. I even wonder how they endure the praises — saluting them, painting them as a hero and a saint when they know they are just ordinary mothers just like you. They snap, they bark, they bite. Those mothers didn’t volunteer for that. They didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” Well, I never imagined in a million years that I would be one of those mothers I just spoke about.
I will never forget the day my second child was born. The look on my husband’s face is forever implanted in my mind…when the doctor held up our new baby and said “Dad, tell her what the sex is”…Bobby’s face told me two things…first, that I had just given birth to a precious baby boy and second, that there was something wrong. In that silence a million thoughts ran through my mind. I kept asking Bobby what was wrong…and received no answer…I just saw the tears forming in his eyes. Then,after what seemed like hours, he mumbled, “he has a short leg but he is ok.”
The day after Owen was born we had x-rays taken and met with a Pediatric Orthopedic Surgeon who told us that his condition was called Proximal Femur Focal Deficiency or PFFD for short. Statistics are 1 in 50,000 births have some type of limb (arm or leg) discrepancy. Basically, Owens’s right femur is only 1/3 formed and probably stopped growing around 2 to 4 weeks of me being pregnant. This was never detected on my ultrasounds since we were not finding out the baby’s sex so my doctor really stayed away from that area.
After traveling to Baltimore to see a specialist when Owen was 3 months old, we learned that his right leg will only grow from the knee down and if we did nothing to correct his condition he would have over a foot difference in his legs. When he was born he had a 2-½ inch discrepancy and now currently at 21 months we have a 5-inch difference in his legs. At our visit back to Baltimore when Owen was 16 months old we decided that a prosthetic leg would be the least amount of surgeries and the fastest way to get Owen on the right track. One of my biggest fears throughout all of this is – Did we make the right choice for Owen? But I have to have faith and stand behind our choice and know that God is there with us every step of the way.
So we will have a surgery next summer at age 3 to get him fitted for his first prosthetic. This prosthetic is not the typical one you are probably familiar with. Owen’s leg will be turned around backwards so that we can use his ankle as a knee then fit him with a below the knee prosthetic for more mobility. In the mean time he wears a shoe lift and we go to therapy 3 times a day in hopes that he will be walking by age 2.
After my husband and I finally came to grasp Owen’s short leg we begin to enjoy the little things in life and treasure our blessing that we did in fact give birth to a healthy baby boy who will see, hear, run, and jump just liked we hoped for before he was born. Owen will just do things in his own time and in his own way. What I was not prepared for, as a mother of a child with a disability, was the learning delays that Owen has faced thus far. Probably the lowest part of this whole journey so far was when Owen was 9-month old and we went for his 9th month well check up.
His Doctor was going through all the typical age appropriate questions of what your child should be doing by 9 months. Can he sit up unassisted / is he crawling or pulling up to cruise / does he understand the word no / can he used his thumb and index finger to pick up food / does he reach to be picked up / does he wave hi or bye / does he point at objects / can he…I had to stop her as tears filled my eyes. I could not answer YES to any of her questions. In that moment I realized we were not just dealing with a short leg, that this journey would be a lot harder than I ever imagined.
Now, I realize that not all kids master the milestones at the correct time and that all children are different. But I will say that was the day my outlook on life changed forever. I wanted to question God and ask Him “Why Owen?” Instead I had to put my faith totally in Him and learn to be patient. I know that Owen will accomplish anything and everything in life but it must be at his own time and pace. Owen has had and will continue to have several learning delays – he did not sit up until almost 10 months, he didn’t crawl until 16 months, and he has just started pulling up to stand at 20 months. He is not walking at 21 months, his speech is delayed and he only says about 4 words.
The whole learning process for a child is so amazing. Every milestone is a stepping-stone for something else. Your child won’t crawl before they sit up. He won’t walk before he crawls. His speech won’t start until he is cruising or walking. I have learned a lot about development from Owen’s therapists. Once your child starts sitting up and crawling he will then be able to have the muscle tone and flexibility to do certain tasks. The reason Owen couldn’t self-feed, reach to be picked up, wave or point all related back to him not crawling. His speech delay is because he is not walking.
I never realized this with my first son. I always seemed to push him to the next level once he completed a task. I never stopped to appreciate what he had just accomplished. I think we all can relate to that. We push and push our child to crawl then to walk. Then, before we know it, they are running and we just wish they were still sitting still.
What I learned through all of this is to cherish the little things in life and that EVERY milestone is precious.
I Thank God everyday for Owen. He is such a blessing in my life and has made me a more patient and loving mother, wife, and friend. I also thank God for the wonderful support group that we have! My family, the women in this room, my church families, Owen’s doctors and therapists, the many friends of children with disabilities that I have met. I cherish my ties with these strong women and I hope they know how they have impacted my life. I could not be as strong as I am today without their support, prayers, and love.
I’m a mother who wanted a healthy baby with ten fingers and ten toes, and I am a mother who got soo much more.